Dreaming New Dreams

the homecoming

2012-01-12T15:42:00.000-08:00

I apologize for the lack of updates since Cale's surgery. We have had a tremendous outpouring of help and support and I'm feeling a tad bit guilty for not keeping everyone up to speed with Cale's progress. Alas, here is what's happening with the Burkhalter family.

Cale's surgery last Thursday was a success. I felt much better afterwards knowing that the doctor didn't hesitate for one second in telling us we did the right thing. Even so, seeing my boy in so much pain and seeing his little tummy forever changed by an impressive scar and foreign tube, I felt the wind quickly leave my sails.

Which is probably why the next few days left me so dejected.

Late Friday morning we hit our first major speed bump. After chatting with several visitors who had come through to see Cale, he attempted to test out his feet and stand up in bed. Upon doing so I noticed something leaking from underneath his gown. Hmmm. That can't be good. My mother-in-law lifted his gown and the tube that was previously anchored into his stomach was now dangling towards his knees. Not yet panicked, I stepped outside into the hall and notified his nurse as to what just happened. He stared at me for a few seconds and then quickly jumped into action. I didn't initially know what this all meant. I didn't know enough to be panicked or to even be concerned, but as soon as the parade of nurses and doctors hurriedly rushed around trying to think of the best way to go about fixing this situation, I knew that whatever had just happened wasn't an easy fix. I hopped into Cale's bed and cradled his head in my lap. I ran my fingers through his hair and told him not to be scared; that everything was going to be okay and that these people were going to take good care of him.

Right at that moment I was wishing more than anything that Alex was with us, with me. I was alone though. My mom had gone back to our house to shower and my mother-in-law had taken Riley and Cash down the hall to play. I was alone, my fear level rising more and more, and here I was telling Cale that everything was going to be okay. I needed someone there to tell me everything was going to be okay. My little boy was screaming in pain while they tried to feed the tube back through the hole they had made only the day before. The doctor told me that it was going to be painful but that they needed to do it as soon as possible otherwise the hole would close up and they would need to do surgery again. I watched the doctor's face as he tried to put it back in but I could tell it wasn't going well based on his expressions. Meanwhile Cale was screaming and crying in ways I had never heard before. I told him to squeeze my hand through the pain and I imagine his grip was similar to mine when Alex said the same to me when I was in labor. After a few minutes of pokes and jabs, Cale's surgeon looked at me and said the only way to safely proceed was to go into surgery...again.

That's when I broke down.

I hadn't cried up to this point but there was no stopping the tears. There's just no way to explain the emotional exhaustion of watching your child be put to sleep and in my mind I had crossed that finish line yesterday. I wasn't prepared to do it again, even as minor the procedure as it was.

An hour later Cale was once again being wheeled into the operating room.

Any progress we had made in recovering from the first surgery was now going to have to start all over. Thankfully we were able to choose different pain medications and coming out of anesthesia was night and day from the day before. Cale seemed to be more comfortable and once the surgeon was able to come out and talk to us, he sheepishly confessed that the tube may not have been placed correctly to begin with and that the tube falling out was perhaps a blessing in disguise.

The following days of recovery were much of the same. We were able to start tube feeds on Sunday and he seemed to get stronger and stronger by the hour. By discharge day, Monday, he was walking up and down the halls trying to get on any computer he could find. One would say he was finally starting to act like himself.

One thing I hadn't prepared myself for was the amount of responsibility we would have coming home. While in the hospital we briefly learned how to administer his feedings and care for the incision sites. I felt pretty capable to do all of these things but once we were discharged I literally had a series of mini panic attacks on the drive home. I felt as though we were driving home with our firstborn child and we hadn't read any baby books or been around anyone with a baby before. This was all so new to me and my lack of knowledge and feelings of unpreparedness were so unbelievably overwhelming.

A nurse met us at our house to give us all the supplies we would need and to set us up with a feeding pump. One part of getting Cale back to where he needs to be nutritionally is to have him receive a drip feeding throughout the night. I can honestly say this is what disappointed me the most. This is what set me over the edge emotionally. Cale's bedside no longer has a cute end table with a cute little car night light on top. No, instead his bed side is decorated with an IV pole and feeding pump attached to it. Each time I pass by his room I have to make a conscience effort not to look in, otherwise the tears start to flow again. There's just something about seeing such a specialized piece of equipment in our house and knowing that my child cannot properly grow without it that makes me so sad.

We are currently trying to adjust to a new routine. The "button" that is attached to the outside of Cale's stomach has two tubes that go inside; one tube leads directly into his stomach and the other tube leads directly into his small intestine. He gets "fed" every three hours through the tube leading into his stomach and the tube leading into his small intestine needs to be flushed with water every four hours. I feel like all I do during the day is connect and disconnect tubes. I'm either cleaning all of the supplies, administering medicine, mixing formula, making sure Cale isn't doing something that could lead to his tube getting ripped out, or feeding him and the rest of the family.

I feel like a nurse without the paycheck.

I've been especially discouraged today because Cale is experiencing the same pain symptoms as before the surgery and I can't help but let my mind spiral to the bottomless question of, What if? What if the surgery didn't fix anything? What if the surgery was just a mask over a bigger problem? Sure, I won't have to clean up vomit anymore but at this point I'd rather clean up vomit than watch him hurting all the time.

I feel like our journey with Cale is a dead end road. I'm so tired of this emotional roller coaster. I was expecting a pain-free little boy at the end of this and my heart is breaking, once again, with the realization that this may not happen.

surgery day

2012-01-05T19:28:00.000-08:00

A quick update before my eyes roll back in my head and my face collapses onto the keyboard. It was a long day and I am e x h a u s t e d.

The surgery itself went as well as the surgeon could have expected. He didn't go into a whole lot of detail but he did say that when he saw how large the hernia was he was a little taken aback. He apparently didn't wake up expecting to see what he did. They initially told us to expect an hour and a half to two hours for total surgery time but Alex and I nervously watched the clock tick past two hours, then three hours, and finally at the four hour mark the anesthesiologist came and led us back to the recovery room. Cale was already awake and, rightfully so, very scared. I laid with him in the bed to try and calm him as much as I could but I think it was the third dose of morphine that finally was able to put him at ease. The surgeon explained to us that the size of the hernia was what increased the surgery time and apparently it was quite the battle to get his stomach back down where it should be. He affirmed us by saying we absolutely did the right thing and that this surgery was 100% necessary. Whew!

When we left Cale tonight (my mom is staying with him) his pain was seemingly under control but he spent the majority of the afternoon incredibly uncomfortable. He has been getting doses of morphine every hour and will continue with that plan through the night. Hopefully by tomorrow we can start backing off on the pain meds. One concern is he has yet to produce a wet diaper even though he has been on a constant drip of fluids since surgery. We're hoping it's just taking awhile for his systems to wake back up from the anesthesia but it's definitely something to be mindful of.

An encouraging thing that happened was that Cale was able to eat a few ice chips. One of the many cons of this surgery is that swallowing can be incredibly difficult during the first six to eight weeks after surgery, but Cale seemed to tolerate the ice chips without too much hassle. I'm hoping the same ease carries over into swallowing food.

We made it - the surgery is finally behind us. After today I am realizing the recovery process is going to be harder than expected but thankfully we have a giant sized support system to help us along the way. We had several people come and sit with us while Cale was in surgery and I can't even begin to describe what a blessing that was, especially since the surgery time went well beyond what we expected. My mom drove in from Billings and will be staying the night with Cale tonight and tomorrow night and then Alex's biological mom from Seattle will stay with him the remainder of the nights. Alex's bonus mom, Leslie, has also made herself available to be with Cale and help with Riley whenever needed. Others have offered to keep Riley entertained while we focus on Cale and Alex and I get to come home to a cooked meal each day. We are so blessed.

The "church" is much more than a building for people to enter. The "church" is a group of people shedding God's love upon others by they themselves showing love to other people. I can't think of a better testimony of Christ's sacrifice for us on the cross than lovingly meeting the needs of other people. Our family has been no stranger to the kindness of others and I can't even begin to express my gratefulness for such a loving and caring support of people.

More tomorrow! Also, Cale would love to have visitors so please feel free to text my phone if you want to stop on by. :)

confession

2012-01-04T14:31:00.000-08:00

I've been feeling a tad guilty lately over my emotions regarding my son. Yes, Cale's struggles and life journey have put me through the ringer and then some. I've experienced a side of grief that I never had before and my good days and bad days seem to change so fast that it's hard to keep track of which kind of day I'm having. I'm always aware of our situation because Cale is constantly with us (thank God) which makes it hard to escape from the different life that God has given us. I used to have periods in my life, mostly when Cale was younger, when I would constantly wish that Cale were like all of my other friend's kids. I compared Cale to his peers until my head would nearly spin off into the universe until finally comparing him to other kids got to be so depressing that I shut that part of my brain off completely. Those periods of wishing Cale were normal used to be a daily struggle, but thankfully those years turned into days and now I only seem to have those moments a few minutes at a time. I truly love Cale for who God created him to be and even though it's impossible to say for sure, I don't think I could love my children as fully if we had been dealt a normal life. I'm definitely in a place where I can genuinely thank God for Cale and accept that he is exactly how God intended to create him.

I've been feeling guilty because this surgery seems like such a big deal to me. And it is...to ME. If someone were reading this who had lost a child or was helping a child fight cancer I'm pretty sure they would roll their eyes at my sob story and sarcastically tell me boo hoo! And I get it. This surgery is not life or death and even though it's going to forever change the way Cale's body works, God willing he will recover just fine and make positive steps forward. Like I said yesterday, this surgery is not a quick fix and we have a very long road to go down from here, but Cale will get through this. We all will.

With that said, Cale's surgery is tomorrow morning at 8:30. We met with the surgeon today and he affirmed our decision to go forth with it. He fully agreed that this was necessary and for the moment put my mind at ease. Cale's recovery time in the hospital will all depend on how quickly his intestines "wake up" and if we can manage his pain effectively. The surgeon said anywhere between three to seven days in the hospital and then another six to eight weeks until Cale is finally feeling like himself. We've tried our best to prepare him for what's going to happen and I think he gets it, or at least as much as a five year old can get something like this. He gets incredibly excited when we tell him it won't hurt anymore when he eats and the thought of being able to drink as much water as he wants throws him into fits of giggles. He also doesn't mind that he gets a couple weeks off from school. :) I think he's ready and I think I am, too.

It's been a long road leading up to tomorrow and I don't know how we could have got through it as well as we have without the love and support from our friends and family. We truly have an army of supporters and it blows me away to see everyone surround us with prayer and love. I have some of the greatest friends who have offered to bring us meals and the thoughtfulness of everyone just tickles me to pieces! I think I've said this before but I really hope I can be as great a friend to those who have been so kind to us during this entire journey. So, thank you for all of the help, for reading this and checking in with Cale, and for praying for our family.

Tomorrow this part of our journey will all be behind us...

surgery update

2012-01-03T15:50:00.000-08:00

I've been trying for the last hour to put into words what's going through my mind and how I'm feeling but each time I get a sentence down my finger latches onto the backspace button. So rather than try and make sense of my emotions I will just simply say this:

Cale is going in for surgery on Thursday. I've been tempted many, many times to call all of this off and postpone it for a few more months. I suppose in my mind I think a few more months will make me more ready for the changes that are about to take place in our lives but the truth in all of this is that I will never be ready. No amount of time is going to take away my fear and doubts. I'm scared beyond belief and the dread inside of me almost feels too much to bear.

My emotions make no sense to me. We've been waiting for this day for years and now that it's finally here I find myself back peddling on our decision. I've been alerted to many of the cons of the two procedures Cale will have and even though there is no other way to fix a hiatal hernia, I'm wastefully wishing there was another way.

We are meeting with the surgeon tomorrow for a pre-op appointment and we should know more after that. Right now it's my understanding that Cale will be recovering in the hospital for seven nights. Alex is currently in the middle of his work's busiest time of year and will not be available to take time off, which leaves me as the only parent to be with Cale. (my mom and mother-in-law will be here to help off and on) Based on experience, hospital stays are incredibly hard and taxing and this will be the longest one we've done yet.

I want to try and get a list of things we need prayer for but right now I can't seem to think straight. I will say this, though. Even amidst all of my fear and dread, I am confident that God's provision over us is pure. I believe in His sovereignty and trust Him with Cale. I'm so thankful that our God is good and that He forgives me when I let fear overshadow His perfect plans for us. Thank goodness He is in control because if I were in the driver's seat I would be adding and deleting things from my calendar faster than I could type them. I'm thankful for this Thursday and the road God has paved for us to get here.

God is good.

post ohio

2011-12-14T13:26:00.000-08:00

We have been home for several days now and let's just say the transition back to reality has not been easy. An awful stomach bug has ravaged our household and everyone but Cash has been subject to the pukies. The "high" of finding answers in Ohio wore off the second the stress of finding a qualified surgeon to perform Cale's surgery set in. To top it off, Cale has been refusing food ever since we returned home and the sight of his frail, weak body literally makes my eyes squirm. The stress mounted on my shoulders right now seems unmanageable and once again I feel like I'm drowning in the uncertainty of everything. I feel almost guilty admitting that things are not all sugar and spice after finding such a huge answer to prayer in Ohio but I am quickly learning that our trip there was just a tip off the iceberg.

Alex and I have been talking to as many resources as we possibly can in attempts of picking the best surgeon for Cale's surgery. Everyone seems to have a different opinion and the responsibility of making this decision is horrendously overwhelming. Part of picking the surgeon also involves deciding whether or not we need to travel. From what we know, the recovery time is three to five days in the hospital once the surgery is complete and ideally I would like to stay in Missoula. There is one surgeon here who is qualified and has been recommended to us by several people and with Cale's nutrition in danger I think we will choose to have it done in Missoula, for time's sake if not for anything else. We are waiting for the doctors in Ohio to complete their report so that they we can get the referral to schedule the surgery as soon as possible. With Christmas drawing near I am really hoping we get the referral soon so that we don't have to spend Christmas in the hospital.

The stress of getting his surgery scheduled and the stress of watching his little body get weaker and weaker by the day has almost kept me from tapping into the whole emotional side of everything that has happened in the past couple of weeks. My head understands that he will have surgery to fix the hiatal hernia and a g-tube placed in his abdomen so that he can get nutrition directly delivered into his stomach, but a little bit of my heart is breaking knowing that all of our hard work for the past five years has basically been for not. My persona as a calorie-counting nazi was achieved by watching every calorie consumed, even being forceful at times, and being a regular at the weight-check station in our pediatrician's office. I've worked my tail off and gained several worry lines on my face by monitoring Cale's nutrition, and all of that work was done to avoid having a g-tube placed in my Cale. A g-tube was an option we had from the very beginning and I've fought with all of my being to keep it from being our solution. This new reality of Cale getting fed through a tube is heartbreaking and I know I'm just in the beginning stages of coming to terms with that. What kind of mom fails at being able to provide adequate nutrition for their own child?

Cale has been sedated more times than any adult will be in their entire lifetime. This surgery will just be another hashmark we can put in his records. I feel like I'm on such a roller coaster; either I'm feeling overwhelmed by God's goodness and His perfect provision for our lives, or I'm questioning His sovereignty and playing the timeless game of "why me". I wish I could believe and live out God's promises for me and trust that those same promises apply to Cale's life, but sometimes it's hard to believe God's goodness when our circumstances have been brought into our lives by God. Faith is impossible to perfect and I hate when I start doubting God's provision over our lives.

I hope to update again soon with a surgery date. Thank you again for all of the prayers. Even though God's goodness seems foggy to me at times, I want to believe that all of this will bring us out on a better side.

Ohio: day four

2011-12-09T17:49:00.001-08:00

My Facebook post indicated that I would be writing this update yesterday, however the fatigue leading up to the end of this week has been setting in with a vengeance. As promised, here is the breakdown of yesterday...just a tad bit late.

The day started off much of the same. Alex stayed with Cale so my mom and I headed to the hospital bright and early.

As a side note I would just like to brag on myself for a moment if I could. The hospital is about a fifteen minute drive from our hotel and I am now able to navigate our way there without the use of Miss Garmin. Men are such great navigators but women often get the short end of the stick and I feel as though I've proven myself this week. Ha!

We arrived to find Alex a bit under the weather. I couldn't tell if he was tired from the lack of a good nights rest or if he was coming down with some sort of bug. Either way he didn't look very good and I could tell he felt it, too. We were very shortly taken downstairs to begin the first test of the day. This test was looking for how quickly Cale's stomach emptied a meal. Of all the tests Cale has been subject to this week this should have been the most easy. For whatever reason, though, Cale was terrified to lay down under the x-ray machine. Terrified may even be an understatement because his screams were so piercing that they hurt my ears. The techs strapped him down and he screamed during the entire three minutes he was required to lay there. Cale had to do this a total of three times throughout the day and even though he got a little more comfortable with each test his screams were still shrill.

After the first test Alex was feeling so bad that he decided to head back to the hotel to get some rest. I got a text from him when he reached the room informing me that he had made it back just in time to get sick. Great. My first thought was please don't let this stomach bug hit the rest of us and then I quickly prayed that Alex would get to feeling better very soon so that he could join us back at the hospital for the rest of the day. I hated that he didn't feel well but selfishly I needed him there, both for another set of hands to help with Cale and Cash and also for emotional support. I've found that the stress of being in a hospital can either wear down spouses to the point of anger, impatience, and bitterness towards each other, or it can bring them together and remind each other how thankful they are to be married. I'd like to think Alex and I fall into the latter category. I can't imagine doing this alone and I am so grateful that I have Alex to be my partner during such trying times.

Meanwhile, the sun was shining for the first time since we arrived in Columbus and so we decided to take advantage of it. With Alex back at the hotel my mom and I bundled up Cale and Cash and got ready to go for a walk. With Cale's IV pole, a stroller and a wagon, our crew made quite the display. The nurses outside of Cale's room raised some eyebrows but we were determined to get out of that hospital room no matter what! We charged right through and made it outside. It was quite a challenge to navigate all of us off curbs and across streets but we soon realized that the greater the challenge the more we had reason to laugh at ourselves. My mom and I spent the majority of our twenty minute walk giggling at how silly we must have looked. Cale enjoyed the sunshine, we got to breathe a little fresh air, and Cash slept through it all. I'd call that a success!

After returning to our room we hunkered down to wait for Cale's final scheduled test. This test was looking at the anatomy of his esophagus and stomach to make sure they were formed correctly. He was required to drink liquid barium while laying down underneath the x-ray machine and based on how he had done with the previous x-rays, we knew this test was not going to be easy. Like predicted, Cale started screaming as soon as he saw the machine. My mom stepped out of the room with Cash and the techs just looked at me while I tried to calm Cale down so that he could drink enough of the barium to get a good picture. In between Cale's screaming and my pleas, Alex magically appeared beside me and together we were able to talk Cale through the rest of the test.

Alex seemed to be feeling better after getting some rest and I immediately thanked the Lord for answering my prayer. We then spent the rest of the afternoon sitting impatiently around Cale's hospital room as we had been promised that the doctors were going to stop by to go over the results of all his tests. Around 4:30 the two doctors in charge of Cale's care entered our room. The lead doctor asked to sit down and she immediately started going over the results. She started off by telling us that Cale's motility is "normal" and I have to admit that I was immediately deflated upon hearing that word. She better have something better than that to report! But then she followed up with her findings of what's NOT normal! Here's what they found wrong in Cale's hurting body:

During a 24 hour period Cale refluxed acid 240 times. A normal person should only reflux 10 times during that same amount of time.
Cale has a severe hiatal hernia which basically means that part of his stomach is being squeezed above his diaphragm. Cale's hernia is so severe that over 1/3 of his stomach is basically sitting in his chest.
The part of Cale's stomach that is sitting about his diaphragm is basically acting like a pool for the acid to sit in, which is why the antacid medicine he takes daily has not been effective.

I cannot even begin to put into words what a relief it was to hear these words. Finally, Cale's pain and discomfort is justified! He vomits because his stomach is basically squeezed into his esophagus. He's in so much pain because acid is pooling in his stomach. He throws up blood because the acid is eating away at the lining. We have causes for all of Cale's miserable symptoms and it feels absolutely wonderful to finally know what's been behind all of this. I started crying tears of pure joy as the doctor was wrapping up and I told her that I wished I could give her a great big hug. She stood up, held open her arms and told me that hugging was okay.

I will very quickly go over what we will do to fix all of the problems listed above. Cale will have surgery to repair the hernia. They will basically tie a rubber band around the top of his stomach to prevent any part of it from "ballooning" above his diaphragm again. He will then have a G-tube put in which is a direct line into his stomach. He will be "fed" through this tube while he recovers from surgery and we will decide later when and if to remove it. The doctor said that if it were her child she would have the surgery performed right away so as soon as Monday rolls around we will start making phone calls to get recommendations for the most qualified surgeons in our area. I can't even imagine a Cale free of pain. It will be like having a whole different child...a happier child! And if you know Cale and know how happy he already is, this will be like a happy Cale on steroids...I can't wait!!!

I will try and wrap up a final post about our trip later but this one is long enough and it's time for bed. Again, thank you to everyone who has been praying for us and especially for Cale. I've seen God at work through this entire trip and I've even been able to look back at the last four years and see how God has woven those into this last week, so thank you. A million times, THANK YOU!

ohio: day two and three

2011-12-07T18:17:00.001-08:00

I knew I should have just posted a quick update yesterday evening but I allowed myself the excuse of being too tired and now I don't know which events happened yesterday and which events happened today; each day has now morphed into one. So I will just do the best I can of getting everyone up to speed.

We finished the first test yesterday afternoon which meant the tube was removed from Cale's nose and his "constant" was relieved of her duties. I feel for the people that had to spend 24/7 in the presence of Alex, my mom, and myself. Cale seemed to throughly enjoy his freedom from all the tubes and wires, taking every opportunity to dash towards the nearest nurse's computer. He may have the entire hospital reprogrammed by the time comes for us to be discharged. His freedom didn't last long, however, and he was started on an IV around 8:00 pm. The nurse who poked him was phenomenal and got it on the first try with little crying from Cale. He was much stronger with this IV than he has been in the past. He got tucked into bed shortly after that and Alex and I headed back to the hotel with Cash while my mom stayed the night with Cale.

This morning we woke up bright and early and headed back to the hospital around 6:45. Cale was scheduled to be taken downstairs at 7:00 to be sedated and prepped for today's test. Let me just say now that I am so very thankful that I wasn't fully aware of exactly how today would go, otherwise I would have lost hours of good sleep worrying about it. The team of doctors in charge of his sedation were great - very caring, informative, and empathetic. They allowed us to stay by his bedside while they put him to sleep, which is something I hate to do but also couldn't allow myself not to do. I've watched Cale be put to sleep a number of times and each time it's been hard on me. I always cry but as soon as we've spent a few minutes in the waiting room I am able to pull it together. Today I watched the doctor push the medicine through his IV and I anticipated much of what I have seen in the past. This time, however, was different. Cale's eyes fluttered back into his head and he started gulping for air. His back started to arch in rhythmic motions and I immediately became completely and utterly terrified to my core. I didn't know if he was having a seizure or experiencing complications from the medicines but regardless it was one of the scariest moments I can recall from our medical journeys with Cale. The doctor saw the panic in my face and quickly assured me Cale was simply fighting going to sleep. The terror stayed with me, though, and I broke down after we were escorted into the waiting room. I don't remember a time of ever being that scared.

Once Cale woke up he was required to remain still for eight hours while a tube about the diameter of a straw went through his nose and down into his small intestine, measuring the pressures and contractions of his esophagus, stomach, and small intestine. Keeping a five year old still for eight hours is downright near impossible. We watched a lot of movies, played with a lot of electronics, and did our best to stay positive. Of everything we've ever had to do with Cale this was by the far the hardest thing to date. Cale was terrified and it was very difficult to try and explain everything that was going on. At one point during the test the doctors administered a drug through his IV to bring on contractions in his stomach and small intestine. This caused Cale immediate, unbearable pain. He started to throw up and finally within about an hour he seemed to be relieved of most of his discomfort. He was then allowed to eat his first meal of the day which was at about 4:00. As per usual he was in pain after this and as if on cue he projectile vomited right in front of the doctor. Even though vomiting is what we don't want to have happen it was God's doing that he did it in the presence of his doctor. This got her attention and I just know we are on the right path to finding a cause for all of this. Cale has won the hearts of everyone he comes in contact with and we have so many advocates on our side. I feel as though they won't let us leave until they are able to help Cale; it's as if they have all declared this their personal mission. I love it!

Cale's attitude through all of this has been amazing. He was downright miserable today. He has endured a great amount of pain, remained patient while being confined to a hospital room and forbidden to move for eight hours, given us all grace when we lose our patience, and even lifted our spirits when we get down. I feel somewhat of a failure because he is the one keeping me strong. As the parent aren't I supposed to be his strength? He's such an amazing little man and his light shines bright. It's so easy to become depressed in this environment. There are sick children everywhere and families walk around with tears in their eyes and faces marked with exhaustion. This hospital is not a happy place and it's hard to remain positive. There's something about the way Cale can be subject to such misery and yet come out on the other side with a joy that is inexplicable. I'm so very proud of him.

Tomorrow will be another long day with two different tests scheduled. They will be a piece of cake compared to today but I imagine Cale will have lost the desire to remain strong. We are all ready for this week to be over.

I cannot thank everyone enough for all of the prayers and words of encouragement we have received over the last few days. Each comment, e-mail, text, message, and phone call have lifted our spirits in ways I can't even describe. I am so grateful for the love and support of our family and friends and I hope I am able to repay your kindness someday. Thank you, thank you, thank you!

Until tomorrow...

ohio: day one

2011-12-05T19:28:00.001-08:00

If there's one thing that I'm consistently reminded of in our journey with Cale is that there is always a child who is suffering more and a family who is hurting greater. As we've been walking the halls of the hospital we get a brief peek into what other families are having to deal with and it helps put the personal hardships of our journey into perspective. One child's room was decorated with lights and even had a Christmas tree, indicating that she had been there for quite some time and would most likely be there through Christmas. It makes our week long stay seem petty.

However with that said, today was no easy feat. We checked in this morning and were admitted into his hospital room. We met with one of the primary doctors that will be in charge of Cale's care and then he was taken to have an impedance probe inserted through his nose. This process was incredibly scary and uncomfortable for Cale and to be honest I had to look away as I held his head to keep him from moving. No matter how simple the procedure, the emotion of seeing your child in pain and in fear is always extremely difficult as a parent. His constant stream of tears made it challenging to tape the tube to his cheek. I hate seeing tears of fear.

The rest of our day was spent walking the halls, watching Max and Ruby, playing on his iPad, and typing on the computer. He was very despondent for much of the day and finally cracked a smile when he found a string of fiberoptic lights hanging from the ceiling of one of the play rooms. I anticipate spending much of our day tomorrow playing with these lights. I have no idea what draws him to these so much but I was thankful they brought on a smile and even a few laughs. Our Cale is one strong boy and I am constantly amazed by the bravery and poise he shows amidst the most difficult of circumstances.

The highlight of our day came late in the evening when we got to Skype with Riley. Seeing her and hearing her voice brought on the biggest smile we'd seen on Cale all day. Riley immediately noticed the tube in Cale's nose and asked him what it was for. Without waiting for us to respond she quickly asked if it was helping his tummy to feel better. Her words to Cale brought tears to all of our eyes! At only three years old she is one of the most compassionate people I know. Cale ended our Skype session by telling Riley that he loved her. :)

Now that today is over I am feeling even more confident that we are at the right place in the right hands. I'm hopeful and encouraged that these tests are going to reveal part of, if not all, the reasons Cale is in so much pain. The biggest encouragement so far has been the "constant" that is assigned to him. A "constant" is a nurse that is required to be with Cale 24/7. She monitors his every move; whether he is sitting or laying down, eating, coughing, gagging...anything! She will even sit at his bedside the entire night while he sleeps, which is a little awkward for Alex who is spending the night with Cale in the hospital. :) Apparently siblings are not allowed to stay the night which immediately made me unable to be with Cale. Alex and my mom will take turns spending the night.

Thank you for praying for Cale and our family. We feel every prayer and are so encouraged by the amount of love and support we have been given. More to come tomorrow!

ohio: travel day

2011-12-05T04:26:00.001-08:00

We rolled out of our driveway ten minutes later than planned and with three inches of fresh fallen snow the drive to the airport took a little bit longer than we had anticipated. Still, though, we got to the airport at a reasonable time and were pleased to see that the line at the checkin counter was only a few people deep. As we fumbled with luggage, car seats, strollers, and all the other crap that goes along with traveling with small children, we hear the guy at the checkin counter announce that the flight to Minneapolis - OUR FLIGHT - had been closed and that the gate was being shut. WHAT???!!! We still had at least half an hour before it was scheduled to leave! Thankfully, the employee had the departure time wrong and thought the plane left at 5:30 and not 5:50 like scheduled. Still, though, with all the chaos and confusion time was quickly slipping away and he was starting to tell people that if you had not yet checked in you would have to rebook the flight to Minneapolis. Thankfully Alex and I had just electronically checked in and held the tickets in our hands. We finally made it through that mess but literally had to RUN through security (or at least as best you can run through security) and after throwing shoes on the wrong feet, forgetting belts, and letting Cash's head bob crazily on my shoulder as we dashed to our gate, we finally made it on our flight, but not without the pleasure of receiving guilty stares as we obviously were the last people to board the plane...with two small children. I'm sure everyone just loved us.

Our flight to Minneapolis was nice and smooth and it was beautiful being able to watch the sunrise. Cash did okay on the plane, crying a few times until he finally allowed himself to fall asleep. My mom met us at our gate and we all got on the plane to Columbus, OH. That flight was also smooth and Cash behaved much of the same. Cale of course loved every minute of the flights and was a little sad when it was time to get our rental car. With the exception of nearly missing our flight it was a good travel day.

Once we got settled in our hotel we ran to the grocery store and looked for the nearest Starbucks. The latter of these two is by far the most important. :) We made dinner in our hotel room and took Cale swimming, something that he greatly enjoys and certainly deserved before the start of this week. Overall I think I would say our spirits are high and we are all incredibly hopeful that we are in the right spot seeing the right doctors. I think it's safe to say we are excited for the hope of finding answers.

I must admit, on the morning of Cale's first test I am mostly calm, which is pleasantly surprising. I know things will most likely change once Cale is admitted and the painful process of explaining to a thousand people why we are here begins, but for now I am certainly enjoying the calm.

I know without a shadow of a doubt that this calm comes from everyone who has been praying for us. I am so thankful for such an amazing support system. From those of you who have been there and done this to those of you that simply loves us and our little boy, thank you! It means so much to Alex and me to know that you're sharing with us on our journey.

We check in the hospital at 10:00 ET and Cale's first test begins today. It's a 24 hour test in which a tube is placed through his nose and down into his stomach. I'm not entirely sure what exactly this test is looking for but I will hopefully be able to update more tonight.

Thank you again for your continued prayers! If you want specific things to pray for here are a few things I know we'd appreciate:

columbus, ohio

2011-11-29T12:08:00.001-08:00

I have so much emotion stirring in me right now that I am going to try really hard to stay on point as I write this post but I can't make any promises. Just thought I'd throw that in while I still can.

I feel as though this coming week has the potential to wrap up our struggles of the past five years into one little pretty box. I'm reminded of the days when Cale was a baby, maybe four or five months old, and I would literally walk with him upright for two or three solid hours in hopes of keeping his last meal down. I remember feeling so defeated when after those hours of walking he would spit up immediately upon laying him down. Food has always been Cale's enemy and getting him on the growth charts, and keeping him there, has always been one of our greatest challenges. The problems Cale faces with food have just gotten worse and worse over time and I finally feel like this trip to Ohio is going to give us the answers we have needed all along. I want to hope that. I need to hope that.

But the truth in all of this is that I am absolutely and utterly terrified. I'm scared for the procedures and tests that Cale will have to endure. They are going to be painful and extremely uncomfortable and I'm scared to have to look him in the eye while he's miserable and tell him that mommy can't make it better. I'm scared after all is said and done that we won't have the answers we were so desperately hoping for. I'm scared of the doctors telling us that there's nothing they can do for him. I'm scared that the life we've been merely getting through is going to end up being a life sentence.

We leave for Columbus, OH on Sunday at the painful hour of 5:50 am. Thank goodness we live in small city with a small airport that allows us the luxury of arriving at the airport forty-five minutes prior to our departure time. Cale will be admitted into the hospital on Monday and from then on it's test after test after test. We are leaving Riley behind with Grandma and taking Cash since he's basically a lesion of me. Leaving Riley is no easy task and I'm sick to my stomach about it. Nothing about this trip is going to be fun. We will fly home on the following Saturday.

I'm scared of the can of worms this trip is going to open. You see, I haven't allowed myself to cry about Cale in a very long time. It's been months, before Cash was even born, and to give you perspective of the timeline, I used to cry weekly over him. Even when Alex pours his emotions on me about our struggles with Cale I refuse to let myself cry. It's a conscience decision I make and for the life of me I don't know why I do it. I think maybe it's because tears are tangible evidence of my heartache and sometimes it's just easier to pretend that the hurt isn't there. I feel guilty for being sad and for wishing that my life was different. God gave me this life for a good purpose and so who am I to doubt His plan for me. I want to be strong, for myself and for Cale, but even as I write this I feel the lump in the back of my throat that signals that maybe a good cry will make things a little better. I just know I am going to be an emotional wreck this entire coming week.

As I was laying in bed awake last night I was trying to count up the number of hospitals and specialists we have taken Cale to since he's been alive. I honestly can't remember some of them and a lot of them seem to mold into one. Ohio is by far the furthest we will have traveled to seek help. My mind keeps wandering to what we will do or where we will go if this trip isn't successful. I want so badly for this to be the end of the road; for this to be our winning ticket! I want Cale to live a life free of pain. I want for him to be able to eat a fruit snack or enjoy a glass of water on a hot summer day.

Here's to hoping that our trip to Ohio will bring us one step closer to making those things a reality for Cale.

mama bear

2011-11-17T13:28:00.001-08:00

It has been quite some time since I've mustered enough thoughts to create a post worthy of anything intriguing. The thing is, if I had written anything I think it would have been paragraph after paragraph of poor me. Life has seemingly kicked my feet out from under me, stomped on me a few dozen times and then spit on me for good measure.

I've been reflecting on the days when Cale was first born and how we were thrust into this whole new world of challenges and unknowns. Alex and I were trying to navigate the best we could through circumstances we never in a million years thought we would be faced with. We somehow managed to deal with one day at a time and in doing so that made it not so scary. Looking back at our first year with Cale, though, it's one of those times when you think to yourself how in the hell did I ever make it through that? I now know the answer - God - but it still amazes me at the strength that He was able to instill in me.

I think this past year, or perhaps the past two years, will be a period in our lives when we look back and think the very same things. How was I ever able to wake up each morning and get through the day?

Cale's pain and struggles are ongoing. I recently read an article in a magazine from an author whose daughter has special needs. The daughter has a list of issues but the mom expressed how the hardest thing for her to deal with was her daughter's feeding and throwing up. OH! How I can relate! I've reached the point where I am no longer hung up on the sadness of Cale not being normal. In fact, some days I may even say I am at peace with that. It's Cale's pain, throwing up, and obvious misery that goes along with feeding that makes me want to cry and scream at the top of my lungs. I want to make him better, I want him to be able to enjoy life the way any five year old should be able to, and I want to see him play happily with his brother and sister. Unfortunately, all of those wishes are on hold until we can figure out why he's having so much pain and issues with eating, and then the journey of treating or curing the why will begin. It is such a long and daunting road but one that, as a mom, I am ready to take on with all the gusto and feistiness a protective mama can bring. I've played the role of nice for far too long and I'm ready to bring out my claws. Enough is enough.

Currently my days are filled with pounds and pounds of stress. I wake up, stumble my feet towards the coffee maker (or some days I wake up to it sitting on my night stand, thanks to a wonderful and serving husband), make Cale's breakfast, all the while praying that if he throws it up it will be before I get him dressed for school, carry him out to his bus and then say good-bye to him for a relatively stress-free two hours and forty-five minutes. It is during these hours that I am able to breathe. After he gets home is when I decide if I want to brave it and take my chances of going out of the house. You see, for whatever reason, Cale is 95% guaranteed to throw up as soon as you set him in his car seat. The position of sitting must be unbearable for him because he writhes in pain while he's in that seat and it's usually only relieved until he throws up. I should really make the back of our car his closet because that's when I need all the extra clothes. The longer I wait after he eats to get in the car the better our chances of making it anywhere without an incident. Consequently, we sometimes don't eat lunch until well after 2:00. Cale never complains about this and so I've gotten over feeling guilty about "starving" my own child. After lunch we usually try and do something calm. Cale usually chooses to lay on the ground and play with his iPad or sometimes I'll let him watch a rerun of Curious George or Cat in the Hat. Most of the time I end up cleaning up at least one episode of him throwing up between lunch and dinner. It is during dinner that I become the most anxious and stressed. As the day goes on the worse Cale gets. He's in obvious pain at the end of day no matter how long it's been since he's eaten. His body refuses to let him do anything fun and it breaks my heart that he's confined to laying on the floor while his sister is able to happily play within his reach. Immediately upon him finishing his dinner we get him down from the table and lay out his favorite blanket on our hardwood floor (purposefully avoiding the carpet) and let him play with his iPad until we are all finished eating. Alex and I nervously keep our eye on him, waiting for the signs that he is about to throw up. Sometimes we are lucky and are able to get him to the sink in time. Bed time finally comes and usually if he doesn't throw up within half an hour of getting him in bed we are good for the rest of the night. Time to turn out the lights and get some rest for tomorrow.

I hate the fact that I have to plan my outings away from the house around Cale's eating schedule. I hate it even more that even if I plan it perfectly that it's no guarantee that we're going to make it through without him throwing up. I hate that the embarrassment of Cale throwing up is a factor in accepting an invitation to someone else's house for dinner. I hate that throwing up is seemingly normal for Cale. I hate that he's in so much pain and I hate that we can't do anything to fix it. I hate that I don't have more patience for him and I hate that while he's suffering I'm mulling over the chore of cleaning up vomit for the fourth time that day. I hate that the aid on Cale's bus sits in front of him with a trash can at Cale's feet just waiting to catch whatever comes up, and you can be certain something will come up during the ten minute ride from school to our house. I hate Cale's disability and I hate that God is choosing not to heal him.

I'm sure deep down I can find joy in God's plan. I'm sure deep down I can say that I am thankful for the circumstances He's brought into my life because deep down I know He's making me more like Him.

But I can certainly say that this is a period in my life that I am going to look back and wonder how on earth I was able to get out of bed each day.

milestones

2011-09-14T13:17:00.000-07:00

Here are a few (good) things going on with Mr. Cale:

Three weeks ago he learned (gained the confidence) to go down the stairs all by himself with just the use of a handrail! This is both good and bad in the sense that he loves his new talent and wants to practice it all day long which provides many opportunities for him to do so unsupervised. I'm waiting for his first tumble.
With a lifejacket and four noodles tucked under his arms he is able to stay afloat in the swimming pool without someone holding on to him. He is also figuring out that if he kicks his legs he can move to other parts of the pool.
With nearly 4 1/2 years of speech therapy under his belt he is gaining more and more control over his speech. He can say all of his vowels without a second thought and is trying new sounds every day. A lot of his words I can understand if I know the context and if I made a list of the words he can say it may add up to about ten or so.
He can finish an entire small cup of ice cream from Dairy Queen!
He can get on and off a tricycle without any help, although peddling is still a work in progress.
He is able to show irritability towards his sister, in a way she can understand, when she's wanting him to do something that he doesn't want to do. I love that he's growing a backbone...this will come in very handy in life. I'm still looking for mine.
He can identify most letters and can even produce a few of the correct sounds. I'm pretty sure he'd be able to say them all if his mouth would just work right! :)
He is in the beginning stages of potty-training. We have had a handful of successes...wahoo!!!
He wants nothing more than to be Buzz Lightyear from "Toy Story".
He can play at a park like a semi-normal kid because he can go up stairs all on his own and finally feels confident enough to just go for it, even if it is a little scary!

There are probably many more significant things he's doing these days but those are just a few I can jot down in words. He is improving and progressing daily and it's during the hard times that I wish could remind myself of that more often.

Here's what Riley is up to:

She took swim lessons with Alex at the start of the summer and can now swim around the pool all by herself with a lifejacket on. She hops in and out without using the stairs and even dares to jump off the diving board. I am cautious of everything, she is cautious of nothing!
Riley sits in on Cale's speech therapy and so she's also able to identify most letters and say a few of their correct sounds.
She is able to count objects, as long as there isn't any more than ten. :)
She is starting to "pretend play" and it's absolutely hilarious to listen in on the scenarios she thinks up.
She is on her way to being potty-trained during nap time and bed time. She's completely potty-trained during the day.
She loves the movie "Cars" and would be content to watch it every day for the rest of her life.
She can swing in a big girl swing which terrifies the heck out of me.
She can color mostly in the lines. :)
She hates that she can't go to school like her big brother.

All in all, Riley is growing up way too fast. Her mannerisms and choice of words all point to a young girl instead of my little toddler.

And finally, Cash:

At two months old he weighs 13 lbs which puts him in the 75th percentile. His height also hits the 75th percentile at 23 3/4 inches.
He poops ALL DAY LONG. I'm very serious when I say I don't think I've ever changed just a wet diaper and I think we go through about twelve diapers a day.
He is starting to go longer stretches between feedings, so now I can go about three hours without feeling like all I am to him is a cow.
He is sleeping okay at night. His longest stretch of sleep has been five hours but that has only happened once. It's usually two or three hours before he starts yelling at me to change his diaper and feed him.
He is smiling more and more and within the last few weeks has really started using his voice. I love those little coos.
He is able to control his head very well and I can contribute this to the fact that he is the first child of ours to not loathe tummy time. He is content to be on his belly for five or ten minutes before he realizes that his face is beginning to smash into the carpet. :)
He has an uncanny ability to know when he's not being held, therefore I spend the majority of my day with a baby in my arms. Note: I secretly enjoy this because, God-willing, he is our last baby and I want to soak up and enjoy every minute I have with this little guy.
He tracks me from across the room and is soothed by the sound of my voice.

He is definitely an easy baby, or perhaps it just seems that way because he's the third baby and we've relaxed quite a bit. For the most part he's pretty chill and I could not be more thankful that God outnumbered Alex and me with a third child. :)

normal mom things

2011-09-07T16:24:00.000-07:00

Being Cale's mom sometimes feels like the loneliest place in the world.

No, it is the loneliest place in the world. Or at least in my world.

I want to be a normal mom.

With summer winding down and school back in session, moms are excitedly dropping their kid off for their first day of school and having to hide back the tears when their child doesn't want them to kiss them good-bye or drop them off too close to the front of the school. Moms are fighting to sign up their kids for soccer, gymnastics, dance, and t-ball. Their schedules are crazy and their calendars are all marked up with different activities with lists of whose responsible for taking who where.

Today was Cale's first day of school and we have spent several weeks preparing him for this day. The mere mention of the word has brought on a bucket of tears and hours wasted with anxiety. It's very difficult for Cale to forget anything and we're learning that it's becoming more and more of a struggle to redirect his thoughts and attention, therefore an entire day can be spent assuring him that his first day of school is going to be okay. Last night we had our first big success of talking about school without encountering a major meltdown. I pretended to be his teacher and went over what I thought she might ask him when she saw him for the first time. He seemed to like that and we saw our first glimpse of excitement in him. He actually went to bed without crying about today's looming events. Success!

We woke up this morning and only had a few bouts of whining. He ate breakfast, got dressed, brushed his teeth and we were all ready in perfect time to take a few 'first day of school' pictures. I was relieved to see that he was in a good enough mood to smile for the camera. In fact he even seemed excited which filled my heart with unexpected joy. After pictures we hopped in the car and the drive to school was relatively calm. We went over what he was going to tell his teacher if she asked him what he did this summer and that seemed to lighten the mood. Once we pulled up in front of school I could tell he was becoming more and more anxious, and sure enough it was a tiny bit of a struggle to get him to walk into his classroom. He clung to Riley and shed a few tears when it was time to say good-bye but as soon as we turned the corner the cries muffled out so I'm assuming he calmed down rather quickly. We survived the first day of school drop-off.

Needless to say, I wasn't crying over how independent and grown up my little boy was becoming. I walked away wishing that for special days like these I could be a normal mom.

With summer winding down, our schedule is changing and a new routine is about to begin. My calendar is full and life is about to get crazy. However, instead of fighting to get Cale signed up for t-ball or soccer, I am fighting to schedule his many therapies so that we can get through the week with a tiny bit of free time. My calendar is full of doctor appointments, case worker meetings, and conferences on how to maximize Cale's potential. I wish so badly that I was a normal mom that could sign my son up for normal things.

With Cale getting older and his peers growing right along with him, I feel that we are on the journey to getting left behind. It seems as though my girl friends get together because their kids enjoy playing together...they ask to play together...and no one ever asks to play with Cale. I feel as though I am getting left behind which is both incredibly hard for me to admit and incredibly difficult for me to accept. I always thought Cale's differences would affect him in this way, never me. I just want to be a normal mom.

The crappy thing about all of this is knowing that Cale probably wishes he were normal a million times more than I wish I were a normal mom. My heart just aches for him, for us.

third time's a charm

2011-08-16T15:26:00.000-07:00

Okay, I apologize that it's taken me five weeks to update the ol' blog. Let it be known, however, that I have thought about posting many, many times. I've even sat down and started to write at least a dozen different instances. The hangup inevitably occurs when I decide to lay Cash down. <gasp!> Yes, this baby hates to leave my arms and I must admit, I'm kind of smitten with him and so I generally try not to complain too much about his incessant need to be held. He's content in his swing, for the time being, and so I'll try and knock out a quick update our new life as a family of five.

I think the best way to sum it up can be found in my response when a friend asked me how it was going with three kids. My answer: I love it.

I'm not sure I was able to convey my anxiety and trepidation over his arrival very well in writing. Before Cash was born I was scared beyond belief of what adding another child would do to our family, and more selfishly of what it would do to me. Raising two kids is a challenge for me, especially when one of those kids requires special care that I feel like I am the only one capable of giving. I'm terrible at asking for help and so when life gets hard I feel like I'm getting sucked under water and dragged out to sea by the undertow. How on earth was I going to manage a newborn?

When I was in labor and my doctor told me I was at nine centimeters and almost ready to push, amidst the pain and exhaustion of labor, I remember thinking that my life was about to change; a new life was minutes away from turning my whole world upside down. I was scared. I was asking myself why I ever thought another child seemed like a good idea. I was looking at Alex and thinking, "You did this to me!". But then he was born. And then he cried. And after he was laid on my chest and I caught my very first glimpse at him, I was in love. He was perfect.

Adjusting to three kids has been nothing short of amazing. Sure, life is a bit more crazy and it takes me half the day to get ready to go anywhere, but being a mom of three could quite possibly be one of the greatest things to ever happen to me.

I get asked all the time how it's going with three kids and the person asking me usually has this grimace on their face as they wait for my reply, as if I'm going to breakdown in a heap of tears and they're going to have to comfort me after I tell them how awful and exhausting it is, but then I love the look of shock on their faces after I tell them how much I love it and how wonderful it is.

I have to admit, though, I'm just as shocked as they are. After we brought Cale home from the hospital I was completely overwhelmed and paranoid about every. aspect. of parenting.. After we brought Riley home I was a total mess and couldn't stop crying for days. This time around, though, I'm genuinely happy and so very grateful.

I guess third time's a charm.

back to basics

2011-07-11T10:05:00.000-07:00

I spent the horribly long winter months wishing them away. I longed for Summer and for the freedom of being able to play outdoors. I was sick and tired of wasting thirty minutes of my day making sure coats were zipped, hats were on, gloves were secured, and boots were tied. Winter in Missoula was six long months of constant overcast and record snowfall. Thankfully Summer finally arrived, the snow melted away and the sun started to shine. Along with Summer, however, came the rude reminder of why disabilities suck.

I've refused to acknowledge my feelings of bitterness and sadness towards Cale's disability for the last year or so. It does me no good to dwell on it because the truth of the matter is that it is what it is and there is not one thing I can do to change it. I would become a miserable person if I spent each and every one of my days being sad or angry over the life I have been dealt as Cale's mom.

This morning, however, I was pushed to my breaking point.

A group of ladies, who also happen to be some of my closest and dearest girlfriends, have been meeting on Thursday mornings for the past few years as part of a bible study through our church. Cale's speech therapy has always been during the times they meet and so I have never been able to attend. This year, even though the official bible study broke for the summer, a certain group decided to meet privately at a house to keep the fellowship and spiritual growth moving. Knowing that I've never been able to come, they worked hard to change the time to accommodate me. Today was my first day.

To give you a peek into my thoughts going into something like this I think some background is appropriate. I become very anxious doing things like this for myself when I know I'll have to bring my kids along. On one side of the coin I see the need and importance of being around other Christian women who are in a similar stage of life as myself. I think fellowship is critical and having friends around to encourage and guide me is priceless. On the flip side, however, I am faced with the guilt of leaving my kids, Cale in particular, with a babysitter. I play mind games with myself that always give me an excuse of why I shouldn't go, such as "The person watching all the kids doesn't know Cale and since he can't keep up with all the other kids he is eventually going to latch onto the babysitter, she won't know what to do with him so I'll end up keeping him with me and then I won't be able to focus on the bible study so I probably shouldn't even go." I give myself every reason in the book to stay at home. Home is comfortable. Home is familiar. Home is where Cale feels most secure and safe. Home is where Cale is understood. Outside, in the real world, is unknown. Very few people understand Cale and trying to get his wants and needs across to others must be a never-ending frustrating and overwhelming road for him, not to mention for me as well.

We got to my friend's house and I immediately felt uneasy and anxious. I saw all of the other kids running around and playing, being typical kids. And then I saw the giant water slide. Cale is very familiar with this giant water slide. In fact it's one of his very favorite things to do during the summer. It's a big inflatable toy that has two adjoining slides that splash into one big pool of water. Cale loves it. The only problem is that he requires constant assistance in order for him to enjoy it. He needs help climbing up the "rock wall" and then someone to encourage him to scoot to the edge of the slide so that he can gain enough momentum to go down by himself. Oh, and then he needs someone to make sure he can sit up once he reaches the bottom so that he doesn't drown. Constant assistance. I see at least fifteen kids running around my friend's backyard and two babysitters. One babysitter is holding a baby which leaves one free babysitter. She is busy herding the other fourteen kids. The odds are not looking good for my Cale. There is no way he can play on this favorite toy if I leave him and go sit with the other moms to discuss our book study. I try and take a deep breath and convince myself to just treat him like a normal kid and put him in his swimsuit. Thankfully another mom sees me struggling and offers to help sunscreen and change Riley. Little did she know that she also distracted me enough to keep me from bursting into tears. Cale is finally dressed and lubed so I walk him over to play in the water.

I take my seat amongst the other moms which is only about fifty yards away from where the kids are playing. I try to engage in the conversation but my mind and eyes are fixated on Cale. Is he okay? Is anybody playing with him? Should I be over there helping him? I feel so guilty. The moms are going around introducing themselves and sharing a high and low point of their week. It's my turn and without hesitation I admit that my low point for this week is this very moment: watching my son unable to do something that he loves. I admit that I feel guilty for leaving him because in reality I am literally the only person there that knows how to help him and communicate with him. I see him sitting at the bottom of the slides, looking up at the kids who are running circles around him and splashing water in his face as they take their turn down the slide. I want to cry and I want to leave. There is no way I am going to be able to participate in the conversation or get anything out of sitting with these other moms while I watch my son struggle like this.

I eventually get up and walk over to help Cale. I spend the rest of the time playing with him and helping him to have fun. I'm realizing that perhaps doing things like this is just not possible for me right now. I'm not like all of the other moms and not both of my kids are like all of the other kids. Cale needs me in ways that other kids don't need their moms.

Disabilities suck, especially during the summer. Activities like going to the park, taking a late-night trip to get ice cream, eating a popsicle on a hot day, or running through a sprinkler are not things that Cale can easily participate in. Cale's never even been able to enjoy a popsicle.

Disabilities just suck.

be careful what you ask for

2011-06-28T13:53:00.000-07:00

Let me begin by saying that I am entirely grateful for reaching the 38 week mark in this pregnancy. I begged and pleaded with God for nearly nine months asking for this very moment to become a reality for me and He was faithful in answering my many, countless prayers. With that said, however, I am so ready for this to be over. During these last several months I have created a mountain of anxiety over worrying about what my life as a mother of three will be like and I'm finally ready to begin this climb. Sink or swim has been my personal motto the past few days and I just want to know which one it's going to be. I hope I have my flippers and life vest with me.

Aside from swollen ankles and a worn path in our carpet leading from the bed to the bathroom, I truly have very little to complain about. I seem to have more energy than usual, which is good considering my kids are on over-drive now that the summer weather finally decided to show up. I have been cleaning like crazy and keeping up with the laundry, all the while making time to either take the kids to a park or a pool to burn off their extra energy. I have been trying to go on long walks or hike the M to get this whole process started but so far the only results I've gotten are a sore butt and puffy feet. As of my check-up with the doctor last week I am a few centimeters dilated and about 80% effaced, however I was that way with Riley for nearly three weeks before he finally decided to induce me. Not favorable news in my eyes. He keeps telling me I won't make it until my due date but I have a feeling God took my prayer of "Please keep me pregnant for 42 weeks and I promise I won't complain" to heart and He's up there looking down on me and saying "be careful what you ask for, Kid.".

I promise not to complain, I promise not to complain, I promise not to complain...

one year later

2011-06-01T12:53:00.000-07:00

A sweet friend of mine approached me about a month ago and offered to throw me a baby shower. I honestly hadn't given much thought to the idea of having another baby shower, especially since this is my third child and I already have baby boy clothes of Cale's. Would people think I was a greedy snob for asking for even more stuff to add to our already plentiful baby collection? I really didn't see a need for gifts and when I told my friend about my concerns of her throwing me a shower, she laughed and simply reminded me that it wasn't about the gifts but about celebrating this new baby's life. Okay, okay...how can one say no after putting it like that? I agreed to the shower but not without lingering feelings of guilt.

My shower date is set for June 11th. When I made a list of dates that worked for me this particular one stood out in my mind like bold print. I thought perhaps I was forgetting someone's birthday or anniversary but I never could put my finger on it. My friend picked this date and sent out the invitations, all the while leaving me wondering why on earth that day was leaving a fingerprint on my mind. I had all but forgotten about it until driving home from running errands this last weekend. June 11th of last year was the day we lost our baby when I was twelve weeks pregnant.

I remember that day so vividly. The initial phone call to my doctor, the half hour of waiting in the waiting room, the seemingly blank ultrasound picture, and then the drive back to the hospital that afternoon to have our baby removed from my body. Days like that day belong in movies, not in real life. Not in my life. But now, a year later, I feel surprisingly little. I'm not sad or angry or regretful. If anything I'm a little embarrassed of how void my emotions are. Is it because I have this new baby to look forward to that I don't miss the life that could have been? Or is it because the imminent arrival of this baby makes me realize that I've needed the last year to prepare for myself for this upcoming transition?

June 11th of this year will be a day filled with joy. I'm so thankful that my friend convinced me that a baby shower isn't just about getting gifts but rather about celebrating a new life. The coincidence of it all is just too uncanny to be a coincidence. I think God is gently reminding me that He is in control and even the trials He allows into my life are woven perfectly into His plan.

rain, rain, go away!

2011-05-31T13:16:00.000-07:00

I have yet to see more than two days in a row of good weather here in Missoula. We keep getting teased with little glimpses of Spring but I'm fairly certain Summer will be here before Spring truly arrives. This had better not be any indication of how Missoula's summer is going to go. I want three solid months of temps in the 80's and 90's...and if I'm still huge and pregnant when the hot weather rolls in, so be it!

This Memorial Day weekend was rainy. And cold. BUT, we were able to have a fantastic few days together as a family despite the icky weather. We painted the baby's room and kept the kids busy with various activities such as the carousel, a baseball game, lots of umbrella time, movies, and driving Cale's and Riley's motorized Jeep around up at Grandma and Grandpa's house. The kids were very sad to watch Dad leave for work this morning and we are slowly trying to adjust to our normal weekly routine. Wish me luck on that one. So far I have battled a tantrum or sibling rivalry every half hour.

In other news, I am slowly but surely getting back into taking pictures. In the month of May I took over 1,300 photos, however I'm sure I only kept about 100 of those. I'm proud to say that not one of those photos was shot in automatic mode. I am loving playing around in manual mode and the more I do it the more comfortable I am getting. Alex bought me a new photo editing software for Mother's Day and even though it will probably take years of practice before I ever figure it out, I am having a blast playing around with pictures and making them unique. I have a feeling this is going to be a very time-consuming hobby. :) My dream is to get good enough with photography that I can make a name for myself by becoming a photographer for Community Medical Center and specializing in taking pictures for families who either know they are going to lose their baby at birth, or being called in at all hours to photograph a baby who died unexpectedly during birth. I'm also becoming more and more interested in possibly photographing hospice patients. We'll see where my dream takes me. All I know is I love photography and the challenge of getting that perfect shot keeps me coming back for more. I suppose it's a lot like the game of golf in that way. It doesn't matter if the first seventeen and a half holes were complete and total disasters if you have that perfect last shot on the eighteenth hole...chances are you'll be back at it again the next day to find just one more.

In pregnancy news, I had a routine doctor's appointment this morning and apparently my body is already preparing itself for labor. I'm starting to efface and my doctor wants to start seeing me every week from here on out. To even begin to think about finally meeting this baby has me completely high strung for a couple of reasons. The first one being that I am only 34 weeks pregnant and it's still far too early for this baby to make his grande debut. Second, we have yet to agree on a name and there is no way I am delivering this baby without a name picked out for him!

I cannot believe I will soon be a mother of three.

laugh lines

2011-05-24T13:44:00.000-07:00

I have newly formed wrinkles upon returning from my weekend retreat, and yet I could not care less about them or the fact that at eight months pregnant I was forced to sleep on a half-inch thick mattress on top of a piece of plywood. Yes, the weekend retreat was just that - a retreat!

I had the extreme pleasure of spending two nights away from my daily life and responsibilities and surrounding myself around sixty wonderful ladies. We spent the weekend laughing, eating, experiencing God, laughing, doing girly things, eating, and laughing. I don't think I have laughed so hard since I found my son covered from head to toe in poop. Oh wait, I didn't laugh then. I cried...and then yelled. So truly I don't remember the last time I was able to laugh that hard. It was a perfect weekend to cap off this pregnancy before life takes another wild turn.

In between meals, getting a sunburn with some pretty awesome sunglass lines, taking pictures, learning how to make fantastic tablescapes, and devouring an entire chocolate buffet, we also got to hear from an incredible speaker speak on the book of Esther. I had no prior knowledge of anything to do with Esther and this short book in the Bible turns out to be rather sweet! I also got to talk with some of my best girl friends, all of whom have kids, without the interruption of kids needing to go potty or throwing a fit because someone took the toy they were playing with. We were able to be completely selfish in our time and it was fabulous! I stayed up until nearly one o'clock each night, which is highly uncharacteristic of me, but it was so worth it. I think the whole purpose of the retreat was to feel rested and recharged when we came home, but since I only averaged about six hours of pregnancy sleep I definitely didn't come home rested but I would do it all over again in a heartbeat.

I am so thankful for my friends who relentlessly encouraged me to go. As you might remember, I initially said no way to the thought of being three hours away from medical care, but as more time passed I started to feel a peace about going. A lot of my friends don't mind that I'm a hypochondriac and they even offered to listen to me if I needed to vent my worries to someone. Many times throughout the weekend I would have someone come up to me and ask me how my stress level was doing, which further proves the fact that I have awesome friends. :) AND, I came back still pregnant so all of my worries were for not.

I must say, though, sleeping in my own bed on top of my own mattress is priceless.

happenings

2011-05-20T10:21:00.000-07:00

I apologize for letting nearly a month go by without posting. Truth is, I haven't really had anything to say. We've been chugging along, impatiently waiting for the day when Spring finally decides to arrive in Missoula. I am SO ready for warm weather and sunshine!

I am 32 weeks pregnant now and getting more and more excited to meet this little guy. Alex and I have yet to settle on a name and I have a feeling we won't have a final answer until he is born. We are both set on a name but neither one of us seems willing to budge, yet I have a feeling I will be victorious in the end. :) This little guy never seems to stop moving and his jabs and pokes are becoming more and more uncomfortable as he gets bigger. Every now and then I can feel a perfectly formed foot trying to explode from my stomach and even though this is the third time feeling a baby move inside of me, it never gets any less amazing. The only part of pregnancy I will miss is feeling the baby move. Thank goodness, if all goes according to planned, this is the last time my body will be subject to such torture. I used to be a firm believer that pregnancy was a beautiful, joyful, and amazing one-of-a-kind experience, but this baby has proven to me that not all pregnancies should be treated equally. I am extremely grateful to be carrying this child but it certainly has not been easy or enjoyable.

In other news, I am headed out of town in a few hours to spend the weekend at a women's retreat through our church. Its theme for the weekend is called "Pampered for a Purpose" and can I just tell you that that could not sound more heavenly right now. I will be surrounded by a wonderful group of ladies, including a group of my closest girl friends, and the rumor has it that there will be delicious food and lattes every morning. Hello!? Could you appeal to a pregnant woman more if you tried? I think not. It took a lot of convincing from both my husband and my friends to get me to go because I'm the type of person that does not want to be more than ten minutes away from immediate medical care while I'm pregnant, and the place we are headed to is over three hours away from Missoula. I initially said no way but I'm trusting that this weekend will give me some much needed relaxation and that God will keep this baby happy and healthy inside my belly for another month and a half.

Alright, I suppose that is enough tidbits for now. I will update soon with events from the retreat. Have a great weekend everyone!!!

Pregnancy

2011-04-15T11:27:00.000-07:00

I now fully understand what God was doing when he sentenced women with the pain of childbearing as one of the punishments for Adam's and Eve's sins. I once thought women were getting off easy if you were to compare the two punishments given: a lifetime of work for the men and just a few hours of painful labor for the women. Plus, some genius invented the epidural and so now we are given the option of skipping the pain altogether.

I naively thought childbearing was solely defined as the actual act of labor - the several hours of agony between when the first contraction starts and when the baby finally pops out. I now think that the word childbearing may actually reference the entire nine months of having to carry the baby, also. Because let me tell you, this is no walk in the park and I can almost hear God punishing me with these nine months for the consequence of my sin alone.

My first two pregnancies were a breeze. I may have been a little bit more tired than usual but even using that as a complaint is a bit of a stretch. I honestly don't remember much about when I was pregnant with Cale but I definitely remember my pregnancy with Riley as some of the best nine months of my life. It is how I felt with her that made me think I wanted to do this again. But now that I am doing this again, please let it be known and written in the history books that I will never, ever, want to do it again.

This pregnancy has been one-hundred percent different than the last two. My husband keeps wondering if his wife is ever going to return to him. I'm even wondering if I will ever return to me. I literally feel like I'm having an out-of-body experience, able to look on from afar and recognize how completely unreasonable I'm being and yet not having the energy or drive to do anything about it. The last few months have been a tad better, I'll admit, as I don't think Alex has had to peek inside the door when he gets home from work to see what kind of house he's walking into. I'm sure there were nights when he'd drive by the house and have the temptation to just keep on driving. That's what I would have done if I were him. You know it's true love when a guy can stick around through everything I've been putting him through.

Aside from my emotional instability, physically I feel like I've gotten hit and run over by an eighteen-wheeler. At just six months pregnant I've already had the pregnant waddle for at least the last two. I literally feel like one day I'll be walking down the street and !PLOP! my baby will fall out right there on the sidewalk. The pressure is indescribable. I keep going to the gym and trying with all my might to stick to my workout routine, but I'm pretty sure one of these times someone is going to have to escort me out in a wheelchair. I have it in my head that the reason I felt so great when I was pregnant with Riley was because I exercised nearly every day, and so logically if I just keep at it I will start feeling normal again??? I'm not too sure my logic is very good. I'm in a constant state of worry thinking, this cannot possibly be normal! Something is wrong! I lay in bed at night and cry myself to sleep because I am so afraid of having another premature baby. I've been down that road once and I know for a fact that I never want to have to go through that again. How does one NOT worry? I've prayed since the very beginning that God would give me peace throughout this pregnancy but apparently He's trying to teach me something that I'm just not able to get through my thick skull. I would love for just one day to be able to make it through without having an anxiety attack over thinking something is wrong.

Aside from all the worry and all the discomfort, I do remind myself daily that I am so blessed to be carrying another little human. I try not to complain because I know nine months is a blink of an eye compared to the lifetime I will have with this child, but man, it sure would be nice to not feel like my body has been invaded and taken over by aliens.

Pregnancy. What a journey!

Yes or No Questions Only, Please!

2011-04-08T10:50:00.000-07:00

I'm not sure if I mentioned in my posts about our trip to Denver how special it was to have a week's worth of one-on-one time with my boy. It brought me back to the days before Riley when all of my attention, love and affection could be devoted to just one child. That almost seems like a lifetime ago.

Having that week with just Cale brought me so much closer to him, I feel. I got to know him better, which seems silly considering I spend every minute of every day with him...what on earth could I possibly be missing? A whole lot apparently. He even fell asleep two or three times while I was holding him, which never happens. Cale has never been one to snuggle and he's an extreme creature of habit (just like his daddy) who refuses to fall asleep anywhere but his own bed. He won't even sleep in the car, which I think is just purely bizarre considering any length of time in the car puts me fast asleep. Cale relished in being able to push the elevator button every time, never being forced to share a turn with his sister. He got to play with his iPad without interference from Riley and never once had to listen to her drawn-out, hard-to-follow mythical stories. He always got to sit in the preferred spot in the grocery cart and always had a free hand to hold if he wanted extra support while walking. He was basically treated like a king and I loved every minute of being able to spoil him.

Something even more amazing happened during that week, though. For whatever reason, perhaps receiving feedback for every sound he made or every word he tried to say, he started gaining more control over his speech. He can now say yeah, uh-oh, and uh-huh (no). As long as you ask him yes or no questions, he can have a full conversations with you. It became clear to me how monumental this was while he was talking to my mom on the phone yesterday. Usually he signs his responses to her questions, which obviously does the person on the other end no good and which is why video chats are so great, but this time if she asked him yes or no questions he could respond with his mouth every time...and she could understand him!!! It is so fun to hear him use words and it gives me great hope to know that even if he isn't fully verbal, he will slowly gain more and more control over the sounds he is able to make.

Now if only he would learn to say mommy.

Birthday Bliss

2011-03-29T11:03:00.000-07:00

I turned twenty-seven years old last week. 27! I honestly still feel like I could blend in with the high school crowd, however when I look in the mirror and see more and more worry lines surface, I'm annoyingly reminded that I am indeed approaching, , thirty! How can that be?!?!

In years past I haven't been much a fan of my birthday. Birthdays were fun up until I turned eighteen but after that they lost that certain amount of excitement of turning a year older. So when my birthday came around this year I didn't really look at it much differently than any other day. My husband, however, had something else in mind.

He went above and beyond himself to make each part of my day special. It started off with little surprises in the morning and the surprises didn't stop until we went to bed. His goal for my birthday was to make me feel extraordinarily special and I must say that he more than succeeded. What a guy!

I was given several gifts throughout the day, always thinking they were my one and only gift, but my "big" gift was saved for during dinner. We went to Hu Hot per my request with Alex's dad and two brothers. I think he was saving this gift to give to me when there would be witnesses to capture my reaction. :) I don't remember exactly what the card said but after reading it I knew that his gift had something to do with photography. As many of you know, it wasn't unusual for me to take over a thousand pictures in one month but the past four or five months I have lost my passion for taking photos. Correction, I haven't lost my passion but rather gotten so frustrated with not being able to take the quality of photos that I'd like that I decided to stop all together. So my husband, being the intuitive and sensitive man that he is, found a solution to my photographing hiatus. He scheduled for me a six-hour, private, one-on-one session with a photography instructor at the Rocky Mountain School of Photography! I can honestly say that I think this was one of the best birthday presents I have ever gotten.

This last Saturday was my big day! I have to admit that I was so nervous and giddy about this day that I literally felt like a little kid on the first day of school. I met him at 8:00 and we got started right away. He got a baseline for what I already knew and we just went from there. We basically did book stuff for the first four hours and then he set me loose with a few assignments to complete for the next day. I spent the rest of the afternoon taking photos and let me tell you, it was heaven! The next day he critiqued my photos and answered the questions I had, and then he taught me a little bit about composition and photo editing. It was exactly what I needed to give me that boost into wanting to get back into taking pictures.

Being a stay-at-home mom I often feel like I don't have any skills to offer society. I don't go to a job and contribute to making a business successful, I don't get a paycheck for the hard work I put in, and there never seems to be any recognition for the work that I do do. Sure, I can be really good at wiping down counters and making lunches, but that just doesn't satisfy. No one ever comes into our house and says, "Wow! That's a marvelous pile of laundry that you just folded!" Photography, however, is something I can be good at (hopefully) and see lasting positive results. My kids will most likely be annoyed with my constant need to take pictures of them, but someday...someday...they will be grateful for the memories they can see in a photograph.

So, this year's birthday was definitely memorable. After telling Alex that he gave me one of the best birthday presents that I could remember he replied, "Well, crap! What am I supposed to do next year?", to which I quickly replied with, "There's always diamonds.".

Love you, A! :)

Denver: Part Three

2011-03-25T14:46:00.000-07:00

This will be my final post about our trip and then I promise to move on to something more interesting, or at least more positive and cheery.

I had such high hopes and dreams for this trip. People tried very hard, with little success mind you, to keep my expectations in check. Even Alex said a few times that he thought we would go all the way down there and have to come home with nothing fixed. I became quickly irritated with these people, not understanding why they just couldn't stay positive and dream along with me that this may provide us with the answers we had been hoping for. Negative people usually bring me down but I was determined to stay positive. This was going to work, I thought.

As you know, we came back knowing not much more than we did when we left. Cale endured a week of doctor appointment after doctor appointment, a trip to the ER and an overnight stay in a crib that looked more like a prison cell than a bed, and countless pokes and prods that I'm pretty sure have instilled a fear for doctors so great that not even a computer or cell phone will be able to distract him. As he became more aware of our surroundings, he quickly learned the driving route to the hospital and immediately started crying and trembling. Having to drag him through those hospital doors day after day made me feel like the worst mother in the world, wishing I could just whisk him away to some place where he could just be a happy four-year-old little boy. I often thought of the day when we could go on an airplane that took us somewhere other than another hospital. Disney World is going to blow his mind! Having to explain to over a dozen different doctors what is wrong my with my son very quickly became incredibly emotionally taxing. I want to go some place where people just look at Cale and tell me everything that is right with him.

I had a moment of clarity as we were riding the elevator to go to another appointment. Riding with us was a dad and his daughter, probably around the same age as Cale. She was hooked up to an IV and looked very sick...exactly the way Cale had looked just a few days prior when he had been admitted into the hospital. I suddenly realized that Alex and I are part of a very elite club, where its members know all too well what the others are going through. We don't stare at little kids in a wheelchair or at children tethered to IV poles. We don't make small talk in elevators asking how their day is going because we already know the answer.

I don't want to be a member of this club. I don't want hospital visits and doctor appointments to feel normal. I don't want to have to drag my son into a doctor's office while he's crying and telling me that he's scared, all the while faking my way through the phrase, "it's all going to be okay". I don't want to have to put on a brave front when in my mind I'm also running for the door at mach speed. Some day Cale is going to be able to see right through me, and then what?

Now that we've been home for over a week and we've made the changes in his medicine, I continue to find myself hopeful that these changes are going to work. I know in reality that if the medicine was going to help it would have started working by now, but each morning I wake up thinking maybe today is the day! Cale has almost seemed worse the past couple of days, thrashing and writhing in pain after he eats, and last night he threw up in his bed after we put him down for the night, but I'm still hopeful. I'm pretty sure that's the definition of insanity.

At the end of the day, Alex and I can rest in knowing that we as parents have done all that we can to help our little Cale. I suppose this is all just part of the process of elimination, and someday we will reach the end and have our answers.

Denver: Part Two

2011-03-24T13:09:00.000-07:00

I originally had planned to go into detail about all of our various doctor appointments and hospital visits, but then it dawned on me that most of you reading this probably don't care one, tiny ounce about the medical stuff. So instead, I will start off with our airplane ride down to Denver.

I have a deep phobia for flying. Just stepping foot into an airport gives me severe anxiety. I will often look up in the sky at an airplane and think to myself, "those poor souls...they have no idea they are about to die". I'm fairly certain that any airplane I see, or heaven forbid have to fly in, will without a doubt come crashing to the ground at any given second. I. Hate. Flying! Moving along, our flight down to Denver was really nothing too out of the ordinary, except for the million or so bumps we encountered along the way. Turbulence is something I only overreact to when it occurs during takeoff, and fortunately the only bumps during this flight occurred mid-flight and during our landing, so I was able to hold it together rather well. I still don't like it, but I can tolerate it...mostly. Cale, on the other hand, thought turbulence was the greatest thing since sliced bread! Each and every bump would without a doubt cause fits of giggles and squeals of pure delight! He quickly endured himself to the flight attendants and those sitting around us. Alex, however, whom has never gotten motion sick, started to turn green. I've never actually witnessed someone's face turn green due to nausea, but Alex was definitely a different shade of color than I'm used to. He had to reach for the little bag a few times but thankfully never needed to use it. Good times.

From here on out Cale will definitely have the mindset of the more bumps, the better. And when you ask him what Mommy does on the airplane, he covers his face with his hands. I didn't think I actually went to that extreme but apparently my instincts take over when I'm paralyzed in fear.

And now for the brief summary of what happened while we were down in Denver. My initial assumption of our stay there was that Cale would be admitted into a hospital and receive 24/7 observation and care. It turned out to be just many scheduled doctor appointments which left us with a lot of free time, and that turned out to be absolutely marvelous. Our first appointment of the week started off with a bang. During our chat with the GI doctor, Cale started doing his thing and threw up right in front of him. Perfect! Someone is finally going to see the reason behind us traveling all this way! Throwing up is very typical for him but this time he threw up blood. Not typical. The GI doctor talked with us a little more and decided to admit him into the ER just to make sure nothing really serious was going on. That ER visit turned into a overnight stay at Denver Children's Hospital. They monitored him through the night and we continued with our scheduled appointments the following day. He was due for an upper endoscopy and a colonoscopy which meant he would be under anesthesia for those procedures. It's never easy to watch your baby be put to sleep. After about an hour the doctor came out and showed us the pictures he had taken, which all appeared to be perfectly normal, and then told us we would have to wait through the weekend to receive the results from the biopsies. Also, they could see no cause for the blood in his vomit. At this point our hearts are heavy because we hate to hear the word normal. Cale has got to be the most abnormal normal person I have ever met. The rest of the week was filled with appointments with an allergist, therapist, and geneticist. The allergist agreed with us that whatever was going on with Cale was not due to an allergy and so he cancelled the two skin prick tests that were scheduled. The therapist mainly talked with Alex and me, making sure that we had the resources back home to successfully deal with the emotions that go along with having a child with special needs. The geneticist appointment resulted in doing more genetic testing and confirming that the two MRI's Cale has had were in fact normal. No surprise, the radiologists agreed his MRI's were normal. The genetic tests that were run will take about two months to receive the results. So...we wait.

So you might be wondering what on earth did we travel all the way to Denver, CO for to learn nothing. I have very mixed emotions about how our time down there was spent, and I will go into more detail about that in my next and final post, but there are a few things we did learn that were helpful.

The pH level in his stomach is very low, meaning he is very acidic. This shouldn't be the case because he's been on medicine since he was six months old to lower his acidity. So, the doctor increased the dose of his acid reflux medicine and added a new one to hopefully help with the pain of having acid reflux.
The biopsies that they took during his scopes showed that he does not have the diagnosis of eosinophilic esophagitis, which the GI doctor we saw in Seattle had initially given him.
Whatever is causing Cale so much pain and causing him to vomit is not due to an allergy! A last minute skin prick test, however, showed that Cale is allergic to egg which means that when he does start to eat things again we probably shouldn't start out with scrambled eggs.

So there you have it. The only changes we made coming home was an increased dose in his medicine and a new medicine to help with acid reflux.

More to come!...

Denver: Part One

2011-03-19T15:36:00.000-07:00

The days ticked by S L O W L Y as we anxiously awaited our visit to Denver Children's Hospital / National Jewish Health Center. It was torture to watch Cale in so much pain and not be able to do anything but wait.

We were at our wits end in November, in tears almost daily, and the soonest they could schedule Cale wasn't until March. I think the last four months have been some of the hardest ones we've come up against, even trumping the days after Cale was diagnosed with significant developmental delays, which I account to some of the darkest days of my entire life. Watching the joy and innocence sucked from our little boy's life was unbearable. March could not, and did not, come soon enough. The phrase I caught myself repeating over and over was, "someone IS going to help us or all hell is going to break loose!". I was determined not to leave that hospital until someone fixed him. Mama Bear was about to get angry.

As March 9th approached I found myself excited and almost giddy. My spirits were high and I was beginning to see little glimpses of hope. This is going to work!

We left on a Wednesday and the previous Sunday the elders at our church offered to pray over Cale and our trip. We met in our pastor's office before the start of the service and as I entered the room I realized I didn't recognize half of the eight or nine men that were sitting in a circle waiting for us. We gave a brief summary of Cale's history and the challenges we have come up against, while also explaining the purpose of our trip to Denver and our hopes that went along with it. Most of the elders had a bible verse or words of encouragement prepared in advance to share with us, and as Alex and I both wept unashamedly, we saw that many of the grown men sitting around us were weeping also. These were men I had never met and who had never before met Cale, but their genuine care and empathy for our family was so evident that I will forever remember this encounter. When it came time to pray over Cale our pastor anointed him with oil, and one by one each elder began to pray for Cale's healing. I've prayed this prayer many, many, many times before and have not gotten an answer, but these individuals were so confident in their approach before the Lord that I left that office almost anticipating Cale running away from me and joyfully yelling, "Come catch me, Mom!", followed by "Can you take me to McDonald's to get a Happy Meal?". That obviously didn't happen but I know that the Lord heard their prayers and that He was pleased in our coming before Him. It always amazes me to be reminded of just how many people love and care for our family. It truly warms my heart.

On Tuesday, the day before we left, Alex came home and told me that he got a call from someone at our church. They had decided to give us a check for $1,500 to help pay for the expense of our trip. Alex told them that our plane tickets only cost $1,100 and that they were going well beyond anything we could have ever expected or hoped for, but they insisted on giving us the full amount to also help pay for food and hotel costs. Again, we are so loved and so blessed to have such a generous and caring church family!

Wednesday morning finally came and I was so excited to finally be able to say that we were leaving! I was even so excited that I didn't cry once during our flight, which for those of you who know me well recognize this as monumental! We were finally on our way to getting the answers we needed and the help we longed for.

Part Two still to come...

The Mile High

2011-03-18T17:27:00.000-07:00

Alex, Cale and I are finally home after our week-long stay in Denver! We spent an entire week going from doctor appointment to doctor appointment, hoping to finally receive some help for whatever seems to be causing Cale so much discomfort, pain, and weight loss. There is so much to write about and so I think the best way for me to update all of you is to do it in three parts. So, keep checking back!

Before I go on about Cale, however, I just want to thank everyone who prayed for us and sent encouraging messages. It was an emotional week and having the support from so many of our friends and family kept us strong, and sane. :)

More to come!

New Life

2011-02-21T12:54:00.000-08:00

I've been sitting here for the last thirty minutes enjoying the unexplainable sensation of feeling our baby move inside me. Even though it is the third time around experiencing this, it never gets any less amazing. Life truly is one of God's greatest miracles.

As I sit here looking out our window, I see the city of Missoula covered in snow. I can barely see the surrounding mountains due to the blowing snow and it makes me wonder if Spring will ever come. The forecast for this week is snow, snow, and more snow. I've never seen a winter like this since I moved to Missoula.

Alex and I took Cale, yet again, to the doctor this morning. Yesterday he started spitting up black mucous, which is especially odd considering he only he eats one thing and it's white. I called his doctor this morning just to make sure it wasn't anything we needed to be worried about, because you all know I would just love to have one more thing to add to the list, and she recommended we come in because she was concerned he might be spitting up blood. They drew his blood and will call later today if something unusual or alarming shows up. A part of me is hoping his blood tests will show something so that we can avoid being told "it's just one of those Cale-isms that can't be explained". I'm emotionally exhausted from never getting any answers to anything. My poor little guy is suffering and no one can do a darn thing about it. Why God won't bring his healing hand upon my son is something I don't think I'll ever understand.

One thing I've always held on to since the very day Cale was born is that God was in control. He loved Cale exponentially more than I did and He would always bring purpose and hope to our lives. Every detail of Cale's life was planned. Every doctor visit was known about in advance. Each medical mystery to us was never a mystery to Him. But now, for the first time that I can remember, I feel abandoned. Why allow a child so much suffering? I'm doubting that God is using this time and this situation for a greater purpose.

Right now I'm watching Cale thrash around in pain. He just ate and his stomach is visibly upset. I wish I could just not make him eat but he continues to lose weight and it's beginning to get dangerous for him. The thrashing used to be something Cale would persevere through but now I'm seeing him give up the fight. He spends 80% of his day laying down because that's the only position where he can maintain the most control of his body. I looked through pictures of the kids playing outside this summer and I saw a happy boy, walking barefoot in the grass, showing no signs of whatever is ailing him now. I never knew to be so grateful for those days. I never knew I would long for them again so badly. That happy and active boy in those pictures is someone I barely recognize.

I wish I could be excited for this new baby. Feeling him move is amazing but I'm so scared for the day when he arrives. The demands of caring for a newborn and Cale is something I can't even fathom.

Joy. Peace. Hope. Please come back to me soon.

verbs

2011-02-18T19:25:00.000-08:00

Scared. Worried. Frustrated. Heart-broken. Guilty. Depressed. Overwhelmed. Sad. Angry. Impatient. Bitter. Dissatisfied.

Thankful. Hopeful.

These are words, both good and bad, describing my state of mind as of late. As you can see, the bad clearly outweigh the good. Life has been incredibly difficult over the last couple of weeks and I find myself climbing an impossible mountain. Cale's disability has taken a huge toll on me and my family and it seems as though all joy has been stripped from us, from me.

I find this road of raising a child with special needs to be painfully lonely. No one can possibly understand the heartache and the difficulty of it all, nor would I expect them to. I rarely, if it all, let people see my true emotions. I only write about them here. I spent the majority of today in tears, wanting nothing more than for something to go right for a change. Cale's health and mood continue to get worse and I'm exhausted from caring for him. I love him with all of my heart but breaks are few and far between, which is unfortunately taking a toll on my ability to be the best mom to him. My patience is thin and I'm constantly angry with myself for not being able to be better for him. I've been treading water for far too long and I'm drowning.

As Cale gets older I'm realizing more and more how different our life has to be from our friends' lives. Alex and I are figuring out that he or I can't just have a night out because it leaves the other one with a huge burden of caring for Cale on their own. Date nights are near impossible to plan, which is especially difficult for me to accept because going out on dates is something I need just about as badly as I need water. They are vital to my soul and I rarely get them. I'm also beginning to experience the sad reality that Cale's peers don't ask to play with him. I watch my friends' kids get invited over for play dates, but I can't remember the last time someone called and wanted Cale to come over. I thought I wouldn't have to deal with this until he was in grade school but I suppose that was just naive of me. Cale is different, therefore he will be treated differently...no matter how hard I fight for him.

As I read other people's blogs and get a peek into their lives, I'm reminded of how much I hate that most of what I write about are my struggles. My nature is to be a happy, optimistic, and full-of-life kind of gal, but sometimes I just need to get out that life sometimes sucks. The reality for us is that life is hard and we've been given a situation that makes it even harder. I would certainly appreciate your prayers as we try and navigate this road as best as we can.

It's a BOY!

2011-02-01T05:49:00.000-08:00

I had originally planned to wait to share this news until someone had the guts to ask me if I was pregnant or not, but apparently all of my friends are smarter than that and so I finally just decided to come out with it - I'm pregnant! And we're having a boy! :)

This new addition to our family truly is God's way of slapping me in the face and reminding me that HE is in control. Rewind about four months ago and you would have found Alex and me making the decision that after trying for a baby, getting pregnant and miscarrying, and then trying for another baby without success, that it was time to put an end to this emotional roller coaster and do something permanent. Permanent is a heavy word but we didn't come to this decision overnight. I had been praying for about six months that God would either give us another baby or completely take away my desire for another child. Well, about a month before we got pregnant I felt an incredible peace about not having any more children. In fact, I had come up with a million reasons why I didn't want any more kids. I figured God had answered my prayer and taken away my maternal desire. I remember marching downstairs while Alex was fixing our internet and telling him that I had decided we were done trying - no more kids for us! Being the wonderful husband that he is, he just said "okay". Our decision was made.

I called my doctor and made an appointment to discuss semi-permanent birth control options. They scheduled me for one month later.

The day of my appointment came and I was reminded of a conversation I had had with the nurse a couple of days earlier. She asked me if there was any possible way I could already be pregnant because it would be unsafe to start birth control if I were. Being the paranoid person I am, I decided to take a pregnancy test just to be on the safe side. I nearly passed out when I saw those two pink lines slowly become visible in the window.

WHAT?!?! But I prayed about this and God completely took away my desire for another child! This isn't part of the plan...I don't want this anymore...I don't want to be pregnant!

I walked around the house in a daze for the next hour. I paced back and forth, shaking. I felt guilty for immediately having feelings of regret. How did this happen? Not knowing what else to do, I called my doctor and cancelled my appointment. I thought about calling Alex and crying to him over the phone, but I didn't want to freak him out and telling him at work was hardly the appropriate place to deliver this kind of news. So I just kept pacing.

Fast forward four months and here we are. I am almost 17 weeks pregnant and we just found out we're having a boy. I wish I could tell you that I've come full circle and that I'm thrilled about this new baby, but I just can't. Don't get me wrong, I am incredibly thankful for this gift of new life, but now that I've had time to process things I find myself paralyzed with fear. I'm scared beyond words about carrying this baby to term, and while I was aware of nearly every possible pregnancy complication when I was pregnant with Riley, those fears somehow never found a way to creep in. This time around, however, everything that could go wrong is all of a sudden this huge blinking light staring me in the face every minute of every day. I've prayed tirelessly that God would give me the kind of peace He gave me when I was pregnant with Riley but for reasons only He knows, He has yet to answer my prayers. Peace is so hard to come by these days.

Despite these fears, I've found myself marveling in the love I have for Cale and Riley and just knowing that I am going to have another child to love that much makes me extremely grateful. And a little boy no less! I can't wait for Cale to have a little brother and I have to admit that I was a little relieved to know that the only estrogen in our house will be coming from either me or Riley...our house can't handle any more than that! :) Alex can't handle more than that...

Our little boy is set to arrive on July 18th - two days after Riley's third birthday! Here's hoping he behaves and stays put until then!

A better start to hopefully a better day!

2011-01-28T06:12:00.000-08:00

Today started off much better thanks to two angelic children who slept in until 8:00. As Alex and I would say, "PTL!", which is our way of quickly saying Praise the Lord!

Our nights have been rather miserable the past couple of weeks. As I mentioned in an earlier post, we have decided to bid adieu to nap time in hopes that the kids would go to bed a little easier and a little earlier. Our theory worked for a few nights but Cale has returned to screaming and basically making bedtime a part of my day that I dread. It reminds me of having a newborn and dreading night to come because even though you long for sleep so badly, you know you aren't going to get it and so the night becomes this object of misery. That is what I feel like these days. Not only does it take the patience of Job to put Cale down for bed, but to add on to an already difficult situation, he has been waking up five or six times in the middle of the night screaming in sheer terror. At times I think someone has broken into our house and is torturing him. It's that bad. At first I thought he was in pain but recently I've noticed that even though his eyes are open, he doesn't seem to be fully awake or aware of what's going on. He won't respond to our questions and he'll usually falls back asleep soon after we are able to calm him down. That is, if we're able to calm him down. His speech therapist thinks he might be having night terrors but I'm going to give it a couple more nights before I fall into that theory.

Oh yeah, I was supposed to be talking about how this was going to hopefully be a better day. As I write this sentence, it is actually a day after I wrote the above paragraph. The "better day" was actually yesterday because let's face it, sometimes kids don't understand your need to blog. Even though it's a day later, I can still tell you why yesterday was a better day.

Life is still seemingly unbearable most of the time. I constantly feel like I'm failing as a parent and the kids seem to be testing me more and more every day. Cale still walks around the house doing his "pout walk" and it takes every ounce of my energy to make him happy. But I do it. And I still have reserves left over at the end of the day to make dinner for our family, keep the house relatively clean and be pleasant towards my husband. Nothing about our situation seems to be changing and yet I am able to have days like I did yesterday. I even let the kids play with play-doh! I took them to the mall and let Cale walk around the new On store, which is loaded with computers, phones, iPads, iPods, TV's...things a normal child would run past as they headed for the gum ball machine or toy store...but not my Cale. The On store is his Disney World. I even took them to Barnes and Noble and let them tear books off the shelf as I patiently walked behind them, picking up and placing each book back in it's rightful place. I think in the past day I have read over 100 books, and 50 of those books has been the same one over and over again. I let them make messes and I don't even get grumpy when I look around and see that it looks like some sort of natural disaster has come through. I somehow have gained patience, and with that has come grace and love.

I say these things not to toot my own horn, because trust me, I am no where near a perfect mother. I say these things to give evidence to how God is able to restore a tired and broken soul. I've really been forced to depend on the Lord for daily living the past few months and at first I wasn't able to see Him working in my life, but then I'm able to have days like yesterday and see that even though God hasn't answered my prayers, He is changing my heart, and sometimes that's more of a miracle than anything else. Especially when it's my heart in need of change.

Here's hoping for more days like yesterday.

Blah!

2011-01-26T14:30:00.000-08:00

I feel like I am in one of those ruts again. The kind of rut that leaves me lacking joy in nearly everything. I hate when I get like this because everything seems so utterly hopeless, and yet I know in my head that that couldn't be farther away from the truth. I know I have hope but I want to physically be able to feel it, and for whatever reason I just can't. This sucks.

Cale is at the center of my hopelessness. I feel as though God just doesn't care about the misery going on in our lives. Does He not see how desperate we are down here? And if He does, why isn't He doing anything about it? Why do our prayers go unanswered? It would be tremendously helpful to understand the will of God.

I don't want to just sit here and rant about all of the things that seem to be going wrong in our lives, but I do wish there was someone who could know my suffering without my having to tell them. I feel like I all too often put on a brave face and try to be Super Mom, but the truth of the matter is that I hate Cale's disability. I hate what it does to our family and to me individually. I feel like it robs me of my joy. Each day is just another twenty-four hours I'm forced to get through. I don't want to live to just so that I can get through it faster...I want to enjoy life and make the most of this short time we have here. These days I feel like that's impossible. I want to wake up and be excited for the day ahead. I don't want to wake up with the same twinge of trepidation in my stomach.

I went to dinner last night with a group of moms that all have children with special needs. I love these times because it's the only time other moms understand why it's necessary to be constantly obsessed with their children's bowel movements or why having therapists in and out of your house all week long is so draining. They understand my worries about Cale's future and can equally share in the joy of something as small as Cale swallowing a bite of apple sauce. I don't have to tell them how much life can suck sometimes because they are feeling the same way. I don't have to explain how it's possible to love my child so much but yet feel as though being around them is sometimes unbearable. They get all this because they live this. It's with these moms that I am free of the guilt from having these thoughts.

I want so badly for Cale to be healed. I want to know the sound of his little voice calling out "Mommy!". I want to watch him run and jump on our bed and beg to watch cartoons. I want him to get mad at me for not letting him have sweets before bedtime. I want him to love himself.

Five Whole Days...

2011-01-21T14:30:00.000-08:00

...with no naps.

Yes, it is true. I have purposefully gone five entire days without giving my kids naps, and somehow, by the grace of God we have survived. Or should I say, I have survived. My kids are loving it but I am already grieving the loss of those two hours in the afternoon that I could call my own.

I think the saddest part of this new change is the fact that I've realized they don't need a nap. I thought they would go a couple of days bouncing off the walls at the realization of their newfound freedom and then eventually by the third or fourth day I would find them passed out in a bowl of Cheerios, but no. They seem to be thriving and it's incredibly hard for me to see. I'm not sure how life can go on without naps.

I started what I thought was going to be just an experiment. Both kids, but especially Cale, were having a hard time falling asleep and waking up frequently throughout the night. I thought when 9:30 rolled around they just weren't tired enough, but since my bedtime is 9:00, I wasn't about to stay up even later until they finally settled down. I need my sleep. So I thought I would see if going without a nap would make the bedtime routine a little easier for all of us. Fortunately, bedtime has been much more pleasant and so far each child has gone to bed without a fight and they haven't woken up during the night, either. Success! But again, I'm still grieving the loss of nap time.

One thing I am looking forward to about this change is the fact that since they are now going to bed closer to 8:00, Alex and I finally have some time with each other after the kids are down. I value alone time with him so much and I'm usually griping that we don't get enough time with just the two of us. Now, we can pick one night a week where we put the kids to bed and can enjoy a romantic dinner for two. It's not the conventional way to go about date night, but hey, I'll take whatever I can get!

Me! Compassionate???

2011-01-18T09:08:00.000-08:00

I've been asked many, many times what gifts or qualities God has given me that help make me a better person. For years my answer has always been that I am a compassionate person, easily able to sympathize with another person and put myself in their shoes. It's comes very easy to me and it's a quality in myself that I am incredibly thankful for.

Last night and this morning, however, compassionate would have been the last word I would have used to describe myself, and consequently I am left broken-hearted, feeling like the worst mother in the world.

At around three o'clock this morning I was suddenly woken up by my four-year-old crying and screaming at the top of his lungs. The past few nights we have battled rather tirelessly to get him to go to sleep without doing this very thing. He's as happy as a clam when he lays down to go to bed at night but then as soon as we close the door to leave he starts crying. This is very unusual for him since he's been the best sleeper since the day we brought him home from the hospital. I thought perhaps he just wasn't tired enough when it was time to go to bed and so yesterday I decided to skip nap time in hopes that he would fall asleep more quickly. My experiment worked, to a point, because he did go to bed far easier but then here he was, at three o'clock in the morning, screaming and showing no signs of going back to bed. Alex and I took turns battling with him until it reached a decent hour to be up for good. When I finally did let him come out of his room, he continued to cry uncontrollably and nothing I could do or say would console him.

Exhausted and sleep-deprived Erica is a person no one wants to meet. I'm crabby, irrational, and have zero patience for just about anything. Add a crabby child into the mix and it's a recipe for disaster. I made the kids breakfast, made myself two cups of coffee knowing that it was going to be a V E R Y long day, and sat down on my kitchen floor and just started sobbing. (When I run out of options and don't know what else to do I usually resort to crying.) I felt a little better after having those few moments to myself and so I wiped away the tears and decided it was time to go and apologize to Cale for losing my patience. I walked into the room where he was, got down on my knees, and asked for his forgiveness. He started crying, again. God must be really trying to teach me something through this, I thought through bared teeth. Regardless, I gave him a hug and decided to change his diaper and get him dressed.

This is the point where I wish more than anything that Cale was able to speak and tell me what is wrong. I wish more than anything he could tell me when something hurts or when he's scared, angry, or sad. I would be a lot better at showing him compassion if I knew what was wrong instead of assuming he's just being an unreasonable four-year-old.

Cale woke up at three o'clock this morning because he was in pain. At some point during the night he must have had diarrhea (sorry, TMI) which caused one of the most terrible diaper rashes I have ever seen. He was one big flaming fireball and suddenly the wave of guilt hit me so hard it nearly knocked me over. His crying was justified, his screaming had a purpose, and my loss of temper and patience was completely and utterly uncalled for. I feel like the worst mother in the world. I have compassion for the stranger on the side of the road holding a cardboard sign, but yet where is the compassion for my own son - the one person in this world I would die for?

Some may think I'm being dramatic, and I'm sure in a few weeks I will have forgotten all about the events that transpired in the last twelve hours, but God really showed me my need for patience and compassion, especially for Cale since he lacks the ability to speak for himself.

Leave it to God to show me that an area of my life that I had pretty much figured out actually does indeed need a lot of improvement.

Nothing really worth posting about but I promised I would...

2011-01-13T12:54:00.000-08:00

I've sat down at my computer every day since I last posted, with the full intention of following through with the goals I listed for myself this year, but each time I've done so I realize I have nothing interesting to write about. My days are pretty mundane, following the same routine every day. Wake up, feed the kids breakfast, play until Cale's therapists arrive or take him to school, eat lunch, take a nap, make dinner, and go to bed. Winter, I've discovered, is far less exciting as an adult than it was when I was a kid. I can't wait until my kids are old enough to fully participate in winter activities. Then, and only then, will I pray for snow.

We do have one thing planned on the horizon. Cale, Alex and I are traveling to Denver in March to spend an entire week at Denver Children's Hospital. I'm not sure if I've talked much about this, but doctors are speculating that Cale may have certain food allergies that are causing a disease known as eosinophilic gastrointestinal disease. It's a big name that characterizes inflamed intestinal tissues containing abnormally increased numbers of eosinophils, a specific type of white blood cell often associated with allergic disease. To make a long story short, you may remember previous posts about Cale's vomiting and discomfort after eating meals. That was when we traveled to Seattle and Cale underwent a colonoscopy and an upper gastrointestinal scope. Doctors found the presence of eosinophils in his esophagus and bowels which lead to the diagnosis of this disease. Since then, Cale's vomiting has gotten significantly worse, to the point where we were changing his bed sheets during every nap time and bedtime. Cale was throwing up eight to ten times a day and we became increasingly worried about his weight and nutrition. If you or I were throwing up eight to ten times a day for months and months we would have wasted away to nothing. Cale did lose weight but somehow he never became malnourished. We were referred to an allergist here in Missoula and she recommended that we start Cale on a hypoallergenic formula, all the while eliminating all other foods from his diet. This was extremely disheartening and frustrating since we were finally starting to see progress in his eating of solid foods. He has been on the hypoallergenic formula for just over a month now and although his vomiting has decreased (he usually only throws up about once a week now), he still shows extreme discomfort after eating that prevents him from being able to engage in the activities he would like. When we talked to his pediatrician last month, I just wept in her office and begged her to get him in sooner to see someone that could "fix" this problem. I was done cleaning up vomit every twenty minutes and I hated getting Cale dressed in the morning only to find that the clothes that used to be too small for him were now too big. I can't even explain the worry. March, his pediatrician explained, was the soonest anyone would be able to see him. So, we fly to Denver on March 9th and return on the 17th. We've been told this hospital has the best program in the nation for this type of diagnosis and disease so I'm very hopeful that we will finally get some answers. The best part is that even though Cale will be in the hospital for an entire week, we will be able to take him back to our hotel at night so that he doesn't have to spend the night in a hospital bed! Another bonus is that my mom is planning on coming with us so we will have the extra support.

Enough of the medical stuff. In other news, Cale and Riley are doing pretty fantastic. Cale has finally learned how to go up and down the stairs all by himself! He's always been able to go up the stairs on his own but he definitely preferred to be carried. (When I say he goes up and down by himself, he crawls up and scoots down...we're still working on walking up and down them) One day I got the bright idea to just tell him "no" to being carried. You have the ability so by golly you are going to use it. I have no clue why it took me years to figure that one out. He still whines and sometimes even cries when we tell him he has to do it on his own, but hopefully he will soon forget all about the days when he used to be carried. Riley cheers him on and they have fun seeing who can get down the stairs the fastest. Cale and Riley are also starting to get the concept of playing board games which has been incredibly fun to see. They do a great job of taking turns and since they're still young enough, neither one of them has learned how to cheat...it's great! I can see many board game nights in our future. Riley continues to be her spunky self. She is speaking in full sentences and going to the bathroom on the big girl potty 90% of the time. She loves playing with stuffed animals and putting on mommy's lip gloss. She randomly comes up to Alex and me to tell us that she loves us which is probably the best feeling a parent can ever experience. She's becoming more and more independent each day and I can just see the years flashing before my eyes. Pretty soon and she'll be wanting to shave her legs and wear a bra!

Yesterday I attended BSF (Bible Study Fellowship) for the first time. It's absolutely perfect because I can drop Cale off at school at 8:45, be at the church by 9:00 when BSF begins, and then be home in time to meet Cale off the bus at 11:15. They have a terrific children's program and I can already tell that Riley is going to love it! I'm excited for BSF because it will force me to get into the Bible each and every day.

Well, I guess I had more to talk about than I originally thought. :) I hope everyone's year has gotten off to a great start and hopefully I'm able to keep up on a pretty regular schedule of blogging.

retraction

2011-01-04T13:05:00.000-08:00

In my last post I admitted to not really believing in making New Year's resolutions. I've made them in the past, when I was in junior high and high school maybe, and they lasted all but four days...max. I remember one in particular, which was to not drink so much diet soda. That one only lasted a few hours.

This year, however, as I got to thinking about ways I could improve myself this coming year, I thought of a few ideas. The first one is something I've wished I was better at for several years, and that is getting better about having my cell phone with me...and actually answering it when it rings. I'm terrible with my cell phone, and "terrible" is probably an understatement. I got a little better with it when my best friend reached the end of her pregnancy because I wanted to make sure I was around when she made the call to tell me she was finally in labor. Now that her new baby is almost one month old, however, I've slipped back into my awful ways. In fact as I type this I have no idea where my phone is, and even worse, I don't care enough to go looking for it. My husband has accepted that my lack of concern for my cell phone is just a part of who I am. He still gets irritated from time to time, especially when I ask to use his phone when I don't know where mine is, but for the most part he's learned to just smile and shake his head.

My next idea is a little more practical and far easier to obtain. Sometime during the last several months I have lost my passion for taking photos. My theory for this is rather pathetic but I'll share it anyway. I'm incredibly frustrated that I can't take better pictures. I don't need to take breathtaking photos in order to be happy but I'd like to call myself a "good" photographer some day. I'm far from that and I suppose I've found it easier to just give up rather than put in the work it takes to get to where I want to be. This year I not only want to get better at snapping quality photos, but I also want to learn to be okay with not being able to capture the "perfect" picture. When I'm older I most certainly won't care about exposure or that sort of thing, but rather the fact that I have so many fantastic memories to look back on. Who cares if the lighting isn't flawless.

My last idea is something I can definitely do without too much effort. I desperately want to get better at blogging and for whatever reason I seem to be on this trend of only blogging every other week. I want to change that and so I shall.

So I guess you could say I'm making a few resolutions for 2011. :)

Cheers!

2011-01-03T16:44:00.000-08:00

We survived Christmas Eve!

In my last post I talked about my fears and insecurities of sharing at our church's Christmas Eve service, but that has since come and gone and I feel fairly confident in saying that I held it together rather well. The Sunday before Christmas, a man in Alex's and my Sunday School class reminded us that Satan would be on high alert that week, trying to find any and all ways to bring doubt and conflict into our lives. Keeping that in mind, I felt very much at peace leading up to the service. Minutes before we were about to walk on stage, however, I looked at Alex and very seriously told him I thought I was going to throw up. I was already planning my exit plan should I actually need it. As soon as I took the first steps up the stage, though, an overwhelming peace flooded all over me and I didn't have one ounce of nervousness. God was definitely with us that night. I cried, much to my prediction, but never hard enough to prevent me from speaking clearly. Success! Since then, many people have come up to us and thanked us for sharing our story. One man in particular shared how his mother had been at church that night, and I'm assuming she's not a regular attendee, and said our story really touched her and that seeing his mom that way made his Christmas. That has been Alex's and my hope all along...that our story might somehow impact a person's relationship with Christ. I hope to hear more stories like this as time passes on.

Once the services were over, Alex and I could officially start celebrating Christmas! We spent Christmas Eve at family's house whom we had never met. Alex's parents are in a small group with them and so we tagged along for appetizers and desserts.

Christmas morning was exactly how we wanted it. The kids woke up leisurely, and we spent about thirty minutes unwrapping gifts that took hours and hours to purchase. I suppose I should start getting used to that. The kids were spoiled beyond imagination and within a few hours after opening gifts, they were back to playing with their "old" and "boring" toys. Again, I will be preparing myself for this next year.

We had Christmas dinner at Alex's parents house and it was the first time in who knows how many years that they had all three of their boys under one roof for Christmas. (Alex has two half-brothers, one who recently moved here from Seattle) Grandma and Papa spoiled the kids, too, so we had a load of new gifts to haul back home. Riley's favorite gift? A music set - complete with maracas, triangle, AND tambourine! The joy emanating from me right now is huge! (insert sarcasm) It was a perfect, quiet Christmas.

The next day we packed up our things and drove to Billings to spend a few days with my folks. The kids were, again, incredibly spoiled. I'm amazed we had enough room in our car on the way home to bring back all the gifts. We went sledding one of the days after picking up my niece from daycare, and we had a BLAST! I think the adults had more fun than the kids, being that Riley covered her eyes EVERY time we went down the hill. She claims she wasn't scared and that she had fun, but I'm not buying it. :) Cale, on the other hand, wasn't satisfied unless he was going faster and farther than everybody else. We ate a lot of incredible food, had a lot of laughs, and returned home to spend the remainder of the week as just the four of us. Alex's office is closed the entire week between Christmas and New Year's, which I am entirely grateful for, and so we had an amazing week as a family. Alex and I watched five or six movies within the week which is definitely a record for us. It was definitely a somber morning today when I woke up to the daily grind of another Monday. Blah!

I've been asked my several people if I have any New Year's resolutions. I've never been the kind of person to make resolutions and so I generally avoid this whole tradition without too much thought. This year is much of the same. I do, however, feel that this coming year will change our lives forever. Here's to hoping I won't be disappointed!

Cheers!

Four Words

2010-12-15T12:27:00.000-08:00

"God. Is. With. Us."

I have been thinking about those four words a lot lately. With Christmas only days away, I'm loudly reminded of the day that God stepped out of Heaven to become one of us. He chose to walk among us and die on a cross, not only for my sins, but for the sins of this world. He made a way for us to always have a relationship with Him, and Him with us. God is with us, always.

Alex and I were asked a few months ago to share at the Christmas Eve service how those four words have impacted our life, with special focus on how it's impacted our journey with Cale. When we first agreed to this I was ecstatic! I was so excited to share our story with the congregation of our church, especially since so many of those people have been with us since the very first day Cale came into this world.

Now with the Christmas Eve less than two weeks away, I find myself at a loss for words. I have so many thoughts floating in my head but no way to do them justice merely through words. I'm imagining a sanctuary full of people, many who probably do not know Jesus, and me wanting to say something profound and meaningful that might draw them to my Jesus. I want people to see the existence of a living God through our story but I'm having such a difficult time forming my thoughts into words that will do just that. At this point I'm really just relying on God to take over as soon as I walk up on that stage.

I'm also doubting the person's decision who decided that Alex and I were the best people to share a testimony. I know several people who have been through, or are going through, many more difficult things, and these people could probably do a whole lot better at conveying their point to thousands of people. Why us? The irony of this is that once the shock of finding out Cale was different wore off, Alex and I dreamed of being able to do something like this. We wanted the situations God had given us to draw people to Him; to have people see God in the way we lived our life. Now we've been blessed with this incredible opportunity and all I want to do is stay in bed with the sheets pulled over my head until Christmas is over.

Perhaps I could get inspired by some of your thoughts. How has the phrase, "God is with us", impacted your life?

Please, Christmas! Don't come too quickly this year. I need more time!

In the blink of an eye

2010-11-26T16:26:00.000-08:00

Facebook has the uncanny ability to flash pictures across my screen, reminding me of good times gone and times I wish for again. Most of the pictures I'm talking about are the ones of our vacation to Cabo earlier this year, but occasionally I see older pictures of when my kids were babies. I see those tiny faces and all of a sudden I'm clicking through hundreds of pictures, tears welling up in my eyes, and wishing for them to be that small again, even if it was just for one day. When did I become this person?

Pictures of Cale usually drudge up painful memories and remind me of how hard things were when he was smaller, but occasionally I'll come across a photo of him sitting up for the first time or taking his first steps and I immediately become all weepy and wish for time to slow down. Pretty soon he'll be marching off to kindergarten and it'll be the beginning of the end.

The pictures of Riley as an infant are usually the sure-fire ones to bring tears to my eyes. I have no idea how I kept calm when I realized I was pregnant with her before Cale even turned one, but I didn't know any different so I was naive and just thought, "hey, we're gonna have another baby!". Complete craziness. When she was born, and I could escape from all the worry of whether or not she was going to be a normal developing child, she introduced immediate joy to our lives. She was always the prime subject of laughter and lightheartedness. I know God gave her to us for many perfect reasons, most of which we have yet to discover, but I'm pretty sure his main purpose in those early months was to lighten us up so Alex and I didn't become permanent, dull pessimists. How could any one person not be happy when they're around Riley? She truly has grown from an infant to a young girl in just the blink of an eye. Why couldn't have time moved this fast when I was younger and waiting for Christmas to arrive?

We are celebrating Cale's fourth birthday with all of his friends tomorrow. We rented a big slide and are having his party up at our church. I'm not exactly sure what I was thinking trying to organize a birthday party right after hosting Thanksgiving, but hopefully the small details I've forgotten will be overlooked once I see how happy Cale is when he lays his eyes on the slide. He's going to be in heaven! I can't believe my little three-pound baby boy is going to be four years old. When I open my eyes again he's going to be asking his dad for the keys to the car. Oy, oy, oy!

Tithing and Thanksgiving

2010-11-24T14:01:00.000-08:00

Tithing is a touchy subject among many people, especially Christians. We all have are own ideas on what's appropriate and we tend to justify all too often why we can't give financially. Some people think that the giving of their time is just as valuable as the giving of their money. I have my own ideas on tithing but that's not why I am writing a post on it. I also put the word "thanksgiving" in the title of this and I hope to convey the blessings Alex and I have received because of how we choose to tithe.

This first story many of my close family and friends have already heard and so I'll keep it short and simple. After Cale was born we quickly inquired many, many medical expenses. Fortunately my husband is a financial extraordinaire, therefore we had a good chunk of savings to help us pay those first bills that started coming in. Eventually, however, our savings was no longer enough. The bills kept coming faster than the paychecks and we were given our first major financial challenge: we needed to write our tithe check to our church but needed that money to pay off a hospital bill. Alex came to me and asked what we should do; do we write the tithe check and ignore the bill, or pay our bill and just forget about that month's tithe. Without really thinking I quickly told him we needed to tithe. Had I thought about it a little more my answer might have been different, but Alex took my opinion to heart and we went to church that Sunday and dropped our check into the offering plate. Less than a week later, we received a "love gift" from our church for $1,000. God is good!

My next story happened just last week. Alex had gotten a bonus at work several months ago. We decided to set a portion of it aside to tithe. Alex held on to the money for months and just last Monday decided to finally give it away. Meanwhile, we had decided to get Cale an iPad for his birthday. They have amazing applications for kids and also for people who cannot speak. Even though Alex has wanted one ever since the concept was even introduced, he decided to set aside his own selfish desires and let his son have one first. :) Like I said, we wrote our tithe check on Monday and on that following Wednesday, someone from our church who had heard about our desire to get Cale an iPad donated one to us!!! This person had one for their own personal use but saw that Cale had a greater need for it than they did and decided to generously give it to us. Wow. Both Alex and I cried when we heard what they were doing and we still can't get over the fact how thoughtful and selfless people can be. Again, God is good!

I share these examples because with Thanksgiving only a day away, I have been thinking about what I am most thankful for. My immediate answers are of course my family, my friends, my health, and the fact that we have a warm place to live and food in our refrigerator. But when I reflect on what God is doing in my life and how I can be thankful for those things, I first thought of how God has blessed us when we choose to obey. I sometimes get in a rut when all I can think about is the crappy stuff we have to deal with, but at the end of the day God has been there for us every second of every day, watching over us and providing for us around every corner. He never takes his eyes off of us for even a split second. He always has a plan and He always fulfills His promises.

Now that I have my own children and I am able to experience the love a parent has for them, I am always amazed that God loves me even more than I love my own kids. It's impossible to comprehend and I even become a little defensive when I think too hard about it. How on earth could anyone love me more than I love Cale and Riley? I thought I loved them better than anyone! I am so thankful that God loves me and cares enough to want to be involved in the smallest details of my life. I hope that for everyone reading this that you are able to experience God's love this Thanksgiving!

Dads

2010-11-15T11:04:00.000-08:00

Alex and I are doing a marriage bible study up at our church following a book called Staying Close by Barbara and Dennis Rainey. This is the first time in five years that Alex and I are both free during the Sunday School hour. In previous years we've either helped with the youth or had too little of kids. Now that both Cale and Riley are old enough to be in their own Sunday School class and Alex and I are taking a break from helping with the youth, we decided it would be fun to finally do a class together. I'd have to say that this particular class was perfect for us to get involved with because it's challenged us to talk through difficult things, especially during times when we really didn't want to talk to one another. Does anybody else fight with their spouse more than usual on Sunday mornings? I don't know what it is about this day that puts me on edge, but the task of getting out of the house on time pushes a button in my brain that must read, "Every little teeny tiny thing about your spouse will annoy you today." Not all Sundays are like this, of course, but a good portion of them turn out to be the most stressful day of the week. Being involved in this marriage study has really made me feel foolish for being such an old hag.

This week the book talked about the role that mothers and fathers play in their children's lives. The chapter about mothers made me feel incredibly inadequate and a complete failure as a mom, but maybe I'll talk about that another day. The chapter about fathers, however, really made me thankful and appreciative for Alex, but maybe even more so, for my own dad. I've known for quite a long time that I have an amazing dad, but somehow our group's discussion brought out a whole new respect I have for him. I'm so thankful that I've never had to doubt for one split second that I was loved by my dad. He was always involved in my life but the things I remember the best are him coaching my softball teams year after year and then his captivating interest in my golf game. He volunteered to take ten-year olds golfing on Tuesday mornings, which could not have been easy because I'm sure as a ten-year old I just duffed the ball around and didn't pay any attention to the rules. Painful to watch, I bet. When I turned old enough to get involved in tournaments, he was ALWAYS there. In high school my favorite memory was being told by my mom that he elbowed people out of the way to see my score on the scoreboard. He was shameless for me and words are not sufficient enough to tell you how loved that made me feel. When we would go hiking in the summers I remember him getting so mad at me and my sister for getting too close to white water rivers. Looking back, I now realize he got as mad as he did because he wanted to protect us. He always wanted the best for us, no matter what that looked like. He encouraged me in everything I did and praised me for all good things. He got us first and last day of school presents every year, even through college. He continues that tradition with Cale and I love it! Aside from loving me, though, I'm most thankful for how he loves my mom. They are coming up on their 28th wedding anniversary and now that I'm older I've realized that almost every security I had as a kid was due to the fact that my parents loved each other and stayed together. He's a hard worker and has made incredible gains at work, most of which I probably don't even know about, but no matter how important work was to him, he always made time for his family and that was evident throughout my entire childhood.

Dads are so important in a little girl's life and I can't wait for Riley to get a little older when she starts to realize how great of a dad she has. Alex is already talking about taking her out on dates and showing her that she's the most important girl in the whole world. I just know that Riley will feel the same way about Alex as I do about my dad. I'm so thankful that I married a man who can be that for Riley. On the way home from running errands the other night, Riley saw the moon up in the sky and told Alex that she wanted it. I could see the twinge of pain in his eyes when he had to tell her he couldn't. If it were possible, I'm sure he would spend the rest of his life trying to get her the moon.

I love you, Dad.

Update

2010-11-11T09:30:00.000-08:00

Cale had a follow-up doctor appointment yesterday and so I thought I'd update you on the current findings:

Nothing.

How very non-exciting. Alex and I haven't noticed any real changes in Cale since he started the steroids, except for the fact that he seems to be more uncomfortable and spitting up more. However, he gained seven ounces (!!!), so I suppose something good has come from this little experiment. His doctor wants to continue him on the steroids through this week because supposedly by Friday we will definitely know if they are either going to work or not work. We are scheduled for another appointment next Tuesday.

All in all, we're pretty frustrated that nothing is really changing but I suppose this is just another step in the elimination process. Other than being in obvious discomfort during and after eating, Cale has been in great spirits which we are incredibly thankful for.

In other news, we are taking Cale to his very first Griz game this coming Saturday! Alex and I went back and forth on what we wanted to get him for his birthday and when we finally just decided to ask him what he wanted, he said "football". My dad was a stud and hooked us up with three great tickets so we're leaving Riley behind and having a special outing with just the birthday boy! I'm so excited I feel like peeing my pants! He is going to have the time of his life! He loves watching football on TV so I can just imagine how he'll react when he gets to watch it in person.

I can't believe how quickly Thanksgiving is approaching! Alex's mom and step-dad are coming to visit from Seattle which means I am hosting my very first Thanksgiving dinner. My mom has set the standards high in my mind and so I feel a bit like Monica from "Friends"...in one episode she decides to compete with herself by trying to top her previous Thanksgiving dinner. I fully intend to spend the entire day in the kitchen, completely stressed and overwhelmed, while not accepting any help. Just the way I want it. :)

At this very moment I feel at peace, which is a 180 degree turn from how I felt last week. I hate seeing Cale in pain but I don't hate myself for not being able to fix it. Riley is a typical two-year old girl who throws tantrums over dropping her fork or a spaghetti noodle falling off her plate, but even those I have been able to deal with rather well. She clings on me 24/7 and rather than being annoyed I've discovered that I kind of like it. Neither of my children have napped this week, and being that it's now Thursday and I still have my wits, I consider that a phenomenal feat on my part. I can only attribute any of this to answered prayer and a god who loves unconditionally.

Of course this could all change by this afternoon but at least now I have a sense of humor on the whole situation.

Pure

2010-11-06T16:34:00.000-07:00

I've always wanted to be upfront and honest with my readers, and myself, when I created this blog. I wanted people to understand what my life was like having a disabled a child. I also created it to be an escape. Writing is somewhat of a drug to me; it clears my mind and gives me a sense of euphoria, however short lasting. No wonder English was my favorite subject in school.

I also understand that my raw honesty can be hard to read, and maybe even sometimes boring. I try really hard when I sit down at the computer to write about something funny that went on that day or something comical the kids have done, In being honest with myself, though, it's much easier to share the big, the bad, and the ugly.

This last week was beyond ugly. My poor husband let me go to bed around 7:00 in the evening and I slept soundlessly until 8:00 when my daughter hopped up on my bed demanding chocolate milk. That was my cue that the day was about to begin and if I was lucky enough, I might have the energy to wash my hair. I tried to put up a good front in front of my children and my friends but inside I was screaming, loudly, for an escape. Life had gotten too hard for me to handle.

To hopefully quickly summarize the events leading up to my horrible, no good, very bad week, my mind was being held prisoner to the stresses of Cale. I've had a hunch for quite some time that he's losing weight and I literally feel exhausted of all options in trying to get more calories in him. For a child who cannot eat, adding more calories to his diet is impossible. I was too scared to take him into the doctor for a weight check because I knew my fears would be confirmed and then they would most likely admit him into the hospital, just like they had before when he was about six months old. The option of admitting him into the hospital was not an option I was willing to consider. Finally on Thursday night I thought we had breakthrough! He drank an entire cup of his specialized extra-calorie formula, which is something he has never done before. Praise God! Knowing he had those extra calories in him lifted a giant weight off of my shoulders. Unfortunately, seconds after he swallowed his last gulp it ALL came back up. And not because he was sick but because of the stupid crap he has to deal with inside of his gut! I was so angry, so defeated, so helpless that all I could do was grab my bottle of Resolve Carpet Cleaner and weep. I scrubbed away at the carpet far longer than I needed to and just cursed God for making my son this way.

I went to bed not speaking to my husband because we all know we deal with these kinds of things very differently. I prefer to grieve in quiet while he wants to talk it out. Rather than lean on each other we end up creating more hostility within our home, which is never a good solution for anyone. We are slowly learning that we are not each other's enemy. This is a very hard lesson to learn.

Friday morning came. Riley jumped up on my bed, as per usual, demanding chocolate milk and as I sauntered down the stairs, I heard Cale stirring in his bed. I decided to bring him upstairs with us so that we could all snuggle in our bed and watch cartoons. I cherish those fifteen minutes so much because no one has to worry about if someone's finished their breakfast, gone potty in their panties, eaten a tube of toothpaste, gotten into the drawer of knives, etc.. It's just me and my kiddos enjoying being cuddled up in bed together, no matter how annoying the cartoon may be.

Our fifteen minutes were up, though, and it was time to get ready for the day. I fought with Cale for over an hour trying to get him to finish his breakfast, finally giving up because I knew that the more he ate the more likely he was to throw it all up. Knowing he needs those calories and knowing that he's not getting them twists my stomach into a million knots until I finally feel like I'm going to throw up. I hate feeling like I'm failing him as a mom. Lucky for us, and I saw this with the heaviest of sarcasm, the dietitian was coming to our house in the afternoon to check on how Cale was doing. She weighed him, did her little calculations and told us that he was underweight and his BMI level was a dangerous low. DUH. This is something you can tell just by looking at the kid. She gave her little spiel just like she gives every other normal child, making me feel like an idiot parent that doesn't know how to adequately feed her child.

The dietician finally left and I abruptly got on the phone with our pediatrician. I was at my wits end and I didn't know what to do anymore. She very nicely told us to come in right away and even though she had an afternoon of patients lined up, she spent over an hour listening to my concerns and then offering solutions. Hallelujah! Her plan is to start Cale on two different kinds of steroids over the weekend. I'm not exactly sure what the steroids will do but she gave Cale a diagnosis that is was too long of a word to repeat or even understand, so please just believe that the steroids are to treat that. If we don't see the improvements the doctor would like to see, she will most like want to put in a mickey button. A mickey button is a non-medical term for feeding tube. It will be hooked up through his belly button and when it's time to eat we'll just plug in a little tube and let the food flow.

I have an array of mixed emotions about this. I obviously don't want my son to have to eat through a feeding tube. It will be just one more thing that makes him different. But as my mother-in-law so eloquently put it this morning, "He is different". I also am not fond of having him go though another surgery. This poor kid has had more anesthesia than anyone should have in a lifetime, but perhaps this option is a blessing in disguise and we will see God's plan fold out before our eyes. Plus, the surgery would happen in LA and I could use a little sunshine in my life right now.

As for baby number three, things with Cale has made me realize that we have no time or energy for another baby. At least not yet. Do you ever feel like your dreams just keep getting squashed around every corner you look?

The other side of Me

2010-11-03T16:25:00.000-07:00

Yesterday was probably the hardest day I've encountered in a very long time. Without going into every detail explaining why it was so awful, the best way I can explain it is that I just wanted to lay in bed, hold my breath, and fly away.

I'm not talking about suicide. I would never, ever consider that option. It was more of a feeling of wanting to escape everything bad that is going on in my life, or more or less my perception of what is bad in my life.

It started out yesterday at the mall. My friend has asked me to meet to there to grab some coffee with another gal and let our kids play. As per usual, Cale doesn't really like to play. He prefers to dig through other people's purses, grab cell phones, untie strangers' shoe laces, etc.. My take on his behavior is that it takes one hundred times more effort to play than it takes other kids, therefore he chooses to just give up and do things he can do, such as dig through purses, untie shoes, and grab at cell phones. It literally breaks my heart to see that kind of defeat in him.

After we gave up playing on the train we all decided to venture over and get a pretzel. All of the other kids were eating one and so I gave Cale a little piece off of Riley's dipped in Ranch. As per usual, he fumbled with it in his fingers and Ranch poured from his mouth and down all over his face. One of his peers looked over at Cale and said, "Eeew, Cale's making a mess." Perhaps I was a bit more sensitive that day but that little comment made me cry. I hate seeing Cale getting made fun of, mostly because I know that this is just the beginning.

All the while I was with my friends the subject of baby showers and baby gifts fluttered through our conversation. I feel like I should be able to at least hear about babies and see pregnant bellies without turning into a sop, but for some reason my sadness keeps getting worse, not better. I really want to be genuinely happy for my friends, and I truly believe I am...in fact I'm sure of it...but the pain just doesn't seem to go away.

I'm already taking anti-depressants from which I started when I first had my miscarriage. I'm a little worried about myself, and so is my husband, because all I want to do is sleep. I can take a three-hour nap in the middle of the day and fall fast asleep again at bedtime. I'm always tired, always on the verge of crying, and never really having an appetite. I've had to choke down food just to make sure I get at least some nutrition in me. I've had little desire to work out; something that used to energize me and put me in the best of moods.

I have no idea what's going on but I want so badly to just return back to me. The happy, excited, goofy, Erica. I miss her.

Honesty with a side of baby, please.

2010-11-01T16:00:00.000-07:00

It's been five months since we lost Baby Burkhalter. Even though my twelve-week bean looked more like an amphibian than a human, I still give our baby a name because I loved it dearly. I would lay in bed at night, terrified about how my life would change adding a third child, but comforted by the fact that unlike my other two pregnancies, I was already deeply in love with the child growing inside of me. I would also lay in bed rubbing my ever-expanding belly (it's amazing how fast it grows with the third pregnancy) and made a vow to myself not to get so absorbed in how my body was changing. With both Cale and Riley I griped about gaining weight and was always so nervous to step on that evil weekly scale, but this time I promised to give my baby the best home possible, even if it meant gaining fifty pounds.

But then my baby left me.

This weekend Alex and I went shopping for some warmer clothes for the kids. It's frosty in the mornings and I feel like a terrible parent dropping Cale off at preschool without proper layers. Riley grows like a weed and I swear she needs new clothes every few weeks. After we put the kids to bed I decided to get all of their new clothes ready to be washed. I tore off the tags and started separating colors and for whatever reason I started to weep. Sob, really. Alex came into the room and was obviously startled by my quick change in mood. Between sobs I told him that all of these clothes were too big..."I wanted to be folding new baby clothes.".

I was beginning to think that time was making things easier. I assumed time was going to help me get over the baby I never really had. It's proving to be quite the opposite however. Little things that should be harmless can trigger something inside of me that instantly set me off.

I heard a friend of mine tell me that a January 1st delivery would be the absolute worst. January 1st was our baby's due date and even though she meant nothing hurtful behind her comment, it took everything in me not to crawl in a hole and hide.

On the other side of this coin is the agony of trying to decide if we should try to have another baby. My prayer since the day we found out we lost our baby was that if we were meant to try again that God would make that desire known in our hearts. Sometimes I am so confused that I don't know where my desire is. What if we make the wrong choice and we lose that baby, too? Or what if we make the choice to have another baby and it turns out that whatever is going on with Cale is genetic and we then have two children with disabilities. My fragile little heart would not survive that. I wish God were here to sit with me and tell me what He wants for our family, in LOUD, AUDIBLE, words.

The stress of family planning is going to make me older much faster than I'd like.

"Candy" is the magic word!

2010-10-21T09:34:00.000-07:00

Candy! Or as Riley would say, "tandy" since she pronounces her c's like t's. Cale doesn't live at our house but Tale does. :) Riley loves candy and it's worked as a bribery to get her to do almost anything. If we want her to finish the rest of her dinner, sit still while I do her hair, lay down to get her clothes on, etc., we just bribe her with candy. It works nearly every time and even though I know it won't work forever, I'm of the mindset that whatever works in the moment, DO IT. Please hold your judgments for later.

Backing up, we've been lightly trying to introduce the concept of going potty in the big girl potty for about six months. We've had a little potty in the bathroom for nearly a year, just to get Cale and Riley used to the idea before we actually started talking about it. Both Alex and I agreed that we wouldn't push the issue and that when they decided they were ready, that's when we would be ready to teach and guide them. As I started to see other kids that were Riley's age become interested in potty training, I would casually ask her if she wanted to try and go in the big girl potty. Each and every time her answer would be a definite "NO!". Alrighty then. After about six months of her refusing to even try, I began to think we would never rid our house of diapers.

A few days ago Riley was laying down on the floor before bed, getting her diaper changed and her pajamas on, and I nonchalantly asked her if she wanted to start going potty like a big girl. As per usual, she glared at me and said, "No!". "But Riley, if you go potty in the big girl potty I'll give you a piece of caaannnnndyyyyy.".

As soon as I said the word candy she jumped up, completely naked, and started running towards the bathroom. She sat down on her little potty and with just a little bit of coaxing she finally went to the bathroom for the very first time! Alex, Cale, and I were all there to cheer and clap for her, which she absolutely loved, and after she was finished she promptly demanded candy. Well, the only problem was that I was so used to her refusing to even try using the potty that I said I'd give her candy without thinking about the fact that we didn't have any candy...not even one tiny piece of chocolate anywhere in our house.

Whoops.

Thankfully, the promise of going to the candy store the next day was good enough and she continued to show interest in the potty even though her mom had lied about the rewards straight to her face. Being very brave (and probably very stupid) I put big girl panties on her the following morning to go to the candy store. She picked out several different kinds of jelly beans and although we still put her in diapers for bedtime, I've been putting her in big girl underwear and we really haven't had too many accidents and she's been very good about telling us when she has to go. We've truly lucked out with this kid and potty training isn't nearly the nightmare I had created it to be in my head.

That isn't the best part, though.

Since we've been spending a good portion of our days in the bathroom, Cale is usually present for most of our trips to the potty. He's been watching Riley, helping her flush, getting the toilet paper for her, and clapping for her when she's done. He seems to be very interested in the whole process and has even asked to sit on the little potty with Riley. :) With Cale's undefined motor delays we aren't entirely sure he can feel the sensation of having to go to the bathroom. We think he can but since he can't tell us we have no sure way of knowing. He has major constipation issues and so it's blatantly obvious when he has to go number two, so I'm assuming he can feel that sensation. Yesterday while he was squatting on the floor, in his diaper mind you, he shot up and headed toward the bathroom as fast as he could go. We followed him in and he was pointing to the potty. I undressed him and plopped him on the potty, not really expecting anything but mainly just humoring him. To my complete surprise he actually went! Riley was there and clapped for him and said, "Good job, Tale!". Cale was so proud of himself and thoroughly enjoyed the process of wiping and flushing. :) Even better, though, Cale walked out of the bathroom and signed the word candy. Well, as most of you know Cale isn't able to eat candy. He's never even tried it. Again, I decided to humor him and gave him one tiny jellybean. Once he put it in his mouth I could see he was a bit scared but he refused to panic and tried to chew it instead. About two or three minutes later he opened his mouth and signed all done!

Holy crap! Cale just told us he had to go the bathroom, he went, AND ate a piece of candy! Three firsts in the matter of five minutes!

I learned a few important lessons yesterday. One was that I should never, ever underestimate Cale's abilities. He is more aware of the things going on around him than I even am. He desires so much to be like everybody else and I'm learning more and more everyday that he is just like everybody else. I've said this before but even though he appears to be different on the outside, he truly is a typical toddler. There's nothing better in this world than watching him figure things out and surprising us with his newfound knowledge. This kid is going places.

Since yesterday Cale has eaten an entire piece of Hershey's miniature candy and two more jellybeans. As any normal child, he's discovered that candy is really good and I can already see that we've probably created a monster. At this point I am just so proud that he's able to participate in normal kid indulgences that I'll give him all the candy he wants. As my mom put it, there's always the option of dentures to fall back on. :)

So I have one child in the midst of potty training and another who is in the very beginning stages, which pretty much means I will be spending the majority of my days in the bathroom. The good news is that our bathrooms will be sparkling clean since there really isn't much else to do while they each spend about half an hour on the potty at a time.

They are their father's children.

Five years in the making...

2010-10-07T13:53:00.000-07:00

According to Alex's and my plans when we first got married, we should just now be starting to talk about having kids.

Funny.

This Friday Alex and I will celebrate our five-year wedding anniversary. I can still remember that day as if it were just yesterday. Cliche. But true. What a beautiful fall day it was to marry the man of my dreams!

Although I didn't see it then, I would definitely agree that the first year of marriage is the hardest. For me, it was extremely difficult to let go of the expectations I thought marriage would fulfill. It was saddening to learn that marriage wasn't all "little house on the prairie" kind of stuff. Marriage was, and is, hard. But oh so worth it! It's only gotten better since that first year, and thanks to the kind of man I married, I can't wait for the next fifty! :)

I knew I was marrying a great man when I said "I do" but I had no idea just how great of a man he would turn out to be. He loves me with all his soul and devotes his life to the Lord and to our kids. He's an amazing father, the kind that gets on the floor to play with them rather than watching them from his seat on the couch. He's committed to his family and you can see that in nearly every aspect of his daily life. Every action is for his family. He's forgiving, selfless, loyal, loving, hard-working, and those are just a FEW of his very best qualities. He truly is a one-of-a-kind gem and I'm so glad I was the one to find him.

So what do we have to show for the five years we've been married? Lots of arguments and make-ups, many tears but more laughs, two "holy crap there's two pink lines" moments, a small apartment with no air-conditioning, two wonderful houses, and 1,825 mornings of waking up to the best man in the world. It's gone by incredibly fast and even though we're not where in the place we had planned for when we first got married, it's the only place I want to be.

We are able to celebrate, thanks to my mom and sister who are driving from Billings to watch Cale and Riley, by taking off for a couple of nights to Quinn's Hot Springs. Neither of us have been there and don't really know anybody that has, which means Alex is totally jumping out of his comfort zone and being spontaneous. I have no idea what we're going to do but I'm so excited, for two reasons. One, two nights away from the kids is like a mini-vacation and two, the kids have been driving me insane the past couple of days which means this break could not have come at a better time. We can sleep in without being woke by a little girl demanding chocolate milk and Curious George. We can go to bed without making sure a little boy has his two little ropes, his monkey, and his favorite blanket. And we can lie down to go to sleep without listening to Riley cry about not having both of her nee-nees (favorite blankets), her big pig, her little pig, her elephant, her hammer, her microphone, her big blanket, her princess night-light, and her two other night-lights placed strategically across the room. Yes, she really does need all of that to go to sleep. Alex and I have indeed created a monster. Good luck to my mom and sister. :)

And yet, even though I'm so looking forward to getting away with my husband, I will no doubt be itching to return to our chaotic and stressful life. Five years and we've already created something wonderful and magical - OUR LIFE.

I love you, Alex. Thank for you for the five years you've given me with you. You're one amazing man and I'm so lucky to be married to you!

Trying my very best to be sensitive here

2010-10-04T12:51:00.000-07:00

Based on my experience with Cale, grief comes in waves. Some waves are small, easy to deal with, just barely getting your toes wet. Other waves can be huge, enveloping your whole body and churning you underneath the water until you feel like you can't hold your breath for one more second. And other waves are simply waves; they roll in, get you wet, and then roll back out again.

I never thought losing a baby to miscarriage would be anything like that. I just assumed it would be one of those huge waves that takes you under water until you feel like you can't hold your breath for one more second, and then it would release you into the fresh, oxygenated air. This weekend, though, I realized that even this type of grief can show up at any time, in any form, completely unannounced.

On Saturday my friend had a baby shower for her new baby boy that is to arrive at the end of October. I've known about the shower for quite some time and have had multiple discussions with my husband, and even my therapist about whether or not I should go. They both agreed that it would be healthy for me to go, and maybe even easy. The whole night before the shower and then the morning of, I had a huge pit of anxiety rolling around in my stomach. I was irritable and snappy towards my husband and kids and I couldn't really pinpoint an exact good reason. I just wanted to go to the shower and get it over with.

The shower itself was fine. My best friend who hosted it did a wonderful job and everything was beautifully set up. The mother-to-be looked glowing and everyone was excited to finally celebrate this baby boy she has been carrying for nine months. Naturally, I am a very compassionate, empathetic, and cheerful person but I know none of those qualities exuded themselves that day. For reasons I can't even explain, I started tearing up while the mom began opening up her gifts. Seeing the tiny clothes and fun teething toys just hit me and no matter how hard I tried to stop them, the tears started welling in my eyes.

"I hate this, Erica. Stop it! You're here to support your friend, not be the downer of the party." I truly was embarrassed by my emotions and after I realized that I wasn't going to be able to fake my way through the rest of the shower, I quietly made my exit.

As soon as I got home I decided to go for a run because exercise generally makes me happy. And it did, for a brief moment.

Sunday must have been the compilation of everything that had gone on the day before. I was exhausted; not just tired, but completely and utterly lacking of any reserve of energy. I cried multiple times throughout the day and never could quite fully explain to my husband what was going on. How can you explain something to someone when you yourself don't even understand it? I hate the person I was yesterday and to be honest, I just want the sadness to go away so I can go on being the Erica I am proud of. I don't want to have to go to bed at 7:00 just to escape the sadness.

I just want my life back, as if that baby never started to grow inside of me in the first place...as if I never had the chance to start loving it before it was taken from us.

If at first you don't succeed...

2010-09-27T08:41:00.000-07:00

As many of you know, my little Cale is non-verbal. He can say a few words but they are probably only recognizable to Alex or me. He uses sign language to communicate, but again, his signs are only recognizable to a very small group of people. When I think about this and the fact that he is almost four years old, I have a hard time wrapping my mind around the fact that he is generally an incredibly happy boy that is easy to please. If I could only communicate with a few people and regardless of how hard or how long I tried to get people to understand me, and they just couldn't, I would probably become a bitter, sad, lonely woman. Not my Cale, though. He just keeps persevering and constantly has the mindset of "if at first you don't succeed, try, try again".

My mind has really been focusing on his communication lately. Cale has been making some incredible gains in his speech, which is probably why I'm so infatuated by it. He is starting to form sentences with his signs and becoming outrageously creative in trying to get us to understand his specific wants and feelings. For example, he is obsessed with technology and his most recent love is a green iPod Nano that Alex and I no longer use. We gave it to Cale to play with and ever since then he has become attached to the silly thing. He asks to sleep with it, hold it in the car, etc.. He used to use the sign for "phone" when he wanted it but since he also likes to play with our cell phones, he realized that he wasn't being specific enough to get what he wanted when he wanted it! Therefore he came up with another way of asking. During speech therapy, his teacher uses an activity with turtles to practice his vowel sounds. With the vowel "I", there is a picture of a turtle stretching one arm straight up into the air and the goal is for Cale to mimic the turtle and say "IIIIIIIIIII" for as long as he can. It's a silly game but it works. Anyway, we have been practicing his vowel sounds for months and months and months because there are still a few he cannot say. Well, we recently started noticing him sticking one arm in the air and randomly saying, "IIIIIII". It took me a few tries to figure out what he was saying but once he paired the arm in the air with the sign for "green", I immediately knew he was asking me for the green iPod. Another example, when we were driving to Alex's parents' house last weekend Cale kept giving us the sign for "home". He is usually very excited to go to Grandma and Grandpa's and so we were puzzled with why he would want to stay home. After a few tries of trying to communicate with him, he finally pointed out the car window and we realized that we had just passed Home Depot. Still puzzled, we asked him, "Do you want to go to Home Depot?". An instant smile flashed across his face and he signed, "yes".

This may seem small to most of you, especially for those of you with children that can just tell you exactly what they want when they want it, but for Alex and me it has made a huge difference in how we are able to communicate with him. He needs less prompting and I'm starting to realize more and more how very normal he truly is. He acts, and even thinks, like a typical three year-old. Just the other day he got mad at me for telling him that he needed to wait for something and so he marched down the hall, into his bedroom and "slammed" the door; typical toddler behavior and let me tell you, I couldn't have been more proud. :)

Even though Cale is very different from his peers, I'm starting to feel like life is normalizing for us. I was trying to explain this to Alex last Sunday after coming home from church and I'm not sure I can best summarize my feelings in words, but I'll give it a shot. I used to get embarrassed when people realized that Cale was different. "Embarrassed" isn't the right word because I'm not embarrassed by Cale, but maybe anxious is a better term to use. I was anxious because I never wanted people to judge him, and by taking him to restaurants, out to the mall, or to church, he would become a prime subject for judgment. In my heart I knew that people would love him if they just gave him a chance, but unfortunately for most people with disabilities, they are never given that first chance. I'm sure any parent would not want other people to think anything less of their child than the overflowing pride you have for them, and I certainly am no different.

I just want people to love Cale as much as I do and to realize that he truly is more normal than he is different.

First Day of School

2010-09-11T15:15:00.000-07:00

Last Wednesday was Cale's first day of his second year in preschool! Cale has literally been asking to go back to school since the last day of school this past spring. On the rare occasion that I would have both kids and myself ready to walk out the door before nine o'clock in the morning on any given day, Cale would automatically assume we were headed to school, because we ALL know that without an incredibly good reason to be showered, dressed, fed, and still sane, there was no possible way to be so prudent. We would head to the car and Cale would clap his hands together twice, therefore asking me if we were going to school. Sorry, Dude. You have three long months stuck with ME. How awful.

The night before his first day we laid out his clothes that he was to wear in the morning and packed his backpack with everything a preschooler needs: a change of clothes, diapers, wipes, and a snack. I'm pretty sure Cale would have slept in his clothes with his backpack strapped to his back if we would've let him. He woke up bright-eyed and ready to go! Alex and I took an unnecessary amount of pictures at the house and I proceeded to embarrass him even further by making him stand in front of his school while I snapped even more. I thought for sure I would shed at least a little tear but after I took him to his classroom and saw that he was too excited to even wave good-bye to me, I couldn't help but be anything but just as excited for him. I drove away a very proud momma!

This school year is a little different from last year. For one, he goes three days a week as opposed to just two. Second, I'm letting him ride the bus. I feel a little embarrassed and a little guilty by the latter change. I'm embarrassed because I'm a stay-at-home mom and I feel it's my JOB to take my kids to and from school. I can't help but wonder if his teachers think I'm lazy because I won't even drop off my own kid - I'm making someone else do it for me. I feel guilty because Cale wants to take the bus, and my selfish need as a mother to be in control of every aspect of his life is already rearing its ugly head. Watching the bus drive away from our house is like having everything thrown into the wind. How am I ever going to survive his teenage years???

Other than those changes, everything is pretty much the same. He has the same teacher and the same classroom. On his first day all of the teachers and therapists were outside greeting the kids, and when they saw Cale everyone seemed to light up! I'd like to think they were more excited to see him than any other student, but that's probably just me. :)

While Cale is at school I try and do something fun with Riley. I thoroughly enjoy my alone time with her and this year I'm treasuring it even more as I realize how fast time is flying by. If we decide to put Riley in preschool she will start next school year. AAAHHH! I've heard a million times from older and more experienced parents, "Enjoy these days because you'll never get them back."

As cliche and redundant as that statement sounds, it is so true and makes me a little sad. If I survive the toddler years I'm sure I'll look back at these days with nothing but happy memories.

It's the little things that make us smile!

2010-09-02T10:31:00.000-07:00

I can hardly believe summer is coming to an end. Missoula had a handful days of sweltering heat but other than that I can't really remember feeling like it was actually summer. We spent a few weekends at the lake, went to Denver for a week, but other than that it was a pretty quiet, and very short, three months. Last summer was full of buzz and busyness which made this year seem a bit dull. We are planning a last-minute trip to Billings this Friday for the Labor Day weekend but I think that will be the end of any spontaneity before winter traps us in our homes for the next six months. <sigh>

Alex has been EXTREMELY busy at work the last few months which has probably contributed to our quiet summer. He finally closed a deal last week which has him breathing a huge sigh of relief. He has an extraordinary work ethic and as much as I'd like to complain about him working so much and not being as available to our family as he usually is, I'm grateful he's willing to work so hard to provide for us. I definitely got lucky when he chose me to spend his life with.

Cale and Riley continue to be loads of work and some days I've considering trading them in for new ones, but at the end of each day when they finally fall asleep and look seemingly innocent on all accounts, I remember how lucky I am to have these two wonderful kids.

Riley is a constant stream of entertainment, always making me laugh and marvel at how fast she is growing up. She's talking in full sentences and developing her own personality. She's reached the independent I-can-do-it-myself stage. She refuses help even when she clearly needs it, which usually results in lots of tears and frustration...taking after her mother, I'm afraid. She asks what seems like hundreds of questions within a matter of twenty minutes, usually while we're in the car, and when I catch myself becoming irritated after hearing the same question over and over again, I remind myself that it's a blessing she can process her thoughts and voice them into questions. I do find myself taking her normalcy for granted from time to time, which is both disappointing and sad, because I told myself I would never do that. It's heartbreaking to realize that I sometimes forget what a giant miracle she is.

Cale continues to be my Little Engine That Could. He amazes me almost every day with his never-ending supply of determination and patience. He's walking better, which is one thing I can confidently say I have NOT taken for granted, and his sense of balance seems to be improving as well. He still falls from time to time but he's better at catching himself and staying upright when his sister crashes into him. He's able to walk up and down the stairs holding onto the rail while someone holds his other hand, which is honestly something I never thought I would see. I'm hopeful that he will one day be able to go up and down all on his own! He's also been able to crawl/walk up the stairs at the playground to go down the slide, all by himself! He's mastered "scooting" which has allowed him to do the whole process of going down the slide completely on his own, which I must admit has lifted much anxiety about going to the park. Last summer I can remember dreading going there because it was so depressing to watch a child not be able to play on toys that were created for him, but this summer that all changed. I enjoyed going to the park and watching Cale overcome his fears and conquering obstacles. On a more impressive note, after nearly three years of hard work, he is finally allowing solid food in his mouth!!! He's never been a fan of pureed textures and usually pushes them out with his tongue. He's always had his eye on whatever we are eating: steak, bread, corn on-the-cob...you know, the easy stuff. (yeah right!) About a month ago we were at the dinner table eating tacos. After we were all finished and just sitting around the table talking, Cale leaned over and grabbed a black bean off my plate. He fumbled with it in his hands while trying to get it into his mouth. This wasn't unusual because we always give him things off our plate to suck on and taste. I asked him if he wanted me to help him and by some miracle he let me put the little black bean in his mouth! Once in his mouth, rather than freaking out and immediately pushing it out with his tongue, he kept his mouth closed and started making a chewing motion! Now this was indeed a miracle! He had never done this in his nearly four years of living! He calmly moved the little bean around in his mouth and after a few minutes I watched him swallow it! Alex and I were practically doing backflips in the kitchen, clapping and praising Cale with everything we had. He continued to eat SIX more little black beans before he finally decided he was full. :) He was so proud of himself, probably because Alex and I were acting as if he had just won an Olympic event, but the smile and sense of satisfaction on his face was priceless and probably a moment I will never forget. After the little black bean, he has since allowed more things into his mouth. He's since tried watermelon, pancakes, baked beans, cake, and a few other things. He is still very far from being at a point where he could eat enough to actually gain nutrition from it, but we are incredibly encouraged and hopeful that his days on a liquid diet may soon be over. Aside from advances in his eating, he is also getting more efficient with his communication. He learns signs as fast as I can say them and probably has a vocabulary of more than 100 different signs. His vocal communication is getting better, too. He can now SAY the words dada, papa, purple, hi, ball, football, and bye-bye. These words are relatively easy for Alex and I to understand but are probably harder for other people to decipher. Either way, we are also very encouraged and hopeful by these gains. He shows an incredible amount of patience and grace towards us when we have a difficult time understanding what he's trying to say. He rarely shows any signs of frustration and instead continues to try different ways to get his point across. He probably thinks his parents are a couple of dummies. :) It's really neat because since Riley knows every sign Cale knows, she is sometimes able to vocally tell us what Cale wants. We will be driving near the mall and Cale will do the sign for "train", meaning that he wants to go play on the train in the mall, and pretty soon Riley will say, "Mama, Cale wants to go to the choo-choo!". It's a huge blessing that Cale and Riley are able to communicate with each other!

There are so many other things I could write about now, including the several doctor appointments Cale has been to this summer, but I think I've shared enough for now. :) All in all, we seem to be doing well the past several weeks. My spirits are lifted and I feel pretty positive and hopeful about life. Cale starts preschool next Wednesday and so I'm sure I'll be sharing about that soon!

This is so hard for me to admit...

2010-08-25T15:58:00.000-07:00

...but I have officially become a "Twilight Junky".

This is hard for me to admit because for years, ever since the first book was released, I scoffed at all the people who had become lovers of vampires. I never read fiction books, only non-fiction, and so I didn't dare try and see what all the fuss was about. I was flabbergasted by the "Team Edward" and "Team Jacob" shirts that girls all across the country started wearing. How stupid, I thought. I was especially skeptical of my sister because, for any of you reading this that know her, she can read the same book twenty times and never get bored. She was a Twilight junky, always buying the books on their release date and seeing the movies on opening night. I thought to myself, "isn't she a little old to be so engrossed in this enormous teeny bopper fad?" I'm not sure how many times she's read the books but I'm guessing she's read through all four more than once . What a waste of time, I thought.

It wasn't until a few months ago, while the third movie was still in theaters, that my mom told me I should watch the movies. Pfff, yeah right! I have zero interest in vampires. She countered me by telling me that the movies were more romance than anything else. Okay, she had perked my interest a little. I'm not one to resist a good love story. So it was on a Friday night that Alex and I drove around to every movie store in Missoula looking for the first Twilight movie. With the invention of Redbox I'm surprised movie stores even exist. We had zero luck and I was genuinely disappointed.

"Why on earth was I so set on watching this stupid movie?"

Thank goodness I married a problem-solver because once we got home and Alex realized I wasn't going to give up pouting, he bought the movie on iTunes so that we could watch it after the kids went to bed.

I was surprised at how fast I became enthralled with it and the characters. "Okay, so this is what all the fuss is about!"

We finished the first movie around 11:00 and I knew that I wouldn't be able to sleep until I saw the second one. Alex rented that movie on iTunes, not bothering to buy it, too. We finished the second one and as if I didn't already know this after watching the first one, I was hooked. I needed to see the third movie in theaters or I wouldn't be able to go on. Dramatic, I know.

Our next available date night was spent watching Eclipse. I felt like a total loser sitting in the movie theater but I didn't care. I didn't care that I had become such a hypocrite.

I just finished the first book last night and have started in on the second one. I have stayed up far past my bedtime, which is usually right after the kids go to bed around 9:30, and Alex has caught me with my light on well past one o'clock in the morning, my eyes glued to the pages of these silly books. It's still a little hard for me to believe.

You can bet that once the fourth movie is released in theaters, I will be there on opening night wearing my "Team Edward" tee-shirt, unashamed and totally excited.

My heart

2010-08-14T15:50:00.000-07:00

Yesterday I found the ultrasound picture of our third child stuck to the bottom of our big blue garbage can. I opened the lid to throw away one of Riley's toxic diapers and that familiar photo of black and white caught my eye. In shock, I just stared at it for a few seconds. Knowing that if I looked at it any longer, or worse, dared to retrieve it from the bottom of the garbage can, I would have burst into tears and scared my in-laws who are currently visiting us from Washington. Even now, sitting here typing this, I'm sad to know that the only picture we have of our lost baby is stuck on the bottom of a nasty, smelly, big blue garbage can.

I don't know how or why that ultrasound picture made it into the garbage. Perhaps it's because I have enough to fill an entire scrapbook that I thought I would wait to keep the ones that actually showed somewhat of a resemblance of a baby. Those first glimpses of babies just look like itty-bitty blobs. Precious blobs, but blobs all the same.

Today was the first time I've cried about the miscarriage in probably a couple of months. So I give myself a B+ in terms of how I'm doing. I would have never guessed how painful and emotional a miscarriage is on a person. To be honest, I think my ability to cope has a lot to do with the antidepressants I am taking. Antidepressants are a slippery slope for me. I took them for a very short time after Cale was born and was still in the hospital. I went off of them quickly thinking I could handle things on my own. Thankfully, with only a few slip-ups here and there, I was able to get along without them just fine. This time, however, I NEED the help. Without help I was choosing very poor ways to cope, and really those ways only made things worse and not better. With my husband's urging, I decided to talk to my OB/GYN about the things I was feeling and he suggested I go on a mild antidepressant. After about a month I decided I was all better and stopped taking them. Not a good idea. I again slipped back into deep sadness and tried to find ways to cope on my own. Those ways did not help, and again, just made things worse. With my husband's pleading I went back on the drugs and seem to be doing pretty well presently.

I think one of the hardest things I face on a daily basis is watching my best friend grow her baby in her belly. I was so excited when I found out she was pregnant and even more excited to find out that I was due only a week after her. We have been pregnant with both of kids together and I just knew this third time around would be something special we could share with each other. I see her growing and see her getting to find out the gender of her baby, and although I am genuinely excited for her, it's just a huge reminder of what I'm not able to experience because of the loss of our baby. Last week we could have found out if we were having a boy or a girl.

I guess I always thought having a miscarriage was something that happened, was over, and then people moved on. I never would have guessed I would be thinking about dates and wondering when I should have felt the baby move for the first time, or when they could open and close their eyes. I miss my baby and still struggle with trying to make sense of why he or she was taken from us. I know God's plans are perfect and that He does not make mistakes, but even the comfort of that knowledge sometimes can't take the pain away.

Helllooo out there!

2010-08-13T15:26:00.000-07:00

Wowzer! It has been an incredibly long time since I've posted anything and for that I must apologize. Summers are always crazy and this one is no exception. I've had plenty on my mind and plenty that I could have written about, but to be honest every time I sat down at the computer I just could not find the right words. So today I decided to say "screw it" and even if my thoughts come out as one big jumbled mess that do not make any sense, so be it!

We have had a pretty eventful summer so far, if you can even call it that. Missoula has been very mild with only a handful of days when the A/C was absolutely necessary. The old-timer farmers are predicting this is the last week of summer for Montana, which makes me want to go into a downward spiral of depression. I am not ready to be housebound for the next nine months.

On the upside, we have got to enjoy a few trips to the local water park. Cale has mastered going down the kiddy slide all by himself which makes Alex and I smile from ear to ear. Riley, of course, does anything and everything on her own -- with or without our permission. She is one independent child with no sense of fear. She climbs up anything, jumps from any height, runs in any direction, and slides down anything worthy of being called a slide. She makes me incredibly nervous but at the same time I'm so very thankful she has the ability to be so daring. Cale's trials remind us not to take anything for granted -- even the ability to suck through a straw or eat a popsicle on a hot summer day. Riley amazes me more and more each day.

Aside from the water park, we just got back from a long weekend up in Big Fork, MT. My parents rented a condo in the heart of downtown and so we met them up there to enjoy a few days playing in the water and checking out the local Arts Festival. We rented a boat one of the days and even though the weather was less than ideal, all four of us (myself, Alex, my mom and my dad) got to enjoy some knee boarding and water skiing. Cale had literally been asking for a "boat" two weeks before we left and so his weekend was MADE by being allowed to ride in the boat. Riley, on the other hand, took naps in the boat. She was obviously not as thrilled about the whole thing. The most enjoyable thing I got to do during the four days we were there was play golf with my dad at Eagle Bend, just the two of us. I had so much fun and I just wish we were able to do that more often. We laughed a lot and just got to enjoy an activity that we used to do so often together. It was a perfect day.

Alex's mom and step-dad are at house right now visiting from Seattle. Cale and Riley have been spoiled beyond belief with having been with grandparents back-to-back. Next week will be interesting, for sure. They leave on Sunday and I think we are heading to Flathead Lake tomorrow to play in the boat some more. I know that's what Cale's vote is. :)

So there's a very brief update on what we've been up to the past couple of months. I really want to write about Cale and some of the progress he's made so hopefully I won't wait too long before sharing.

I hope everyone is having a terrific summer and that you are able to enjoy however long is left of it! :)

ALL day and ALL night DATE!!!

2010-07-02T11:31:00.000-07:00

Thanks to my incredible and selfless in-laws, they offered to take my two kiddos all day today and let them stay overnight. Aside from vacations, I have never had a WHOLE day to myself. I have no idea what I'm going to do but I am just so excited about the many options looming out there! I may spend all day cleaning my house...or, maybe not. I may just go to as many stores as I possibly can without having to worry about two kids screaming, throwing tantrums, dropping unnecessary items into the cart, and oh yeah...pretty much needing to speed shop which completely eliminates the option of browsing. I could browse today!!!! Oh, the possibilities....

I'm so excited and happy right now I may just pee on myself.

I will let you know what my day consisted of at a later time.

Summer is officially here!

2010-06-15T16:23:00.000-07:00

For as many summers as I've lived in Missoula I'm been involved with what used to be called VBS, Vacation Bible School. Our church puts it on every year and it has since been renamed SAW, Summer Adventure Week. I haven't been able to get in the habit of calling it SAW because to me that just doesn't sound right. VBS it is, I'm afraid.

This week is Vacation Bible School up at Missoula Alliance Church. Hundreds and hundreds of kids pack into the sanctuary everyday, eager and ready to expend all of the energy they kept bottled up during the school year. These kids are CRAZY! It's exciting to see and frankly I can't blame them because even now, as a twenty-six year old, I get a little giddy during the first few days of June as I remember how it felt to be a kid to have the whole summer free to do anything and everything except school. Ahhh, to be a kid again. As per usual, I am helping out this year which means my life this week is also complete madness. The feat of getting my kids properly dressed, fed, diapered, and out the door before 8:20 in the morning is ginormous in and of itself. And that's just the easy part.

My "job" this year is Event Coordinator. This is my second year doing it and I still don't quite know what all it entails. I help plan games for the kids to play with the goal being to help each child memorize a certain bible verse. I help set up drama sets and shuffle kids where they need to be. All in all it's a pretty simple job. Even though I'm kind of tethered to one spot the entire week, the perk to that is I get to see ALL the kids at one time or another. In previous years I've been a Guide and I personally think being a Guide is the best job of all. My husband is always a Guide. Guides "supervise" a predetermined group of children for the whole week, which means they basically get to be a kid themselves and get to participate in everything that the kids do. Lucky.

This year, though, I was also asked to be a speaker who shares the gospel with these kids each and every day. At first glance I thought it would be fun. I enjoy speaking in front of people and having a job that would challenge me was really exciting to me. "Bring it on," I thought. More days passed and I began to remember the people who did the same job last year and the year before and the year before. I began to panic knowing that whatever I said had the power to make a child deny the love of Jesus. What if I said something wrong and this child was forever convinced that there was no God? My words were the difference between Heaven and Hell. (Poof!) That was my dream cloud breaking over my head. I was being a bit dramatic and it took me awhile, and the words from my husband, to remind me that, yes, my words were important but it was ultimately the Holy Spirit that would bring a child to Christ. God is more powerful than a word or any sentence that could ever come out of my mouth. So, I calmed down and slowly started to prepare some ideas for my talk.

But then June 11th happened. The Friday before the start of VBS. I was in no mood to proclaim the love of Jesus to anyone, not even to myself. I didn't feel the love of Jesus and to be honest I was really angry with God. One reason I don't mind speaking in front of people is because I'm usually passionate about whatever I'm speaking about, but I knew that if I were to get up in front of those kids on Monday morning, it would be blatantly obvious that this God I was supposed to be talking about wasn't as grand as everyone made Him out to be. I called the director of VBS, who thankfully lives right across the street from us and who is a very good friend to our family, and I told her the thoughts running through my head. She understood completely and I could tell she could feel my pain. She cried with me and urged me to do whatever I needed. I left her house that morning almost certain I wouldn't be speaking to those kids come Monday morning.

Yesterday was Monday and by a power not from myself, I got up in front of those kids and told them about the love of Jesus. I'm not exactly sure what happened but it just felt like the right thing to do. I walked into the church that morning with tears bottled up in my eyes. I was sad. Sad because I never got to see my baby's face or kiss their tiny toes, but also sad because for a second I had doubted Jesus' love for me. I'm not sure if anything I've said over the past couple of days will stick with any of the kids but I know the Holy Spirit will do the job even if I can't.

What could have been...

2010-06-13T15:06:00.000-07:00

What could have been a post that I had been waiting months to write about sadly turned into one of my worst nightmares this last Friday.

You see, Alex and I were excitedly expecting our third baby! We had been keeping it a secret from most people, aside from our family and two of our closest friends. We had tried for a baby for about six months and then decided that maybe we just shouldn't try anymore. So, I went on birth control but with Alex and I birth control is more like birth guaranteed! I got pregnant with both Cale and Riley while I was on the pill. Go figure. So the first month on birth control we found out we were pregnant! I remember waking up from a very vivid dream that I was pregnant (which is the exact way I knew I was pregnant with Cale and Riley - from a dream) and so while Alex was taking a shower I rushed downstairs to use the bathroom and take a test. Low and behold I slowly started to see TWO pink lines appear, which meant I was definitely pregnant. My first emotion was fright. I started crying immediately and just like I had done the previous two times, I started shaking and could barely speak. I ran upstairs and told Alex to get out of the shower. He initial reaction was that one of our kids must have died because of the look on my face, but when I was finally able to stutter out the words, "I'm pregnant", he got a huge smile on his face, hugged me, and told me that everything was going to be okay. His reaction and his assurance slowly made me feel okay, too.

From that very moment I started praying for this baby. I started praying that it would be healthy and that God would help me reach a full-term pregnancy. I prayed that my pregnancy would be healthy and that we wouldn't encounter any complications. I prayed that I would be able to slow down and enjoy this pregnancy, because I was able to do that with Riley and I loved every moment of being pregnant with her. I prayed for a safe delivery and that it would be a perfect, intimate moment for our family. I prayed for Cale and Riley and that they would just embrace this new life with everything they had. I prayed all these things EACH and EVERY day from the moment I found out I had someone growing inside of me. I didn't miss one day.

Alex and I had already chosen names, depending on if we were to have a boy or a girl. We fell in love with the name Brady if it was a girl, and we decided on the name Tye if it was a boy. I loved those names. I was taken aback at how much I already loved this little person growing inside of me. Perhaps it's because I already have two kids and I see how much I love them, but I had just as much love for this little person that I hadn't even met yet as I do for my two kids who are already here with me. Even though I was only three months pregnant, I truly felt like I had bonded with this baby even though I wasn't able to feel him or her move inside of me. I saw their tiny little heartbeat on the ultrasound during my first appointment and even then I cried just knowing how much that little baby was already loved.

Friday, two days ago, I woke up and knew something wasn't right. I called my doctor and told him what was going on and he assured me everything was probably okay but to come in anyway so that he could put my mind at ease. I called Alex home from work so that he could watch the kids while I went to the doctor. I guess in my mind I thought things would be okay, too, because the same thing had happened when I was pregnant with Cale.

When I got there my doctor sat me down and assured me everything was fine. He went over a few causes as to why these things might be happening and then told me he'd do an ultrasound so that I could see everything was fine. He got our baby in the center of the computer screen and I knew immediately something was very wrong. I had seen enough ultrasounds to be able to detect the heart beating and in the picture I was looking at, there was nothing. No movement from the baby, no beating heart. My doctor, clearly shocked, poked around for nearly ten minutes trying to find the heartbeat but finally said, "I think you've probably already miscarried."

He left the room to allow me to get dressed and as soon as he closed the door I just broke down into hard sobs. I wanted Alex to be there; someone to be able to hug me and tell me it was okay. But I was just all alone, left there to stare at the image on the ultrasound machine of our little baby that had died.

I was nearly twelve weeks pregnant. Our baby was about the size of a lime. My doctor gave me two options. 1) Go home and just wait for the "tissue" to pass or 2) have a procedure done, called a D and C, to basically "suck" out the tissue using a machine. Well, neither of those options sounded very pleasant to me. I certainly didn't want to just sit and wait for this nightmare to finally come true. Even though I knew our baby was already dead, there was still a peace inside of me knowing that it was still a part of me. I didn't want to just see it in the bottom of the toilet. I also didn't like the second option but I guess I didn't like it the least because that is the option I chose. That afternoon we checked into the hospital and within about four hours I was able to leave, without my baby.

I'm still in a bit of shock. I know miscarriages are fairly common but "common" does not mean it is easy. I'm saddened beyond belief. I cry at random times throughout the day. I even get really angry at times. I literally feel like I have lost one of my children, even though I was never able to see or meet them.

Life feels so different now regardless of the fact that nothing has really changed. There's just a sadness hanging over our home. One thing, though, does bring me great joy. I believe 100%, with all of my heart, that our little baby is celebrating with Jesus in Heaven. When I walked into our house after coming home from the doctor and learning that we had lost our baby, I buried my head into Alex's shoulders and the first thing he said could not have been more perfect. He said, "Well, it was the first little Burkhalter to see Jesus' face."

Brady or Tye. God knows who you are, and I can't wait to meet you on the other side!

Seattle Trip

2010-06-09T14:44:00.000-07:00

Last Thursday we packed up and headed towards Seattle. This was the first time I was excited to make the drive, only because I was so certain that this doctor's appointment was going to give us the answer we had been waiting for. Our plan was to only go as far as Moses Lake, WA since the drive to Seattle is nearly nine hours if you factor in our two kiddos and the many stops they require. Our night in Moses Lake was uneventful; the kids slept great due to my husband's grand idea of using the extra mattress to the queen bed as a "wall" to separate us from the kids. They slept all night and we woke up and hit the road on Friday morning.

We rolled into rainy Seattle around 1:00 and headed to the hospital for a pre-op appointment with the anesthesiologist. They checked his height, weight, and reminded us of what time we needed to be there on Monday morning. Seriously? That's it? We came all the way here three days early to get his height and weight? Apparently the staff at Seattle Children's do not care if you are coming in from out of town - they don't mind whose time they waste. Thankfully, though, Grandma lives in Seattle and so we got to spend a few days with her. Cale and Riley were spoiled beyond belief and were still asking for Grandma when we pulled into our driveway last night. What would the world be like without grandmas?

Monday morning was the big day. We woke up at 5:00am to hopefully beat the rush-hour traffic so that we could be at the hospital by 7:30. We made it with only a few minutes to spare and pretty soon there were doctors rushing all around, prepping Cale for his procedure. Alex and I were both pretty calm but definitely anxious for the results. They only allowed one parent to go back with Cale while they put him to sleep and my dear husband knew I would be a wreck if I was the one who had to wait alone, so he graciously allowed me to go back with him. Cale screamed and clung to my arm while I lied him down on the bed, obviously terrified beyond belief. I couldn't hold back the tears any longer and sobbed right in front of him, trying to assure him everything was going to be okay. I'm sure he saw the fear in my face. I tried to be strong but I don't think any parent could have watched their child cry that hard, visibly frightened, and not shed a tear. Cale fought and fought while the nurse tried to keep the mask around his face but after a few minutes he slowly started to give up and then fell fast asleep. Now the waiting begins.

Alex and I walked up to the cafeteria to grab a bite of breakfast. Neither of us were that hungry but decided to eat anyway. We sat at a table but didn't really say anything to each other. I think we were both a little scared and anxious. Even though Cale wasn't having surgery, it never feels "okay" to have your child be put to sleep for something. I can't imagine the parents who have to sit and wait while their child endures a six-hour surgery. Agony. After eating, we walked down the hallway and headed towards the waiting area. A family sat down near us and we noticed that the father had a Griz sweatshirt on and so we made small talk with him for a little bit. It's funny how small of a world we live in. After waiting for only about half an hour, the doctor came out and sat down to go over everything with us. I took a deep breath and for some reason, seeing the look on his face, I knew he wasn't going to give us the answer we were hoping for.

He showed us a few pictures that he had taken and told us that everything he could see looked "normal". That word, 'normal', makes me want to cry. Everything is not normal and the more I hear it the more angry I get. He told us that he took some biopsies and that it would take a couple of weeks to get those results. The biopsies would tell us if he had any allergies or if there was more inflammation in his esophagus than he could see through the scope. I'm hoping the biopsies are able to tell us more but at this point I've pretty much lost all hope.

The good news, though, is that they didn't find anything. The other side of this coin is that the doctor could have seen something that needed fixed with surgery. I'm learning that rather than trying to find out what is wrong with Cale, this whole process of doctors and procedures is more about eliminating things than finding a diagnosis. Hopefully someday, with enough eliminations, we will come across something that tells us why Cale is the way he is. I'm also learning how grateful I need to be to have a husband to go through all of this with. I can't imagine doing any of this alone and Alex has been my rock since day one. God definitely knew what He was doing when He brought us together.

So, the search continues. I'm disappointed we didn't get any answers but at least by eliminating things we are that much closer to finding a cause.

Please sign here, here, here.....aaaand here.

2010-05-28T13:25:00.000-07:00

We officially sold our house and bought our new one earlier today. Papers are signed and money is transferred! Wahoo!!!! I had forgotten how much paperwork and hand strength a closing required. I learned that rather than getting better with my signature the more I sign it, the worse it becomes. I seriously felt like my hand had a mind of it's own after we were finished.

It still doesn't feel real that we own a new house. We're still living out of boxes and I have yet to make it my own, which I guess could be part of it, but regardless it is still so fun to wake up in this house each and every morning. I have already sought out my favorite part of the house, which is the bay window in the living room that overlooks the entire city. The view from this window is absolutely gorgeous! We are able to watch the sun go down and see the weather coming in. Right now all I can see is rain, but on most days you can clearly see the entire valley. Unfortunately, my kids also love this spot and I have quickly learned that I need to find a close and convenient spot for the Windex, since cleaning off their grimy little hand prints will become a nightly chore. :)

My parents are currently on their way to Missoula to see our house for the first time. I'm so excited to see them...it feels like it's been forever but in reality it's probably only been a few months. Cale is really excited to see them, too, which means he is currently screaming in his bed and refusing to take a nap. Oh, children.

The weather forecast is full of clouds and rain this weekend, which I suppose should be expected of a Memorial Day weekend in Montana. I think we'll spend most of it indoors and perhaps I can get my mom to help me finish unpacking! :)

I hope everyone has a terrific weekend!!!

The Red Mystery Blob

2010-05-27T13:52:00.000-07:00

Today is Thursday, which means I need to wake up expecting chaos.

Our day starts off with me sleeping in as late as I can, until I look over at the clock and tell myself that if I don't wake up RIGHT NOW and get my behind downstairs to wake up my kiddos, feed them breakfast, get their diapers changed and their little bodies clothed, I am going to be late dropping Cale off at school. It's a God-given miracle that I am able to get myself and my kids out the door before 9:00 AM on any given day, therefore having to be somewhere at 8:45 and actually getting there on time is a direct act of God.

Today was especially challenging, however, because it was pouring sheets of rain! Buckets, even! I'm not exactly sure why this change in weather threatened to delay my departure time...perhaps it was because I had to make sure Cale had all the appropriate clothing just in case his teachers decided to lose their minds and take a classroom full of preschoolers outside. Or maybe it was because the sky was dreary and it made me move a little bit slower than usual. Regardless, I found it incredibly difficult to get out the door on time.

I made it to Cale's school a few minutes late but the buses were still waiting out front which meant the teachers hadn't come out to help the students off, which further meant I wasn't officially late. Bonus 'Mom' points for me. I helped Riley out of the car and her freshly bathed and brushed hair was immediately plastered to her head from all of the rain. She now looked beautiful, especially with the fat lip protruding from her face. (more on that another time) By the time I walked Cale and Riley into the school we were soaking wet and looking like a pathetic trio of drowned rats.

After we dropped Cale off, Riley and I spent the next two and a half hours INSIDE. We cleaned up the house a little and then met a friend at the mall to let our kiddos play so that we could sit for a few moments and enjoy a quiet cup of coffee. It never ended up being quiet but the friendship and coffee was exactly what I needed. Before long it was time to brave the outdoors again and go pick up Cale.

The rain had not stopped and it was still pouring buckets. I ran with Riley to the front of the school and before I could get to the overhang that would shelter us from the wetness, one of Cale's teachers stopped me with quite a bit of force and very matter-of-factly told me that "my son was a GENIUS!". She then continued to tell me the long version of how Cale painted a picture today and the teachers around the school had all put bets on what the drawing was. She told me her interpretation of the drawing was a cowboy getting kissed by his mistress, but other teachers thought it might be a firefighter saving an old woman from a fire. She was quite sure that coincidences like that don't just "happen" and that Cale might have actually been trying to draw something. It was a good story but by now Riley and I are completely drenched and Riley is shivering from the cold.

I must say, this teacher's excitement about Cale's drawing perked my curiosity and I was looking forward to getting a peek at it myself once we got home. Cale must have been very proud of his artwork because he would not let go of the plastic bag that his drawing was wrapped in. He held onto very tightly the entire car ride home.

When we finally did get home, wet hair and all, I pulled his drawing out of the plastic bag and immediately saw the cowboy kissing a woman. I'm not convinced it's his mistress but it's a person none-the-less. I'm certainly not convinced, nor do I believe for a second, that Cale purposefully meant to draw this (HE'S ONLY THREE YEARS OLD, PEOPLE!), but I did proudly hang it on the front of our fridge, which actually says quite a bit because I love having a clean fridge with NOTHING on it. It's amazing what the pride of a parent can make a person do. :)

Cale still walks around the house and occasionally walks up to the fridge and stares at his beautiful masterpiece. He squeals in delight at his mystery red blob!

The rest of our day consisted of lunch and speech therapy, but now I have two very exhausted kiddos who are quietly sleeping in their beds.

Ahhh, this is my favorite time of the day. :)

Doctors get paid WAY TOO MUCH money...

2010-05-25T12:37:00.000-07:00

...or at least the ones in Missoula do.

I take that back, in part. I'm sure there are some exceptions to my rule and I really believe there are a handful of doctors out there that deserve every thing that's handed to them, however most of the doctors we've come in contact over the past four years have done NOTHING to advance our search in finding a way to treat my son. I can't even begin to write about how frustrating and disheartening this is. I'm left wondering if there is more that I could be doing or if I'm simply too "cooperative" with the medical community and so I'm left targeted as a blazing red bullseye. There has to be SOMETHING that SOMEONE can do to make it so that Cale doesn't have to go the rest of his life throwing up and writhing in pain.

If you read my post yesterday you can probably gather that our doctor's appointment did not go well. It was a waste of our time, really. The pediatrician we saw was more concerned about getting home by 5:00 than listening to my concerns. He told me that our appointment in Seattle was the "magical appointment" and that I would just have to wait until then.

So I asked, "Am I supposed to just let my son throw up eight times a day and be miserable for the next three weeks?"

"Yes, because there's nothing we can do."

OH. MY. GOSH.

If I were a person that cursed I'm sure I would have screamed several four-letter words at the response that had just come out of his mouth. This man of a doctor didn't even let the tears of a young mom phase him. Again, perhaps his wife threatened that he be home in time for dinner, or else, therefore he couldn't take an extra ten minutes to at least give me a few options of what to do between now and Seattle. The day I find a doctor who actually takes the time to sit and LISTEN to me, and then make a plan on how to go about finding what may be wrong with Cale, I promise I will bend over and kiss the ground he walks on!

Okay, my rant is over and I even feel a little better. On a positive note, I haven't actually seen Cale throw up today and even though he was in school for two and a half hours this morning, his teachers didn't mention anything to me. So I guess I should be grateful and see that as a sign of answered prayer. If you prayed for Cale yesterday, THANK YOU! For at least this morning, it worked!

Desperation

2010-05-24T14:10:00.000-07:00

There seems to always be SOMETHING going on with Cale. I usually choose not to write about it because if I did, this blog would solely be comprised of the "junk" he has to deal with and even though it's important and a huge part of our lives, focusing on what's "wrong" all the time is simply depressing. I feel the need, however, to write about what's going on with him today because I'm taking him into the doctor this afternoon out of sheer desperation, and perhaps those of you reading this can offer up a prayer. Or a lot of prayers.

I've watched Cale over the last eight to ten months get progressively worse in regards to his eating and digesting patterns. It started out with what I just assumed was really bad reflux. When the medicines he was on failed to work I was naive in thinking that we just hadn't found the right one. Initial symptoms that I remember noticing were spitting up every now and then, with an occasional grimace on this face when he had to swallow back down whatever had just come up. Today, however, the symptoms have progressed to Cale throwing up with EVERY feeding, at least once, and then throwing up two to three times in between feedings. Aside from losing his breakfast, lunch, and dinner, he has seemed to have lost total control over his body during these episodes. We've ruled out seizures so we know it's not that, but something is going on his little body that is causing these miserable side effects. He's resulted to laying down when he plays with toys because I think he feels he has more control of his body in that position. He can still sit up and walk but when he's having these bouts of whatever is going on, he chooses to lay down and be still. You can clearly hear gurgling and churning in his stomach that is most noticeable right after he eats or has a drink of water. He cries because he's in pain but thankfully has not refused to eat. Whatever is going on is causing GREAT stress in our family because we're obviously worried about Cale, but the physical demands of cleaning up vomit ALL. DAY. LONG is getting to the point of being too much bear. I HATE watching him suffer like this and I HATE even more that I'm not able to do anything for him.

I see what used to be my happy little boy slowly becoming unhappy in his misery. He's a trooper and has handled this better than anyone I will ever know, but I'm afraid he will soon "give up"; I certainly would have long before now.

We are scheduled to leave for Seattle on June 4 so that Cale can get "scoped" by the GI (gastroenterologist) doctor but at this rate I don't think we can make it that long. Cale's regular pediatrician is unfortunately out of the office today and tomorrow and so we will be seeing someone today that doesn't know anything about Cale, so please pray for wisdom for this new doctor. Please pray that they will take my concerns seriously and that he will quickly develop a heart for treating my son.

Our appointment is at 3:50 this afternoon so I will try and update you after we get home. THANK YOU for praying!!!

Goings On and Happenings...

2010-05-22T15:57:00.000-07:00

Wow, I feel like it's been FOREVER since I last posted anything about anything. I wonder if anyone ever reads the small amount of things I have to say??? Well, even if there is only one of you out there that decides to stop by this site, I suppose I will talk to you. Thank you for being so faithful!

Last Wednesday Alex and I finally moved into our new house! I must admit that I didn't allow myself to get very excited about moving until it actually happened, but now that it has, I am overjoyed and so excited about our new home! I love waking up in this house and I cannot wait to make it our own! The kids have done amazing with this new transition and have had so much fun exploring their different surroundings. In fact, yesterday I had to stop by our old house to grab a few things and Cale pointed to the house and shook his head "no", only to smile again until we pulled into the driveway of our new house. I guess that means we get a stamp of approval from him. Our new house has at least twice the square footage of our old one and I have been pleasantly surprised to find that we don't have enough stuff to fill this house. I even have bare cabinets, with NOTHING in them, in our kitchen! Not to mention an actual room to do our laundry, rather than having to transfer and fold clothes in the hallway. It is simply marvelous. Dreamy, even. This is the perfect house to have my kids grow up and remember as their first home.

Our best friends coincidently sold their house the very same day we did and just yesterday put a house under contract. I am very excited for them and can't wait to help them move. (moving other people's stuff is far more exciting and less stressful than moving your own, because at the end of the day you can just leave it and don't have the overwhelming task of unpacking it all!)

My parents are coming to visit Memorial Day weekend and I'm excited that they will finally have an actual room and bathroom to themselves. I'm sure that will make their visits a tad more comfortable since they previously had to sleep on an air mattress in the middle of our living room floor. :) For any of you readers that don't live here in Missoula, if you ever find yourself in this beautiful city and don't have a place to stay, our home is always available. :) Seriously.

In other news, Riley has started asking A LOT of questions. "What are you doing?", and "Why?" seem to be her favorite. I think some parents might get annoyed by such inquiries, but I have found myself loving it and thinking that she just might be the smartest kid to ever walk the planet. :) I think it's due to the fact that I've never had the experience of Cale asking me a hundred questions like most all toddlers do, and so now that I have one that is acting like her actual age, I am just amazed at her brilliance. I'm amazed at Cale's brilliance, too...just in different ways. :)

We head to Seattle in a few weeks for another doctor appointment for Cale. If you find yourself with nothing to pray about or just want to add something else to your list, please pray that this doctor will find SOMETHING and that there will be a simple way to treat it. Thank you!

Hallelujah!

2010-04-26T07:09:00.000-07:00

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

After an already chaotic morning, (Sundays are ALWAYS chaos no matter how well we try and plan ahead), we got a phone call as we were leaving church informing us that we had gotten an offer on our house! First emotion was pure excitement but then the reality of the offer not being exactly what we hoped for started creeping in. Alex spent the afternoon crunching numbers with our realtor. After a few hours we submitted a counter-offer to our potential buyers and within just another few hours they accepted! AAAHHHHHHH!

It's still so surreal knowing that we are actually going to sell our house and that we are actually going to move into the house we have so patiently waited for during the past several months.

I'll try and post pictures of the new house soon.

P.S. Cale's MRI went AMAZING! He did GREAT and it was ten thousand times better than I thought it was going to be. We should be getting a call from his doctor today so if I hear anything I will make sure and update as soon as possible!

MRI Day!

2010-04-22T13:48:00.000-07:00

Tomorrow morning we will check into the hospital at 6:15 am. Yuck. Cale is scheduled to have an MRI done on his brain, along with some blood work testing and a muscle biopsy. Double Yuck.

Cale had an MRI when he was about six months old and during our most recent visit to Seattle Children's Hospital, the neurologist suggested that we do another one since he's now three and a half years old. The first MRI came back "within normal limits", meaning 'I have no idea what that means'. The radiologist that read the results noticed some abnormalities but all of them were "within normal limits". I suppose my brain or your brain could also have some abnormalities but since not every person gets an MRI, we would never know. That's how I choose to look at it anyway.

I'm not necessarily nervous about or worried that they will find something different from the original results, but I am nervous about Cale being under anesthesia. He's been under it before - three times to be exact - and has done fine every time, but there's just something about watching your baby drift off to never-never-land that leaves me feeling uneasy. I'm also wondering about the muscle biopsy. It was explained to me in terms like "they will take a chunk of muscle out of his leg and then sew him back up". What exactly does that mean? Will he be in pain or in some sort of recovery period for a lengthy amount of time? Oh well, I'm sure everything will be fine. No good will come from worrying about it.

I hate that we have to do this. I hate that Cale has to go through this. However, the pre-surgery nurse did say that when he wakes up tomorrow he will most likely be looking for his mom. I will definitely be looking forward to that! :)

I will update how things went, as well as the results, as soon as I can.

Prayer for complete healing questioned?

2010-04-21T14:18:00.000-07:00

This post may be a little heavy and so I'll start out with something light. I saw an advertisement informing me that Dairy Queen is celebrating a birthday and so they're offering a "buy one Blizzard and get the second one for $.25". I'll definitely be partaking in that tonight!

I was driving down the street today, on my way to Starbucks to grab my usual Americano, when a thought hit me so hard I felt as though I had run into something.

My husband and I pray, DAILY, for complete healing in Cale. I go through seasons when I'm angry with God for not answering my prayer, but on the contrary I also go through seasons when I'm filled with so much patience, and faith, that I'm content in waiting for the day WHEN He DOES answer my prayer. Right now, on this very day, I'm somewhere in the middle.

I'm angry that I, one of billions of people in this world, was given a child with a disability. People have babies every day, healthy babies. Why me? A selfish but honest question. When someone says to me, "God chose you to be Cale's mom because He knew you were the best person for the job" only ignites my anger. Should I feel special or feel like I won some sort of an award? On the contrary, I'm also content knowing that Cale will most likely never be completely healed. I'm not saying that God is incapable of performing miracles but I've had long enough to think about the fact that there is a bigger purpose - a purpose that may never be revealed - behind why Cale is my son and I am his mom. I'm okay with that and I sometimes even feel special that I get to be apart of one of God's purposes.

Going back to the thought that hit me so hard while on my way to Starbucks. My prayer for complete healing in Cale might leave God feeling puzzled. He may be up in Heaven, looking down on me, wondering what on earth I'm asking of Him. He's confused because He doesn't view Cale as being sick. In His eyes Cale is not "disabled". Cale is perfectly healthy and it's me, and this world, that labels him as being different. So I'm left wondering what my prayer for Cale's life should be. I don't think there's anything wrong with asking for healing because I assure you that if I or someone in my family were to get sick, I would be the first one begging God for a cure. For whatever reason, though, I feel like I should be praying something different for Cale. I don't know what that is yet because this journey of raising him and being his mom changes on a daily basis, but I'm sure God will let me know what it is He wants, whether it's through a dream or while on a drive to Starbucks.

He certainly has interesting and unique ways of communicating to us.

Bedtime Stories

2010-04-07T15:07:00.000-07:00

First off I would just like to say a little something about my previous post. Someone, somewhere, must have said a prayer for me because ever since I wrote it I have felt absolutely marvelous! I've had several moments with my husband and kids over the past couple of days that make me just sit back and smile, feeling so incredibly thankful for the life God has given me. So if someone is reading this that prayed for me, I'd just like to personally thank you. God does answer prayers.

Okay, so while I was in Seattle with Cale for his doctors appointments and Alex was back home with Riley, they developed an adorable bedtime routine that has slowly, but forcefully, leaked over into our whole family's bedtime routine. While away, Alex and Riley would get into their pajamas, fill a cup of milk for Riley, and then head upstairs to our bedroom with a handful of books. They climbed into our bed, got under all the covers and read book after book, after book. This is slightly different from the routine we had before because we would still get into our pajamas and still drink a cup of milk, but we would stay downstairs and read books on the couch. We still try and do that but Riley throws one of her inevitable tantrums and says, "bed, Bed, BED" until we get the hint and lug both kids, plus ten or more books up the stairs and jump into our bed, get under all the covers, and read until all our eyes are heavy. I have a feeling that this routine won't die out any time soon and I must say, I'm rather taken with it.

Laying in bed with my whole family and seeing the joy the kids get out of being able to be in "Mommy's" and "Daddy's" bed is just enough to make a momma want to cry. I love these moments, and when all the books have been read and Alex and I each take a kid to their bedroom, we meet back in our bed and smile, so grateful for the two amazing children God has gifted to us.

I'm glad our evenings, like the ones I describe above, have been ending well because it's a sure bet that the morning won't involve that much joy. Riley has taken to 'hating' putting on clothes. She will cry and cry and cry until I finally cave in and let her run around naked. Anybody else out there dealing with a toddler that loathes clothes?

Not even sure where to begin

2010-04-05T15:58:00.000-07:00

I think the stress of trying to sell our home on a timeline, the demand to keep it sparkling clean, taking care of two very moment-to-moment earthly children 24/7, (who by the way do not understand my need to keep things clean), and watching Cale deal with the CRAP that was so unfairly given to him and me not being able to help in any way, shape or form, is making me lose my mind. Literally.

I have trouble focusing on little things, such as driving. My mind wanders to far away places and then all of a sudden I find myself pulling into our driveway without a memory of how I got there. Scary? Extremely. My desire to cook a nice and healthy meal for my family is hiding somewhere, probably in one of the boxes that we packed away into storage. Hopefully it returns when, and if, we settle down in our new home. Exercising - my main go-to for stress release and a cure-all for any bad attitude - has been far down on the list of things to do. I'm tired all the time. I go to bed AS SOON AS we put the kids down, which is usually somewhere between 9:00 and 9:30 and sometimes I don't get out of bed until 8:30 or 9:00, which is drastically different from my 4:45 alarm to get out of bed and get my butt to the gym. Even when I lay down to go to sleep, exhausted, I find myself laying there for at least two, maybe three hours, before I finally fall asleep. My mind is captive to what I need to be doing, what I could be doing better, and all of the worries and concerns I have about raising my kids. Even after sleeping nearly ten hours, I normally try and take a nap when the kids take a nap.

I find myself highly emotional, crying far more than I ever have over circumstances that may or may not warrant tears. Our home life is like walking on thin ice. I feel an overwhelming need to please my husband but ever since my attitude has shifted, that need to please has turned into resentment. I'm not sure if our attitude is effecting the kids' attitudes or if it's the other way around, but some nights it takes everything in us to just get through it and make it to bedtime. Survival is key right now.

I'm sure this post has made it seem as though I truly have lost my mind or that it may lead to assumptions that somehow my marriage is on the rocks. There may be a little truth to me losing my mind but thankfully my marriage is strong. Alex, though at times makes me want to pull out every last strand of my hair, is the best man in the world. I love him more than anything and thankfully he loves me back just the same. I'm trying to decide if this is just a season of life, having little kids, that makes a mom feel like she has no identity other than "mom". Is it worth it to get "dressed up" for an errand to Target or to a play group with friends, just to come home and take it off and put on my sweatpants - what I wished I could have been wearing the whole time? I walk by the shoe section of stores and dream about buying those three-inch, must-have, high heels. But then the reminder that I would have absolutely no where to wear them to creeps into my mind and puts a small frown on my face. Is this just a season of life?

Without a doubt, I experienced some level of post-partum depression after giving birth to Cale. Those were very traumatic and different experiences from what I'm dealing with now, but I wonder if a small amount of depression is present in my life? Or is what I'm feeling normal to every other stay-at-home mom out there?

I've definitely put myself out there in this post and perhaps I should have kept it secret in a journal, but there's something freeing about being truthful about who you are and what you're feeling to other people. I've tried hiding my emotions and even tried pretending as though they weren't there, and that leads to no good. I'm sure of that.

I go through times of desperate prayer, basically giving God an ultimatum, which I always realize is silly and I picture Him up in Heaven, looking down at me, and laughing. I go through very dry prayer which is basically giving God the two minutes I have before I fall fast asleep, and then there is the kind of prayer that makes me certain that when I wake up in the morning and go into Cale's bedroom to wake him up, I'll miraculously find him playing in his room and when he realizes I've opened his door, he'll look at me and say, "Geez, Mom! What took you so long?" And then he'll run out his door and down the stairs, grab a big box of Lucky Charms out of the pantry, swinging the refrigerator door open and lugging the gallon of milk up on the table, spilling it everywhere as he tries to get it in the bowl, and then chowing down at the breakfast table. For whatever reason, I'm never disappointed when I wake up and realize that my prayer has not been answered. I simply view it as "not yet".

God is capable of anything, therefore I know He is capable of changing my attitude. Positive energy - that's what I need. Here's to waiting...

Fishing!

2010-04-03T13:28:00.000-07:00

Thanks to me, my wonderful husband is on a guided fly fishing trip down the Bitterroot River as we speak. He was so deserving of something like this and so earlier this week I called my father-in-law and begged him to take my husband away for a day. Turns out it didn't require much begging and he called me the next day and told me what he had planned for the two of them. Alex isn't much of a fisherman but he's never fly fished before and so I think he may come home hooked. No pun intended. :)

I sadly don't think I give my husband enough credit most of the time. I'm incredibly thankful for him and I think I have a pretty realistic grasp on all that he does for our family, but I know for a fact that my attitude and my words don't always reflect that. He's one of the most hard working individuals I know and even if his boss tells him he can have a day off, to me I know that means he might be home ten minutes earlier than normal. He works incredibly hard and holds himself to such a high standard. After putting in a full day at work, he willingly chooses to shake off whatever stresses he has at work and leaves them at the office, allowing him to just be a husband and a father, rather than a husband and a father who is consumed with whatever happened at work earlier in the day. He immediately helps me with the kids, is interested in what happened in my day, and the phrase, "what can I do to help you around the house" is even muttered a couple times a week. He truly is selfless and more than I could have ever hoped for in a husband and a father to my kids.

With that said, work has been extraordinarily stressful this year. Our home life has been up and down with the kids being sick, us being sick, and the emotional tiredness we both experience every day with Cale, and the stress of trying to buy and sell a house. It takes a great amount of effort on both of our parts to see the glass half full most of the time. Alex, in my opinion, is the glue that holds all of us sanely together. :)

So I sent him fishing. It's only a day trip and I know that it's not going to take away anything that awaits him at home and work, but he deserves a day away from me and the kids. Plus, he's with his dad and if you've never had the pleasure of meeting Rick Burkhalter, he's a true gem and someone who can definitely bring life to a party. I'm sure they're having a blast and I can't wait to hear all about it when he gets home.

Blessings and tears should not coexist

2010-04-01T11:23:00.000-07:00

Yesterday, after months and months and months and months, AND MONTHS, of trying to get Cale approved for Medicaid under some special government waiver, we finally got the news that Cale officially is on Medicaid as of 03/01/2010. PRAISE GOD! Not only does this lift a GIGANTIC financial burden off of our already financially stressed lives, but it opens up hundreds of doors for the type of care Cale can receive that he couldn't receive before because of money. The sky is the limit and I cannot wait to see how God uses this new "money" to help Cale reach his upmost potential. An answer to prayer - AMEN! I feel like nothing can stop our little man now. Watch out world! Here comes Cale!

This is obviously a huge blessing and yesterday when the Medicaid "committee" left our home I had to hold myself back from hugging each and every one of them, and when they finally closed our door behind them I burst into tears and buried my head into my husband's shoulder. Tears of joy and amazement came flowing.

But now, 24 hours later, I find myself in a heap of sadness. I HATE that Cale has to be under some governmental program because he's disabled. I'm so sad for him and I feel terribly guilty because I'm even sad for myself. The dream I had for this life is nothing like I had imagined it. I would love to fill our house with more kids (okay, maybe just one more), but that just seems impossible with the kind of demands and time just one child takes. Giving Cale the best is certainly not adding another brother or sister to his life that takes the time away from us that he desperately needs. I hate watching how easy everything is for Riley. Living is seemingly effortless for her and it takes Cale's best focus and determination to try and go up and down a slide on his own. Kids run circles around him and it breaks my heart to see the disappointment in himself. I just hate all of this, plain and simple.

But I do love my Cale. I'm surprised my heart can hold this much love.

Thank goodness for bunnies!

2010-03-31T05:43:00.000-07:00

Praise the good Lord above for the new bunnies He brought to the pet store in the mall!

Seriously.

For the last month Cale has asked to go see the dogs at the mall nearly every day, but what he really means when he asks for the dogs is that he wants to see the bunnies. Perhaps with Easter just around the corner the bunny supply has been low and there haven't been any bunnies for the last month. Cale points to the bunny display area and very sweetly does his sign for "bunny", and when I tell him there are no bunnies he gets that infamous frown on his face and makes me lift up the little bunny "house" to prove to him that there are indeed no bunnies. He doesn't throw a fit, he doesn't cry, but he frowns and keeps his sign for "bunny" up in the air for everyone to see until we are completely out of the mall and sometimes even the entire car ride home.

But last night when Cale asked to go see the dogs we were ecstatic to see that there were four new bunnies for him to ooh and aah over!!! He was so happy and kept his nose smashed up against the glass until the bunnies were no longer exciting and he realized there were fish and turtles to still be seen. Who knew a bunny could make a kid so happy. Maybe that means when it's time to get his picture taken with Easter Bunny he won't be freaked out. Here's hoping.

I love how the littlest of things can bring so much joy to his life.

Mission Impossible

2010-03-24T06:31:00.000-07:00

There is a big difference between keeping your house clean and keeping it "open house" clean. I'm naturally a clean person, largely due to my mother who would call my room a pig sty if I had one lonely sock laying helplessly on my bedroom floor, but constantly mopping floors, scrubbing sink basins, and rotating loads of laundry is exhausting my inner need to be clean. Add into the mix two incredibly messy toddlers and you have what I like to call a "mission impossible". Please pray that our house sells soon so that I don't become clinically insane.

On Sunday I turned 26 years old. Alex's birthday is only a few weeks before mine and since I was in Seattle on his birthday, we decided to celebrate jointly by having our friends over to our house for dinner. Four adults and four children equated to a fabulous chaotic and fun time. I got some really nice headphones for the gym and also a new lens for my camera! It's supposed to be 60 degrees today and so I think I'll take the kids somewhere outside to test it!

My mom is coming to visit later today. Thank goodness for moms! I'm looking forward to having someone to play with during the day while Alex is at work. I'm not sure what we'll do but I'm positive her time here will include some shopping and good meals! Hooray!

I'm itching for spring to be here for good and although today is forecasted to be absolutely gorgeous, I'm preparing myself for at least a few more cold snaps and probably another big snow. Blah. I'm ready to play outside!

Hopefully I can capture some good photos today and have them up on facebook by tomorrow. The last few times I've tried taking pictures of Riley she's thrown a fit and told me "no". Cross your fingers!

happenings...

2010-03-11T13:47:00.000-08:00

Wow, where do I begin? The last several weeks have been crazy, to say the least. We ventured to Cabo sans kids, put a 'For Sale' sign in our yard, and toured the Pacific North-West hospitals with Cale. I will try and sum up the above in the least amount of words possible. First up, Cabo!

Glorious Cabo. Six days and seven nights of pure bliss. Even though leaving the kids was complete torture and I cried like a baby, it was 100% worth it and I would do it again tomorrow in a heartbeat! I love my kids, obviously, but spending that time with my husband in such a beautiful place was like getting a second honeymoon! A honeymoon with our best friends, however. Not that you would ever bring along your best friends with you on your honeymoon but you catch my drift. We went with Thaiv and Crystal Armerding, who also left behind their two little ones, and they were the perfect traveling companions. I can't speak for them, but we never once got annoyed or irritated with their company. We spent our days lounging by the pool, zip-lining and rock climbing, playing beach AND pool volleyball, and just pretending to be kids again without the responsibilities looming back at home. It was a PERFECT way to spend a vacation! I can't wait for the next one. :)

We decided, rather quickly and unexpectedly, to sell our house. One day we were perfectly content in our home and the next day we were pounding a 'For Sale' sign in our yard. A God-given opportunity was given to us and now we find ourselves in the stressful and chaotic position of trying to sell a house in today's rough economy. I've found it nearly impossible to keep my house "open house" clean day in and day out and the stress of finding crumbs on my floor is about to put me over the edge. Two little kids who are constantly into anything and everything basically makes me a human vacuum as I chase after them. The God-given opportunity that was given to us is the chance to purchase a home in an incredible, clean, established neighborhood. This house has more than double the space we currently have and it has a view overlooking the city that just screams God's greatness! Missoula is truly a beautiful place. It's in the school district of an elementary school that is supposed to be THE BEST for children with special needs and I want so badly for Cale to go there. The school and our church are within walking distance and if you stretch it a bit so is Alex's office and our gym. It really would be the perfect house for our family. We signed a buy-sell agreement a few weeks ago contingent upon the sale of our house. We've had two open houses so far which has attracted a fair amount of traffic and a few people who have come through on their own. Please PRAY that our house will sell soon!

On a completely different note, Cale and I took to the skies and flew to Spokane and Seattle to see a neurologist and a gastroenterologist. The reason behind seeing the neurologist in Spokane was to either confirm or rule out the possibility of Cale having seizures. (I believe I posted about this awhile back) After having to see my baby's connected by hundreds of wires, the final word came back that Cale is NOT having seizures! Wahoo! We flew from Spokane to Seattle and saw the GI doctor, however this appointment was a complete waste of our time and money. Alex is going back in May with both kids and I will explain in a minute why I won't be there. Traveling with Cale, alone, was a bit frightening. First off, I LOATHE airplanes. I cry when I walk through security because I realize then that there's no turning back. I cry when the airplane starts to taxi and then when it finally reaches the runway. Taking off is the absolute worst. Tears are definitely flowing by then. This time, however, I was completely calm. I don't know if it was because I had to focus so much on Cale that I didn't have the time to focus on my own fears but I made it through all of my flights without one single panic attack. Success! I did however, not like having to sit through those doctor's appointments without Alex there for support. I hate that we have to take Cale to all of these specialists and I hate that, for the most part, no one wants to try and help him as much as we do. Sitting in those offices while I tell the doctor everything that is wrong with my child is absolutely heartbreaking and at times impossible. Doctors don't ever seem to catch on to the emotional side of these appointments. Oh well, we're doing the best we can for Cale and I suppose that's all that matters at the end of the day.

Oh, and why I won't be going with Alex when he goes back to Seattle in May is because I am lucky enough to be able to take a girls only trip with my mom and sister! Oh my goodness, we have talked about doing this for years but nothing has ever come to fruition. This time, though, we've taken the mindset of "Go big or go home!". Obviously, this trip wouldn't be chosen by everyone, but for me it's a mini-dream coming true! The last day of April I will fly to Seattle and then on to Los Angeles, CA to spend four days with my best girl friends! We are going to an episode of "ellen" (whom I just think is the funniest person on the planet) and then to disneyland one of the days. Thanks to my dad, who hooked us up with the "ellen" tickets, he also is hooking us up with a tour of the Warner Bros Studios lot! Again, I realize this may sound lame to you but it is so exciting for me! :) I guess this makes me a nerd but I already knew that about myself anyway.

So that's what's been going on lately in my life. I must apologize for my seemed disappearance off the face of the earth but I am indeed still here and will hopefully be better about blogging since we are, for the most part, settled back in.

Here comes the comic relief!

2010-02-13T14:41:00.000-08:00

Comic relief: that is the best way for me to explain the personality of my dear, sweet baby girl. Cale brings a certain amount of seriousness to our lives and although he is incredibly sweet and can even bring on bouts of belly laughter, he is sure to sprout grey hairs upon my head far sooner than I would like. Riley, however, is just plain hilarious. Watching her grow has been one of the best experiences of my life and I literally look forward to each and every day with her. (well, most of the time)

She is coming up on nineteen months of age and I already cannot remember life when she was not with us; it feels like she's been a part of our family since the beginning of time. I remember fretting and obsessing over when and if she was reaching her milestones at the appropriate age but now I have let go of those worries and come to realize that she is completely normal - whatever that means. She has let me experience what raising a typical developing child is like and for that I am so grateful. Watching her move and learn how to do things on her own has engrained in my mind even more how genius God is to make us the way He does. Amazing, simply amazing.

Riley loves almost anything that requires her to move. She is always on the go and I swear if she didn't eat as much as she does she would be as thin as a toothpick. She likes to run, dance, and is just now experimenting with how to jump. Running back and forth on the couch will entertain her for hours. She is mastering her voice and learning to form words. She will repeat almost anything I ask her to but sometimes it comes out in a completely different language. Alex and I put a small amount of effort into teaching her sign language when she was about six months old but didn't push her too much. Now, however, she communicates more through sign language than actual words and Cale has been her biggest teacher. She watches him intently and mimics his interpretations of signs. It's incredibly cute and I'm thankful she's picked up on it so that she can better communicate with him later on down the road. She is the best little sister I could ever dream up for him. She knows how far she can go when wrestling with him and is, for the most part, very gentle. She shows incredible patience for a toddler who thinks the world belongs to her. She loves to be the center of attention and is most content when she knows all eyes are on her. Alex and I, however, do nothing to cut down her ego and are completely smitten.

Riley is quickly becoming a little girl and it's hard to believe it has been almost two years since we brought her home. I remember feeling so overwhelmed and as if life would never be "easy" again, but now I can honestly say she has only brought joy and love to our lives. I love having a daughter and dressing her up and doing her hair. I also love the fact that just like Cale is an exact replica of Alex, Riley is a true mini-me. For once people can safely assume she belongs to me. :)

Serious with a side of comic relief

2010-02-12T05:38:00.000-08:00

I promised I would write something more positive and uplifting and so here is me keeping with my promise!

Cale and Riley...Riley and Cale. Those two little bundles of joy have a way of making my life miserable and delightful all at the same time. I mean that in the best way of course. Each have their own and very different personality, both which just upon thinking of them bring a huge smile to my face. I cannot even begin to fathom my life without my two kids...how boring it would be.

I'll start with my little man. Cale is definitely the more serious of the two. He certainly has his silly moments and can always enjoy a good laugh, but I can almost guarantee that years from now he will be the one who dreams up some new techno gadget. He will do almost anything to get his hands on a cell phone, computer, iPod, wires, the vacuum cleaner, zippers, the TV, and pretty much any kind of button that screams out his name. He will play with a normal kid toy if worst comes to worst but his preference is definitely all things "not suitable for children". He is obsessed with how things work and will not give up until he sees it for himself. For example, last summer Alex was repairing one of our sprinkler heads in our front lawn and once Cale saw him pull it up from the ground, it was love at first sight. He NEEDED to get his hands on that sprinkler head and see for himself how it sprung up and down, twisted and turned. Life could not go on until that happened. Another example, most kids love flashlights because they can shine the light wherever they please. Not Cale. He loves flashlights because you can turn the bottom and see where the batteries go. Cale also loves train sets but not because it's fun to watch the train go 'round and 'round the track. He loves trains because it's fun to see how the pieces of track fit together. I used to get irritated that he wouldn't play with toys in the way they were intended but now I think I'm on my way to just embracing it and hoping that maybe one day he's the one to find the cure for cancer.

Cale is also becoming a champion at independent walking. He's even started to think about navigating steps on his own! We're not quite at that level but the fact that he's getting brave enough to try is a huge accomplishment. He's getting faster and sturdier and just last night he was romping around the gym floor at our church with a full-size basketball in his hands. Now that's what I call coordination! Walking has given him more confidence to play with other kids and it is amazing to see him right there with all the others.

I know most kids have this label but I like to think that Cale is the best: he is a SPONGE! Sometimes I think he is learning signs faster than I am! I'm not sure how many signs he has but he has enough to effectively communicate most of his needs. He knows the signs for all of his colors and even though I think he's a bit color blind like his daddy, he knows all of his colors, too! He can tell me how old he is by using his other hand to hold down two of his fingers so that only three stand up. He is quickly mastering his vowel sounds which hopefully means he will be able to say actual words soon. Right now he can say "dada" and "poppa" and although I wish "momma" was somewhere in there, I'm so proud of him. He loves school and very half-heartedly gives me a wave good-bye when I drop him off. I'm pretty sure if he could talk he would be rubbing in the fact that he gets to go to school and Riley doesn't.

I love Cale so much but the thing I think I love most about him is his sensitivity. Not that this ever happens, but if Alex and I are arguing Cale gets extremely upset and starts to cry, which means that Alex and I can never argue for too long. I like to think of Cale as our mediator. If Riley is upset and crying, Cale is the first one to find her favorite blanket and bring it to her. If Cale ever sees that I'm crying he will come over and give me a big hug. He loves to give kisses whenever asked and if he's in the right mood, he'll even scratch your back for you. He hates conflict and so if he's playing with a toy and Riley is crying because she wants it, he doesn't hesitate for a second to give it to her. (which by the way is doing nothing to help Riley learn that she can't have whatever she wants) His personality is so sweet...

I could go on and on about Cale but I suppose I should leave it at that. I meant to include Riley in this post but I guess I'll save her for another one. For all the worry and stress that Cale's disability has brought to my life, the love and joy he brings trumps it all. What I wouldn't do for my little man...

"Buildings"

2010-02-10T14:55:00.000-08:00

Every time I go to say or write the city of "Billings", it takes everything in me not to write or say "buildings" instead. Long story short, Alex's little brother always called it that when he was younger. It cracks me up for some weird reason.

Billings is where I was for over a week after just returning home this Monday. We left on a Sunday, spent seven delightful days with my family, and after staying to root the New Orleans Saints on in the Super Bowl we decided it best to head home and return to the daily grind of life. It was so refreshing to get a change in scenery and have the support from my mom, dad, and sister right in front of me. Alex obviously had to stay here in Missoula and so it was just me and the kiddos. My dad was able to take Monday off, conveniently after Billings received a huge dump of snow, and so it was fun to bundle the kids up and take them outside. Cale was fine as long as "Poppie" was carrying him up on his shoulders and Riley was content as long as she felt like she was helping shovel. I thought they would be thrilled to jump into the snow and throw up in the air but they wanted nothing to do with any of that. It could have been because they were both too bundled up to even move, but we'll just leave that up to speculation.

I needed that week with my parents. Daily life with Cale seems to be getting harder and harder, both emotionally and physically, and although Alex is my rock and the person I go to with everything, he can't be my support when he, too, is hurting in the same way. I think it was nice for him to have a whole week with the house all to himself, not having to be directly involved caregiving for Cale. As for me, my mom always has a way of lifting my spirits and knowing exactly what I need before I do. She makes me laugh and let's just be honest, shopping is way more fun when it's with my mom! My dad has a way of lifting my spirits, too. He has a way of silently letting me know that he loves me more than anything and that he would do anything to make life easier for me. The week was relaxed and filled with incredible food, a little retail therapy, and lots and lots of love and laughter; exactly what I needed after receiving news about Cale and the possibility of him having seizures.

But now we are home and life has continued on just as I had left it. Laundry needs to be folded, bathrooms probably need to be cleaned, Cale returned to school and all of his weekly therapies, and I remain in no better condition than when I left. Things with Cale are still hard and it is, at times, a minute-by-minute struggle to maintain focus and patience.

On a good note, I have the appointments for Cale scheduled in Spokane and Seattle. He will be seen by a neurologist on March 5th in Spokane and then by a gastroenterologist on March 8th in Seattle. At least now I feel like we're doing something instead of just sitting around and watching. For some reason I have high hopes for these two trips. We've seen enough specialists and doctors that I should know better than to get my hopes up because time and time again we leave disappointed and knowing nothing different than when we first came. I feel different this time, though. I feel like we might actually get some answers as to why Cale is having such a difficult time swallowing, eating, and then keeping it in his stomach once it goes down.

My last few posts have been kind of downers but I promise to update you all on something positive next time. :) Both of my kids are growing like crazy and I have so many updates to what they're up to these days.

In the meantime, I hope those who read my blog are doing well. Is anyone else sick of winter and ready for SUN?

ask and you shall receive

2010-01-29T13:34:00.000-08:00

Earlier this week I had a meltdown and consequently went on a mission to demand answers as to why Cale was displaying some of the behaviors he had been showing over the last six months or so. My husband called the doctor, because I knew I would either break down in tears over the phone or sulk back into my timid and very non-assertive ways and agree to an appointment that was months out. He called on Wednesday and she agreed to see us today, Friday. I felt a sense of relief knowing that we were finally doing something proactive in search for our answers.

Cale has extreme reflux, or so we have always thought and I still continue to believe. He's had swallow studies performed and has been on the medication Prevacid since he was six months old. We've tried a handful of different medications but none of them have ever been helpful, even the Prevacid, but we were told that if he didn't take it the reflux would get much worse. So, under doctor's orders, he's been on it for over two-and-a-half years. Never once have I thought it cured, or even relieved, the symptoms he has shown practically since birth. As a baby he spit up CONSTANTLY. I remember feeding him tiny amounts at a time and then walking with him upright for hours, literally, in hopes of keeping his meals down. The instant I set him down he would spit up. Over time, when he was about eighteen months old, the spitting up subsided but the physical evidence of his reflux remained, even to this day. You can hear the acid come up in his throat and you can see him painfully try and swallow it back down. For the last six months I have felt that his reflux has gotten worse, but since this is all we've known throughout his entire life, I guess I kind of brushed it off as just another check mark on the list of sucky things he has to deal with.

Going back to my meltdown earlier this week, I finally became fed up with watching Cale have to live with something that interferes with so much of his day-to-day activities. I can't even read him a book without him jerking his entire body in order to keep his meals down. His fine motor skills are already compromised but when you add in the reflux it is almost impossible for him to control any part of his body. At times, the work of having to swallow whatever is coming back up knocks him off balance and makes him fall to the ground. What child should ever have to live with something like that? So, the call to the doctor came next and today we argued our case to look deeper into what might be going on in his little body since the medications were not working.

We got an answer, and even made a plan, but it was nothing like what I had imagined. I honestly thought we would go in there, give a description of what was going on, and then our pediatrician would refer us to a GI doctor and they would scope him and put him on a different, stronger medication. Our plan though, instead, is to travel to Seattle to see the GI doctor. There he will "prove" that Cale either does or doesn't have reflux. Despite his diagnosis, we will also travel to Spokane to see a neurologist. Our pediatrician thinks the episodes of Cale trying to keep the acid down are actually seizures.

Seizures.

Seriously?

I have a flood of emotions running through me right now but the only thing I can come up with to say is that this sucks. It's not enough that he was born premature and has undiagnosed developmental delays, but now we have to add on seizures, too? Seriously? I feel like I just got punched and I keep trying to get up but every time I do I get punched again, and again, and again. I hate this, I really do, and I would do anything to make it better. Now every time I see Cale trying to overcome what I thought was reflux, I am fearful that he is actually having a seizure. Is he having them at night when I'm not with him? That thought alone makes the hair on the back of my neck stand up and my stomach to twist in a series of knots. I don't want my baby boy to be having seizures. I want him to be able to enjoy being a kid.

I feel like I'm back in that place. That place where I don't want to go anywhere, I don't want to see anyone, and I don't want to do anything. I'm back in that place where it's emotionally difficult to be around normal developing children. I honestly hate being here but I don't know how to get out. I want to be happy and enjoy my children the way other moms get to enjoy their children.

It's ironic that just yesterday I chose to focus on a verse about how God made each and every one of us perfect and nothing about us is a mistake. We are wonderfully made. But today I find myself questioning God and wondering what His plans are for Cale. Why did He make Cale the way He did and why this week, a week I so desperately wanted to focus on the positive, have we been attacked with such negativity. My perspective is wrong, I know that, but I don't know how to change it.

How do you rejoice in suffering?

Psalm 139: 13-16

2010-01-28T05:57:00.000-08:00

Psalm 139: 13-16

¹³ For you created my inmost being;
you knit me together in my mother's womb.

¹⁴ I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

¹⁵ My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,

¹⁶ your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Today I am choosing to focus on this passage. I've always believed with all of my heart that Cale was not a mistake and that God made him the way he his for a very perfect reason, but it's nice to be reminded of this passage. It's a good one!

HATE to feel this way

2010-01-27T12:46:00.001-08:00

Dear Cale,

Today I became very frustrated with you. I was so excited to show you the awesome coloring books and stickers I bought for you while you were at school. I thought for sure it would bring a huge smile to your face. I got frustrated with you because you weren't able to peel the paper off the back of the stickers. I got frustrated because you didn't understand that the sticky side had to be face-down on the paper. I got frustrated because you wouldn't accept my help. Once I realized I was frustrated with you, though, I became angry. Angry because you weren't able to enjoy the things I thought for sure would bring you joy. Angry because I was mad at you. Angry at myself for letting me be mad at you. Angry because inside I knew that you wanted so badly to be able to peel the paper off the back of the stickers yourself, and here I was getting frustrated with you because you couldn't. I saw you watching Riley do it effortlessly and I can only assume you were wondering why it was so much more difficult for you. I was mad that I had spent money on something you didn't seem to care about. I was just plain fed up with it all.

But then all of that frustration and anger turned into tears. I was embarrassed that you saw me cry but thankful that you didn't know the reason behind those tears. What kind of mom am I to lose control in front of you? What if you did know that I was crying because I hate the fact that you are disabled? I don't ever want you to know that I sometimes get sad when I think about why God made you the way that He did.

I wish I could stop time because I'm realizing that as you get older, you too are realizing your differences. You get frustrated easier and are harder to make happy. My little boy who screamed in delight over a simple sticker is slowly disappearing. How do I get you back? I would do anything to get you back.

I hate that you asked to take a nap instead of play with your coloring book. Since when did sleeping become more fun than playing? I hate that you shook your head when I asked if I could read you a book before nap time. I hate that my attitude reflected my frustration.

I felt guilty as soon as I put you in your bed and you told me that you loved me. Today I was not worthy of your love. I wish you knew how much I loved you and that I would do anything and everything to make life easier for you. You're only three years old and already you've faced more challenges than I have in my twenty-five years of life.

I hate that.

Perhaps a bit of bad news?

2010-01-26T13:12:00.000-08:00

Cale has been "walking" for almost two months now. I am putting the word walking in quotation marks because he only uses this form of transportation during situations he is comfortable in. He walks around our house pretty well but even then sometimes chooses to "knee-walk". I would say he uses walking as his main form of getting around 50% of the time. This in and of itself is to be celebrated and praised from the depths of the earth to the highest of heavens considering doctors were not even able to tell us with certainty that he would be able to walk. Walkers, crutches, and wheelchairs were always on the forefront of our minds. Never once did we allow ourselves to expect the best, because time and time again, Alex and I were always left discouraged, disappointed, and sulking in a dream that, yet again, had been lost.

Today, during one of Cale's regular speech therapy sessions, I finally asked his therapist a question I had been withholding for over a year. I asked if she thought and could predict, based on the high number of kids she has treated , if she thought Cale would ever be able to talk. She lowered her head, sighed, and looked straight into my eyes and told me she wasn't sure. She had treated kids, like Cale, that ended up being verbal and also treated kids that never learned to talk. My dream of hearing Cale SAY "I love you, Mom!" was instantly crushed. Cale being able to communicate with his friends was all of a sudden a far distant hope. A mother never, ever, in a million years wants to hear that her son will never be able to express his dreams, his wants, and his desires. How frustrating to him that must be. I should have never asked and just believed that God is capable of ALL things and even triumphs the most knowledgeable and credible doctors.

One thing, though, that is always constant and present in Cale's life, is that he is smart, determined, and one that fights against all odds put against him. No one ever thought he would be able to walk independently, and look at him now. For now, no one thinks he will ever be able to talk, but I choose to put my hope in God and believe that with Him, all things are possible.

Pueblo Bonito Resort and Spa

2010-01-13T15:57:00.000-08:00

I've been holding off writing about this because when we first booked our vacation it seemed like FOREVER away, but we are officially within almost a month of leaving and I simply cannot withhold my excitement any longer!

Alex. Me. Thaiv. Crystal.

The above mentioned people used to be a group of four very good friends. Alex was in Thaiv and Crystal's wedding and both Thaiv and Crystal were in our wedding. We used to be able to call each other up on a Friday night and spend countless hours arguing over what we were going to do. Movie? Game night? Go out to dinner? The world was our oyster! We took spontaneous trips to Big Sky to ski and quick trips over to Spokane to see concerts. We even took a five day cruise with them down the Baja. But then one day Thaiv and Crystal decided to go ahead and get themselves pregnant. Five months later and whoops, Alex and I were pregnant, too. Over the course of three years we went from a quiet group of four to a very loud group of eight. Thaiv and Crystal now have two kids and we, of course, have our two. I can't imagine my life without all of our children in it because I love them all to death, but I can't recall the last time the original group of four friends was able to go out and enjoy themselves without a child attached to one of our hips.

Well, that day is arriving very, very soon! On February 23 we will take to the skies and head for Cabo San Lucas, Mexico!!! Although each of us is anxious and hesitant in our own specific way about leaving the kids for an entire week, I'm pretty sure all of us are bursting inside with cartwheels and flip-flops.

Crystal and I are planning a day to ourselves before we leave to get pedicures, waxed, and tanned (spray tan, not skin cancer), and hopefully the guys will follow suit and at least get a spray tan with us. I'm not entirely sure I feel confident in a bikini at the moment but hopefully we'll be having so much fun that I won't even remember to care. :)

Anyway, so that's what I have to look forward to in about a month! Mexico here we come!

Oh, and did I mention that I am terrified beyond belief of flying? I shed tears on the airplane that get me weird glances from strangers wondering what on earth could be wrong with me. The last time I flew anywhere with Thaiv and Crystal was when we flew down to CA to board our cruise. As we were standing in line waiting to be boarded, Thaiv looked outside at our airplane and said, "Erica, is the wing supposed to look like that? I don't think it's supposed to look like that. Something must be wrong!" I immediately burst into tears and nearly stayed back in Spokane. If Thaiv knows what's best for him he better not make any comments about the safety of our aircraft.

It's not about me

2010-01-08T06:32:00.000-08:00

At least once a month I meet with a group of moms that all have children with special needs. A few nights ago we met up to have dinner and chat about life. One of the moms referenced a quote from the book, The Purpose Driven Life: "It's not about me." She was putting it into the context of how sometimes she feels guilty for being sad that she has to go through the experience of having a child with a disability. She believes it isn't about her and despite trying not to make it that way, selfishness always finds a way to creep in. We finished the night eating way too much dessert and then I drove home, not really giving a second thought to the idea of it "not being about me".

I believe in an earlier post I admitted to not crying about Cale in a long time. Life had been pretty good and Cale was making progress. My efforts to keep the positive on the forefront of my mind must have been working because I hadn't had a reason to be sad in quite some time. For whatever reason, though, last night I broke down in tears. It honestly surprised me a little and I felt awkward crying in front of Alex. I didn't want him to see me like that, weak and broken. Cale also saw me crying and I can't help but wonder if he knew the reason behind my tears.

I can't really pinpoint a specific event that all of a sudden made me so sad. Yesterday, both Cale's teacher and his speech therapist commented on how hard of a worker he is. They continually praise his determination and patience. Cale has to work for everything, from something as small as stacking one block on another, to maintaining his balance while remembering to move one foot in front of the other, making step after step after step. Things that other kids don't even have to think about Cale has to give all his concentration and attention to. The praises he receives from his teachers make me happy and so proud, but they also put a lump in my throat as I try to not be sad that Cale has to work for everything. Simple play is work and I can't help but be sad that his childhood will never be normal or easy. Some of my tears were for Cale, wondering if he's beginning to understand or question why he's not like the other little kids.

The rest of my tears, though, were feelings of guilt pouring down. It's hard to know if I'm a good mom and if I'm being the best advocate I can be for my son. For instance, I'm used to Cale getting pushed around and having toys grabbed right from his hands. Even normal kids experience that. I'm used to watching Cale chase hard after a group of kids, only to reach them and have the kids turn right back around and run a different direction. Cale never gives up, though - he'll continue to follow them. I'm used to watching Cale look at other kids, knowing that he's wanting to be able to do what they are doing. I even see that as he watches his sister. I'm used to Cale getting frustrated when he realizes he needs help. Last night, though, he was on the floor walking around on his knees. A child in one of those Fisher-Price cars ran right into him. Cale fell face-forward and the child continued to move over him until half his body had disappeared under the car. As I watched and looked for Alex to come swoop him up, Cale awkwardly tried to get up, and once he was free, he didn't even cry. He simply moved out of the way. Unless Cale gets hurt, he doesn't cry when other kids do things to him. He doesn't cry if someone pushes him over or takes a toy away from him. He doesn't cry if kids run away from him and he can't keep up. He doesn't cry when he realizes he can't do something on his own. He doesn't even cry when he gets run over by a toy car.

Is this a sign that Cale simply accepts being who he is? Or is it a sign that I'm not protecting him enough and he's gotten to the point where he thinks he deserves to be treated this way. I don't know where the line is between being an advocate for my son and being an over-protective mother. I want Cale to be tough and learn to stand up for himself, but he's not doing those things for himself and so I can't help but wonder if it's me that needs to stand up for him. Parenting a child with a disability and knowing what's right is so incredibly difficult. But it's not about me and as I think about why I was crying, I'm left wondering what it looks like to have it not be about me. What does that even mean and can it help me try and sort out the right and wrong in raising Cale?

Some things are way beyond my understanding

2010-01-05T13:14:00.001-08:00

Christmas came and went. My parents' beloved pet, Roxie, escaped from our house on Christmas day and after hours of searching for her, we learned she had been hit by a car. Losing a pet on Christmas kind of takes the joy out of things. New Year's also came and went. Alex and I made it 'til midnight but once we toasted our glass of sparkling cider we almost had to drag each other up the stairs and boost one another into bed. My body is not made for staying up until midnight. We now begin 2010 not much differently than we ended 2009. Life keeps rolling along and I suppose we're just hitching a ride.

I truly do have more joy in my life than the prior paragraph may lead you to believe, but the course of some recent events has kicked me in the shins and made me realize that this world is a crappy place to live and some day, and only until then, will I be able to live in complete peace, void of any and all suffering. The birth of a new baby girl makes me question yet again why suffering is allowed and what sort of plans God has for the suffering He allows us to go through.

My friend's sister and her husband gave birth to a baby girl on December 23rd. After from what I understand was a healthy and normal pregnancy, this baby girl was delivered and not breathing. Rushed to the NICU with her parents only allowed a glance at their new, precious baby girl, doctors determined that she could not breathe on her own and was unresponsive to anything going on around her. This baby girl can not suck, move her arms or legs, and possibly not even be able to see. Full-term and with what seemed like no complications during her pregnancy, why is this happening? Doctors believe the baby girl, Lydia, was deprived of oxygen at some point which lead to significant brain damage. The parents have had to make incredibly difficult decisions, one being whether to let their baby live or to let her go be with her Father in Heaven. So far they have chosen for the doctors to do everything they can to let her live. I know of two surgeries she's already had to undergo and who knows how many more could be to follow.

My heart just breaks for these new parents. Here they were, spending nine months anticipating the arrival of their first child, getting excited and preparing the nursery. Waiting during those last few days in complete euphoria of knowing they will soon get to meet the baby they have been waiting so patiently for. They were probably getting excited to be able to bring her home in time for Christmas. What a perfect Christmas present! But now, days into the New Year and Lydia is in the hospital, tubes and wires connected all over her body, helpless. Her parents did not get to bring her home for Christmas and not only that, but the child they had dreamed of is not the child they got.

"Dreaming New Dreams" is the title of my blog and it was for this very reason I decided to name it that. Alex and I were forced to dream new and different dreams after Cale was born and we realized he wasn't the normal baby boy we thought we were going to have. Our situation and the situation my friend's sister and brother-in-law are going through are completely different and I don't dare try to compare our experience to theirs, but I do know how they are feeling at least on some level. The fear, the shock, the "why us", the disbelief that this is actually happening are things I definitely experienced and assume they must be, too. However, I believe God protected my heart during Cale's birth and the two months he spent in the hospital, because I look back at those days and wonder how on earth I got through them without being in tears every single day. I was even able to smile and be joyful. I know it was God protecting my heart because I should have been a complete wreck. Don't get me wrong, there were days when I was and those days were really tough, but God was definitely looking out for me. I pray He is doing the same for this family.

The verse that has always come to mind, even when I was driving home after Cale was diagnosed with cerebral palsy, is Jeremiah 29:11, "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." I believe this verse applies to us all, even to Cale and baby Lydia. God has great plans for the both of them and will use them to help bring glory to His name.

Please pray for Lydia and for her parents. I can't imagine the fear in their hearts but I do know we have a great God that is capable of great things.

"It's the most wonderful time of the year..."

2009-12-21T14:04:00.000-08:00

Life these days has been busy, busy, busy! I thought Cale starting preschool would slow things down a bit but it has done the complete opposite and sped things up! Instead of relishing in the five hours he's gone during the week, my mind is flooded with the errands I should be running, the bathrooms that need cleaning, or the floors that need scrubbing. I know I should be relaxing with Riley and enjoying her but instead I find myself running around like a chicken with my head cut off. Perhaps after we have adjusted to this new schedule I will learn how to manage my time a bit better.

Cale has recently started doing a few new things that are completely adorable! During dinnertime he patiently waits with his hands folded and his head bowed until all of us have sat down and prayed. It is too cute! And being that it is Christmas time and the masses of people are out and about shopping, traffic has been terrible! I literally cringe when I realize I have to brave the roads and run an errand. Apparently Cale doesn't like the traffic, either; he signs the word "go" when we have to sit in traffic for too long and just this morning, after we had sat behind someone at the ATM machine for far too long, Cale frowned his lip and waved his hand at the car in front of us. Too funny! Even though he can't vocalize any words yet, we are finally at a point where we can pretty effectively carry on a conversation with him. I have yet to finalize a signing chart for his preschool teacher but he probably has over thirty signs he uses without us having to prompt him. We have only seen a glimpse of his frustration of not being able to vocalize his exact needs and for that I am very grateful. Cale is one of the most patient, understanding, and forgiving people I know. I also realized today that I haven't cried about Cale being different in a long time. In fact, I don't remember the last time I cried. The last emotion I recall having when thinking about our circumstances was pure thankfulness. Cale continues to make me a better person and I am so blessed to be his mother. I honestly would not change him for the world. God wasn't messing around when he made Cale. :)

Riley is now seventeen months old and keeps me on my toes every second! She is hilarious and makes me laugh until my belly hurts. One of her new activities is to slide like a ROCKET on her stomach down our stairs. (We have a set of fourteen stairs and so this is quite the show) It used to scare me tremendously but I have since gotten used to it and so now I just think it's funny. She has adopted most of Cale's signs and I think they have even created a few of their own to talk about Alex and me behind our backs. :) Her favorite sign is "chicken" because it involves "pecking" your hand like a chicken would peck the ground. She involves sound effects and all. She loves her brother and as much as I pray that she will stay a mommy's girl forever, she is slowly becoming partial to her father. The only way I can comfort myself with this realization is knowing she will have a great relationship with Alex, much like the one I have with my dad, and also thanking the Lord for providing her with a father. Watching her get so excited for him to get home from work is quite cute.

Christmas is only four days away and I can hardly believe it. My parents are coming to our house this year and I am excited to make Jesus a birthday cake on Christmas Eve and for homemade cinnamon roles on Christmas morning. This truly is one of the most wonderful times of the year...

Snow blobs, backpacks, and girl time!

2009-12-15T13:16:00.000-08:00

*Sigh* I've made it through two full week of Cale going to preschool and let me just tell you, I AM LOVING IT! Who knew how easy things would be with just ONE child? Going to the grocery store, the mall, INSIDE of a coffee shop rather than having to use the drive-up are just a few of the luxuries I've been able to enjoy during the two-and-a-half hours that Cale is learning away. I have soaked up every minute that I've been able to be alone with Riley, because unlike Cale, she hasn't had much one-on-one time with us. She is at such a fun age and I've been reminded lately through friends and other different circumstances that although my kids, at this age, make me want to rip my hair out at any given moment and start screaming out the windows, this time truly is precious and someday I will want these days back again. With that thinking I believe I have truly been able to enjoy my kids more while Alex is at work. I previously would stare at the clock and wait until lunchtime when he would come home for a few minutes to grab a bite to eat, and then after he left I would stare at the clock until it was time for naps, and then HALLELUJAH! Dad came home from work!!! Now, though, I have started to miss my kids while they nap and when we put them down for bed at night, I can't wait to wake up in the morning and see their precious faces. Weird, I know.

Today the kids and I spent a good twenty minutes getting ready to have our first play day in the snow! Without too much crying about why we had to wear snowsuits and gloves we finally made it into our backyard, and the white winter wonderland that was just waiting for little people to make a mess of things lay perfectly still before us. That's how I pictured it in my mind anyway. First step out the door and both Cale and Riley started to cry. "Okay, just act like a complete goofball so they know it's supposed to be fun and eventually they'll come around, right?" So I'm out there flopping around in the snow, making snowmen, throwing snowballs at them and...NOTHING. Beneath their hats I could just see two little people staring at me as if I'd lost my mind. Cale couldn't walk because his boots were a little too big and chunky and I'm pretty sure Riley thought she might step into a big crevasse if she put one inch of her foot on the snow. I managed to keep their crying at bay while I put them both in the sled and drug them around our yard for a few times. I caught Cale smiling once so I know he had a little bit of fun but Riley kept a straight face the entire time. I even think I saw her raise an eyebrow at me as if saying, "Mom's lost her mind if she thinks I am going to have any fun at all." Soooo, perhaps they just need a little more time to adjust to the fact that snow is indeed one of the best and most fun things about winter. As for me, my dream of watching my kids make snow angels and try to stick their tongue to something metal will have to wait for another day...

On a side note, today is my dad's birthday!!! If being a parent myself has made me realize anything, it's been how great of parents I had while I was growing up. I honestly could not have dreamed up a better dad. I attribute me choosing such a great husband because of how great my dad is. Seriously, I love him so much and I just wish we lived closer so we could see one another more often. If you're reading this, Dad...HAPPY BIRTHDAY! I love you!

I hope everyone is getting close to completing their Christmas shopping...it's CRAZY out there!!!

First Day of School

2009-12-03T14:50:00.000-08:00

When I first began thinking about having children, and even before that, I never put much weight into the concept of "preschool". I honestly thought preschool was just another term for daycare. After having Cale and making the choice to be a stay-at-home mom, I figured he could learn whatever he would at preschool better at home, with me. If left up to me, Cale would not go to preschool. But once we learned Cale would face great challenges developmentally, school flew off my radar. It was my desire to keep Cale locked in a box, safe at home, where the cruelty of other kids could never touch him. I didn't even know what his options for schooling were, anyway. I figured it best to just never really even think about it.

About a year ago, though, the idea of preschool was brought up to me by someone who follows Cale closely through the Child Development Center. From our conversation about preschool, it would be a matter of "when" and not "if" he would attend. Once he turned three, she said, he would be eligible to start. Six months later we started the necessary paperwork but I still wasn't soaking in the reality that he would, one day, go to preschool.

Last month we had two meetings at Jefferson School where Cale would attend. They put him through a series of tests to determine where his strengths and weaknesses were so that they knew how to better serve him. I was becoming more and more comfortable with this idea and began to understand that these people were Cale's allies and that preschool would be of great benefit to him.

Cale turned three last Sunday and today we had our last and final meeting at Cale's school. We developed a plan and a set of goals for his teacher to work towards. He will get speech, physical, and occupational therapy at the school. He will be in a classroom with both normal and "not normal" developing children. His classroom has a pet bunny, lots of different centers such as writing, drama, sensory, art, and reading. It was bright and cheerful and it immediately made me feel at ease when I walked through the door. "Cale is going to LOVE this!" I thought. Right now there is only one other little boy in the class but they expect to get more children soon, but never exceeding twelve. This means lots of one-on-one time for my little boy which I am thrilled about!

After talking a little bit with his soon-to-be teacher she asked if we had any more questions. Naturally, I asked when Cale would start, thinking that we had originally planned for sometime in January after the craziness of the holidays had passed. She asked if he could start as soon as next week. "Next week!" I thought. I obviously was not as comfortable with this idea as I thought because I immediately started to cry. I don't really know the reason behind the tears other than I'm just amazed at how fast kids grow up. I also can't really imagine a chunk out of the day when I'm not with him. For three years I've spent every moment with him and have known exactly what he's done. I've been right there for EVERYTHING and it makes me sad knowing that if he does something well or if he learns a skill for the very first time that I won't be there to clap for him and cheer him on. I suppose that is what will be the hardest thing for me to accept when I drop him off and drive away.

On the other hand, though, he will be learning things that I can't teach him. He will undoubtedly become more independent and maybe, for the first time, I will get to experience the joy Alex does when Cale gets excited to see ME when I pick him up from school! He will make friends and be able to show me what he's learned at the end of each day. I'm excited for that. I will also get a little break during the day and be able to spend some one-on-one time with Riley; something she's never gotten whereas Cale had that for the first twenty months of his life. A little mother-daughter bonding time will be good for my soul.

Cale's first day of school is Tuesday, which means I only have a few days to go school shopping for him. First thing on my list: a backpack! Come on, how cute is Cale going to be with a little backpack strapped to his shoulders?

My Angel

2009-11-30T06:50:00.000-08:00

Church was over, the kids were fed, and it was finally my time to go to the gym while our babies slept soundly in their beds for naptime. I love Sundays for this very moment.

Rather than listen to my iPod during my work out, I decided to try reading instead, so I picked up a copy of "Guidepost" that had obviously been flipped through by many people before me because the cover was torn off and I'm pretty sure several of the pages were missing. I decided to give it a try anyway. For those of you who have never heard of Guidepost Magazine, it is very similar to Readers Digest although it is focused on stories of faith and Christ. Today, maybe this is exactly what I need.

I spent about twenty minutes reading heartwarming stories focused around Christmas time and what the spirit of Christmas is really about. These stories made me feel good but it wasn't until I reached page 56 that my heart was truly engaged in the words that were printed on the page. This particular story was about a boy named Josh. Josh had Downs Syndrome and was in the seventh grade. During his schooling, he never went anywhere without his aide. She was there with him during gym class, art, lunch time, and even on the bus ride home. Josh was getting especially excited for a particular Christmas choir concert that was coming up. He worked with a sepearate tutor for many hours that helped prepare Josh to be able to sing on the risers with all of the other students - alone, without his aide. This would be the first major event Josh would be without someone right by his side to help him if he needed it. When it came time for the concert, Josh was very excited. He wore a blue sweater vest and a bright red tie. His parents sat nervously in the audience, praying to God that everything would go smoothly. Josh's aide sat in front of his parents and at one point she reached back and squeezed the mother's hand and tried to calm her fears by telling her Josh was going to do great. The choir started to sing and Josh's mom slowly began to relax as she saw that no one was even noticing the boy in the middle row that was a little off key. She breathed a sigh of relief. But then it was time for the choir students to light their individual candles. It started with one student's candle and then they were supposed to light the candle to the person on their left, and so on. Josh had experssed to his family earlier that he was most excited for this part! When it came time to light Josh's candle, the boy to Josh's right was having a really hard time getting Josh's candle to light. Several awkward seconds passed and the boy got frustrated and gave up on trying to light Josh's candle. Josh's big, warm smile quickly turned to a frown. Josh's mom was in the audience holding back tears and praying, "Why this too? Why does he have to stand out as someone different in this event too? Why can't he just enjoy this one moment?" But just then, the boy on Josh's left tried to light his candle again and when he realized that Josh's candle was not going to light, the boy switched candles with him and gave his to Josh instead. Josh's smile appeared again and his mom and dad were in the audience, weeping, and thanking that boy who had given up his candle for their son. Whoever that boy was, he knew how important it was for Josh to hold a lit candle and he made it happen for Josh.

So here I am, sweating and peddling faster and faster on this bike, and tears are just pouring from my eyes. This story could be Cale someday and I can only pray that he will have friends in his life that will make a self-sacrifice to help Cale in his time of need. I'm sure I looked like an idiot, sweat pouring from my face and mixing with my tears, but today, you see, is Cale's third birthday and so I'm a little more emotional than maybe on a regular day.

My little boy is three years old now. I go back to that day when I woke up, irritated because I knew I was on bedrest and would most likely just being laying in bed all day long until Alex got home from work. I had been up since about 2:00 in the morning experiencing contractions, but given the events that had taken place a week prior, the contractions were nothing new and so I figured laying in bed was the best thing to do. Five hours later and I was wrestling with whether or not to mention to Alex that the contractions were pretty regular and getting a little stronger, about eight minutes apart. I decided not to tell him and let him go to work as planned. After all, he had sat with me in two different hospitals that always told me the same thing: stay on your medication that should hopefully stop the contractions and DON'T MOVE. I would hate to go to the hospital again and waste four more hours of our life just to hear the same thing. Alex left for work and I tried to go back to sleep. Turns out that if you don't close your eyes and just stare at the clock the entire time, sleep isn't really an option. By 9:00 in the morning the contractions are starting to feel different and are now about three minutes apart. I start to panic a little but I still don't call Alex. I wait a little longer, maybe an hour, and decide that something is definitely not right and so I call my husband at work. I tell him what's going on and he tells me to call his mom to have her bring me to the hospital. Some of you may think he's not being very supportive but you have to understand this has happened twice now and we have never gotten any different news. If something indeed had changed, he would be at the hospital in an instant. My mother-in-law came to pick me up, I hobbled downstairs, got into her car and we headed for the hospital. She insisted I use a wheelchair but I refuse. She insists some more and so I give in. I don't really have the energy to put up a good fight. She wheels me down the hall and we wait in the Labor and Delivery Unit for what seems like an hour while they get a room ready for me. The contractions are annoying, not really painful, but we sat outside the nursery and so looking at all of the newborn babies helped keep my mind off of my body and all that was going on. My room was finally ready and they put me on monitors to keep track of my contractions and my baby's heart rate. At this point I am starting to get scared and so my mother-in-law leaves to go down to the gift shop and brings me back a stuffed bear and a few magazines. Keep in mind, I have no idea that having a baby today is even a possibility. I was probably the most naiive pregnant woman on the face of the planet. I try to flip through some of the magazines and then something happens that makes me shoot up in the bed and scream to the nurses that something is wrong. I didn't know until weeks afterwards what had happened right then, but I was later informed that my water had broken. At 31 weeks pregnant, there were all of a sudden a dozen people in my room rushing around and talking very fast with one another. I was scared, crying, and all I wanted was for Alex to be there to hold my hand. Luckily, my mother-in-law is very good with these kinds of situations and she had already put in a call to Alex and within a few minutes he walked through the door. I don't know if it was because I was scared or if it was due to what was happening with my body, but I became so ferociously cold that I clung to the bed rails and shook uncontrollably. I later learned Alex wasn't scared until he saw me shaking like that. A few more minutes passed and my doctor was finally there. She looked at the monitors and after briefly talking with the nurses, she looked at me and said, "We're going to have a baby today." At that moment I burst into tears. I may have been naiive but I knew that it was way too early for my baby boy to be born. I didn't even know if babies could survive being born at 31 weeks. Alex and I were both terribly frightened. Luckily, a neonatologist came in and tried to prepare me for what was about to happen. Cale's hear rate was dropping with each contraction and since he was so little, a C-section would be our only option. I had always desired a natural birth but by this time anything I had imagined was far gone out the window. She told me that he may or may not cry when he's first born but that there will be a team of specialists right there to make sure he's given any medical intervention he might need. I specifically remember her saying that babies born at 31 weeks are a "breeze". She told me not to worry, that everything was going to be fine, and at that very moment I let my grip go from the bed rail, stopped shaking, and looked at Alex and told him I wasn't scared anymore.

At 1:17 PM on November 29, 2006, Cale Alexander Burkhalter was born, weighing 3 lbs and 16 in long. My little peanut. He did indeed cry when they first pulled him from my belly and I will never forget the softness and helplessness in his voice. I saw him for a few seconds before the whisked him to the NICU and it wasn't until 36 hours later that I got to hold him for the very first time.

Today, on November 29, 2009, he's a healthy, happy, wonderfully created three year-old. Some people may look at him and see what's wrong, and no doubt there are days when I, too, focus on what is wrong with him, but today I am reminded that his life is a miracle. Ever since he entered this world he has had to fight for everything. He's experienced more challenges, I believe, in his three years of life than I ever have. And when he was diagnosed with cerebral palsy at six months of age, seeing how far he's come on his thrid birthday brings tears of joy and thankfulness to my eyes.

God is good and He made Cale perfect. In God's eyes, He sees no flaws - only perfection. And today, perfection is all I see, too.

I love you, Sweet Boy. You are my angel.

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retraction