post ohio

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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!

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

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

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

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.

1. 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.
2. 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.  
3. 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

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

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

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

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.