Friday, January 28, 2011

A better start to hopefully a better day!

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

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

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

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

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

Here's hoping for more days like yesterday.

Wednesday, January 26, 2011

Blah!

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

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

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

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

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

Friday, January 21, 2011

Five Whole Days...

...with no naps.


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


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

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

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

Tuesday, January 18, 2011

Me! Compassionate???

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

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

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

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

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

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

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

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

Thursday, January 13, 2011

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

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

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

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


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


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

Tuesday, January 4, 2011

**retraction**

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

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

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

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

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

Monday, January 3, 2011

Cheers!

We survived Christmas Eve!

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

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

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

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

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

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

Cheers!