in other news

I've been hesitant to write about Cale's health as of late, mainly because I don't want to jinx anything, but I figure it's time to put something positive and hopeful out there seeing that I am generally a very positive and hopeful person, despite the main content of my blog.  I tend to put voice to the thoughts and emotions I rarely let anyone see or know about in this space as a way of 'getting it out'.  Sometimes my husband and closest friends have no idea what I'm thinking until they read this, if they read this, and so one might assume I'm perpetually sad or cynical but nothing could be further from the truth.  I am joyful, happy, always seeing my cup as half full, and more often content rather than discontent.  Surprised?

So here's to voicing the positive and hopefulness of my life as of late.

Cale is doing, <gulp>, well.  I feel like I need to whisper those words so as not to jinx anything.  Alex and I have exchanged those words only a handful of times because we know that like with most things about Cale, it could change in a matter of minutes.  BUT, ever since we switched Cale over to nighttime feedings he has seemed more comfortable throughout the day, more able to play without pain, and is without a doubt more active than before.  He spends most of his day playing with his sister rather than laying on the floor and just seems plain happy.  It's been a joy to experience this change in him and even though having him tube fed during the night isn't our ideal, it's working for him and we're just rolling with it.  I've been able to stop myself from worrying about the future and how we're going to get rid of that stupid pump and it's truly let me relax and remain relatively stress free.  It's been amazing.

We've also seen an improvement in his oral eating and I love having to tell him to stay out of the pantry!  He loves pretzels and will sneak them all day long if I'm not watchful.  Who knew I would have to tell him 'no' to food?!

Also, I may have forgot to mention a rather large change that happened in our lives a few months ago.  My dad found himself looking for a new job after an unexpected and sudden change with his employer of over twenty years.  His job search landed him a new and better position...in Texas!  So after the quick sale of my childhood home and lots of work on my mom's part they up and moved to Beaumont, TX.  I was initially very sad that they would be so far away and seemingly not as involved in the growing up of my children's lives, but I've since regained a tremendous amount of peace with their move and am happy for their new adventure.  Texas will not be forever, or so I tell them.

With that said and out of the way, I am surprising Cale with a trip to see them over Memorial Day weekend.  For those of you that know Cale you know that he absolutely loves airplanes and airports, almost as much as he loves my parents, and he asks about going to Texas to see them on a near regular basis.  Alex has been traveling quite a bit for work over the last few months which has left me alone with the kids more often than I would like, and so I am so excited for the break and change of pace.  I initially was going to fly down there by myself and have a true mini vacation, but something inside of me made me want to bring Cale along for the journey.  I am very much looking forward to having some one-on-one time with my favorite oldest boy and surprising him with this trip is going to be priceless!  I haven't figured out the details of how I'm going to share the news with him but I do know that he won't know until a day or two before we leave because otherwise he will drive me CRAZY!  He tends to ask the same question over and over and over and over again, and I just know he would ask me how long until we leave at least a hundred times a day.  It's best that we just leave it as a surprise. :)  I can't wait to see my parents again and see their new life.

Riley and Cash often get neglected in this space and I tend to believe no news is good news, but I realize some of you may wonder what's going on with them.  Cash is going to be ten months old tomorrow and the days are ticking by until Riley will turn four in July.  I can't believe how fast the time is going!  They are best pals and no one can make Cash smile like Riley can.  Every afternoon, without fail, Riley will hear Cash stirring after waking up from his nap and she will go into his room, shut the door, and I will hear squeals and giggles for the next half hour.  I would love to be a fly on the wall and see what they do in there!  Cash remains incredibly laid back and is one of the happiest babies I know while Riley gives me more of a run for my money.  She's opinionated, dramatic, and thinks she's wiser far beyond her years but deep down has a very tender heart.  She's shy in a large group of kids but definitely has her BFF's.  She loves to learn and continues to be one of Cale's strongest advocates.  She knows all of his signs and often interprets to us what he's saying when we can't figure it out!  I can only hope Cash picks up on sign language as quickly as she did.  With these three kids our family is complete, and even though life is incredibly busy and chaotic I wouldn't change a thing.

I really wouldn't.

Life is good.

eeny meeny miny mo

For those of you who read my previous post you know that we are currently in the middle of registering Cale for kindergarten.  For many moms this process is mostly exciting with a few drops of bittersweet mixed in.  For me, the entire month of April has been filled with anxiety over which school to choose and whether of not we should push for Cale to be as involved in a regular classroom as possible.  I've lost countless hours of sleep and have generally felt like I'm living in some sort of cruel nightmare.

Until yesterday.

We had a meeting at the school Cale was originally "assigned" to, Hawthorne Elementary.  I walked in and immediately noticed the uncleanliness, the disarray of library books on the shelves, and the dated look of this school.  Its library also had a pet rat.  Chief Charlo, the school I so badly want all of my children to go to, is a relatively new school and so its appearance is much more attractive than what I was witnessing right now.  And this school had no rat.  I kept telling myself to keep an open mind but I knew that even before talking with anyone I had already made up my mind.

I am not letting my son go to this school.


We finally made our way into the room where a team of teachers waited eagerly to meet one of their possible future students.  I forced a smile on my face and introduced my family to each unfamiliar person.  Cale was extremely nervous and suspiciously studied each person and signed to me that they were "different" from his teachers at preschool.  Yes, these teachers are different.  They went on to give us a brief summary of what a day in kindergarten might look like for Cale.  They thought it would probably be best to make the extended resource room his "home base" and then as he became more at ease with that to slowly integrate him in the regular classroom as much as he felt comfortable.  As soon as they pitched this idea to me I immediately shut down.  Without saying it, I had made up my mind.  Cale will not be going to this school.

We left the meeting with the understanding that we would try and reach a decision within the next couple of weeks, even though I had already chosen the school for Cale; the best school, Chief Charlo.

On the drive home, however, I felt an unexplainable uneasiness.  I knew I didn't want Cale going to that school but for some reason the idea of Cale going to Chief Charlo wasn't settling well with me either.  Something inside me kept tugging me back to that extended resource room where we had just met.  My thoughts kept wandering back to the bubbly, young-faced teacher who had showed such genuine care for Cale and his future education.  I knew the moment I first saw this young lady that if I engaged in too much of a meaningful conversation with her that she would be one of those people I just couldn't help but fall in love with.  So I didn't.  I simply sat there and took in the information she was giving us.  Miss Liz was her name and she warmly pleaded for us to choose her as Cale's teacher.

That night Alex and I sat down together after putting our kids to bed and discussed the happenings of our day.  The longer I sat there talking with him the more I realized that in the process of choosing the best school for Cale that I was really just interested in choosing the best school for me.  What school is going to make me feel better?  What school would hide the embarrassment I was feeling about Cale not being "normal" enough to be in a regular classroom?  I realized how selfish I had been in pushing Cale to be in a regular classroom.  Chief Charlo was telling us that mainstreaming him would not be a problem where as Hawthorne cautioned us by placing him in the extended resource room.  My pride and my own insecurities are what I was truly placing first, not Cale.

Once again I'm experiencing the death of a dream.  Once again I'm seeing how change spotlights Cale's differences.  But for some reason, and I'm sure only by God's provision and grace, I am at peace.  It's okay that we won't be attending 'Kindergarten Roundup" with all of the other excited parents.  It's okay that Cale will spend his first year of kindergarten in a special education classroom.

It's okay.

It's really okay.

And not only is it okay, but it is what's best. 

I've finally come to the realization that what I may think is best for Cale is really just a mask hiding what I think is best for me.  No parent wants to readily admit that their child is better suited for a special resource
room with limited access into a regular classroom with other normal kids.  Or at least I should I wasn't ready to admit that.  I've tried my hardest to let Cale have normal childhood experiences, which I think is a great thing and will benefit him positively throughout his life, but there comes a time when I need to stop pushing for 'normal' and let Cale be who he is and trust that he will succeed no matter what, just as he is.

And I truly believe that.  Cale will succeed no matter what.  Not because of what I've done or the decisions we've made, but because Cale is smart, driven, exceptionally persistent, and one of the hardest workers I've ever known.  He will without a doubt endear himself to his future teachers and excel at whatever learning plan is set before him.

I talked with Cale's current preschool teacher this morning and she asked me if we had made a decision yet about which school we've chosen.  I told her I thought we were leaning towards Hawthorne, which is the first verbal commitment I've made towards choosing that school and a big step for me personally.

Before having children I never gave a second thought to having to choose a school for my child.  Growing up I went to the the school that I lived closest to, simple as that.  I never thought that once having my own kids that it would be such a difficult decision, but I think I've grown a lot in this journey and learned a few important lessons in the short few weeks we've had this on our minds.

Sometimes I think it's my job to teach Cale about life, but other times I think God gave me Cale for him to teach me about life.

Maybe it's both.

Having a child with special needs sure makes life interesting and keeps me on my toes.  I've always said there is never a dull moment in our household and, oy,  has that been ringing true lately.  Some days I feel as though life is comparable to a relaxing day at the beach; sitting with my toes buried in the sand while sipping a fruity umbrella drink and getting a tan.  Life is good.  Other days, not so much.  Sometimes I feel like life has me on the course of a crashing wave, constantly beating and churning me beneath the waves, never allowing me to come up for air.  And oddly enough the days at the beach are on a fairly predictable cycle.  Change is the one determining factor in what makes the difference between a sunbathing kind of day and a drowning kind of day.

We are embarking on another season of change at the Burkhalter household and so far this whole experience has left me gasping for air: the beginning stages of transitioning Cale into kindergarten.

Let me give you a moment to let that sentence sink in.

Yes...kindergarten!


I can hardly believe my little three pound preemie is starting kindergarten next year.  When did I become old enough to have a child that old?  Eeesh.

With his last year of preschool winding down, we met with his teacher for a regularly scheduled parent teacher conference last week.  I love these conferences because it's always a time when we get to hear from his teachers how amazing our little guy is.  They seem to have all fallen in love with him over the past two and a half years and his educational circle has become a place of comfort for both Cale and me.  It's apparent they have a genuine desire for anything and everything that is in his best interest and as a parent, there is no greater feeling than having other people root for your child as much as you do.

Towards the very end of this meeting as we were wrapping things up, his teacher put a little sticky note atop of our papers that had the date and time for our official transition meeting into kindergarten.  It was set for April 26th at Hawthorne Elementary School.

Hawthorne Elementary School???


But we live a five minute walk away from Chief Charlo, the school we have been planning for all of our children attending.  Chief Charlo, the school my fellow special needs moms have given their stamp of approval.  Chief Charlo, the school that was a big deciding factor into the purchase of our house.  Chief Charlo, my dream school for my kids.

Needless to say, that little sticky note came as a complete surprise.  I fumbled through my words and asked why our transition meeting into Chief Charlo was taking place at a different school.  His teacher simply responded by saying, "because that's where he'll be going next year."  It was obvious to her then that we had no idea this was coming.  In true Erica fashion I broke into tears and we left the meeting agreeing to meet with the head of the special needs program in our school district do discuss our options.

We had that meeting earlier this week.  I was far more prepared this go around to deal with things emotionally, aka no crying.  They explained their thought process into assigning Cale to a different school other than his neighborhood school.  They did a good job of listing the pros and cons to each and I left the meeting feeling more prepared to make this decision.  We are going to try and quickly squeeze in a meeting with both principals, and hopefully maybe even observe a kindergarten class at both schools before we need to make our final decision.  I feel good about being proactive in deciding where he'll spend the next six years and when all is said and done, I can say that Alex and I did our homework, gave it our all, and then hopefully remain at peace knowing that God already knows each and every one of Cale's future teachers, and that no matter what building he's in, it's the one God has chosen in advance for him.

Aside from going back and forth between schools, we also talked about what a regular day in kindergarten might look like for Cale.  I'm ashamed to admit that this conversation is something that has burned a hole in the back of my brain from letting it sit there too long.  I've purposely avoided trying to think about what school is going to be like for him.  I remember my own thoughts and behaviors towards kids with special needs and one of my greatest fears for Cale is that he'll be treated that same way.  Kindergarten is going to expose him to a whole different world and I'm scared for his innocence and sense of worth being crushed.  My desire is to have him in a regular classroom as much as possible but I'm starting to doubt what is best.  Academically he is right there with his peers but the communication aspect of learning will without a doubt pose a huge threat to his involvement in the classroom.  I want him to feel accepted and valued and I'm so scared for how other children might treat him.

My hope is that we as parents have instilled a greater sense of self worth in him that even the occasional bully at school cannot destroy and that God would keep a constant protection around his heart.

I'm prayerful that this season of change in our lives - in his his life - will not beat us beneath the waves.  I believe God will direct us and help us in choosing the best school for him, but it's always these changes that seem to shine a spotlight on how different our lives are from our friends' lives.  Embarrassing as it is to admit this, I'm battling extreme jealousy over my friends who get to choose where their children go; some get to homeschool their kids while others get to place their kids in a Christian school.  Options for Cale's education are limited, and heading into our first year in the public school system is really making me realize how much that stinks.

Sometimes life just stinks and it doesn't seem fair.

update

I feel like a loser.  I have totally neglected this space and, truth be told, I don't think I've been in a very good place to give an update on what's been going on in our life.  I've sat down at my computer numerous times to try and write it all out but the right words just never seem to flow.  My mind has been flooded with what seems like a thousand different thoughts and emotions and trying to make sense of it all has been extremely overwhelming.  It probably doesn't help that those thoughts and emotions seem to change on a daily basis.  I think I've finally found a topic to write about that seems somewhat manageable, and that is a question I get on a near daily basis:

How is Cale doing?


I never really know how to answer that question.  My base line for how he's doing is so skewed because he's never doing well, good, or great.  We are at a place in life where I never wanted to be and even though Cale can't express his thoughts, I'm fairly certain he is sad about where we're at, too.

It's been three months since Cale's surgery and it seems as though that surgery fixed absolutely nothing.  Okay - not nothing - but the pain and discomfort with eating is still present, if not worse, and we've found ourselves taking several steps backwards in order to try and maintain his quality of life.

After much trial and error Cale is now being tube fed continuously through the night.  We have eliminated all daytime feedings, with the exception of the few bites of solid food he gets when he sits down at the table with us, but we now have to come to terms with the fact that Cale is 100% reliant on a machine to feed him and give him the nutrition he needs to grow.  That stupid pump is still an eyesore in his bedroom and I have yet to get used to seeing it beside his bed.  The good news is that he has been a tremendous trooper with everything and he tolerates being hooked up at night like a champ.  He has only turned off his pump once, which is highly amazing considering the fact that he loves anything technology, and he waits patiently for Alex to come and unhook him in the morning so that he can get out of bed.  He truly has been the one thing that has made this transition bearable.  I can't imagine how we would do this if he were defiant towards all of the changes that have had to take place.

We made the decision to eliminate his daytime feedings because he was in so much debilitating pain after each feeding.  It was getting to the point where he would spend most of the day laying on the ground because of his level of discomfort, and even though Cale has his challenges, he's never been the type of kid to be so sedate and inactive.  It was heartbreaking to see him not want to play with his sister and even more heartbreaking to see him lose such luster for life.  Going places was almost not an option and we all were becoming incredibly stir crazy.  I felt extreme guilt for keeping Riley from play dates with her friends and after speaking with his dietician, we finally made the decision to quit feeding him during the day in hopes of making him more comfortable.  This decision hasn't been a quick fix because any amount of food or liquid to hit his stomach will send him in a tizzy, so that means one goldfish cracker or one sip of water, but we have noticed the past couple of weeks that things seem to be better.  I'm able to go to the grocery store or send him off to school without incurring a bout of severe anxiety.  We've been puzzled by the fact that he seems so miserable during the day when he eats and yet he seems to tolerate "eating" at night just fine.  I've only recently conjured that he's simply just used to the discomfort and since he's laying down the entire time at night he's able to "make it through".  I do think the continuous feeding is interrupting his sleep because he's back to taking naps during the day and when I wake up in the middle of the night to feed Cash I can hear him in his bedroom rustling around or kicking his feet against the wall.  All in all, though, it has been a huge relief to know that he's getting all the nutrition he needs to grow.

Since the surgery wasn't the miraculous answer we thought it would be, we are now working on making a plan for what's next.  We have been diligent in documenting absolutely EVERYTHING that goes on in Cale's life.  If he gets a sip of water, we write it down.  If he goes to the bathroom, we write it down.  Anything and everything gets written down in the hopes that whichever kind of doctor/specialist we decide to see next, we will have the absolute best information to give them so that they can have the best chances of helping Cale.  We are also in the beginning stages of getting Cale approved for in-home nursing.  This step in our journey is almost due an entire post of its own because there are so many emotional hurdles that I've had to jump over to come to terms with this, but our goal of the nursing is to have a medically correct documentation of what life is really like for Cale.  It's one thing for me or Alex to tell a doctor what's going on, but I think it will be entirely different coming from a nurse who can observe Cale during his feedings.  Having a nurse in our home will be extremely invasive and I can't even really wrap my mind around what this will be like, but I have to remind myself that this is only temporary and it's serving as an important step in reaching our goal to make Cale's life better.

All of this is to help make his life the best that it can be and I truly believe his life can be, and will be, great.  It's just taking an awful lot to get there.

I'm not really sure I did the best at answering the question of how Cale is doing.  Aside from the pump feedings and the hassle that goes along with that, he's doing okay.  The surgery didn't accomplish what we thought it would and he isn't magically surviving off table food like some people imagine.  He's able to chew and swallow five or six bites of whatever we're eating but it's going to be a long, hard road to not only eliminate the pain that comes from eating, but also learning how to eat since that's something he hasn't been able to do during the last five and a half years of his life.  We're making progress and we just take it one day at a time.

So there it is.  An update on Cale!  Hopefully my next post can be lighter and more positive.  I can't wait to write about Cash...can you believe he is going to be nine months old in just a matter of days?!?!

the homecoming

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

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

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

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

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

That's when I broke down.

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

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

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

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

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

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

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

I feel like a nurse without the paycheck.

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

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

surgery day

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

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

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

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

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

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

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

confession

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

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

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

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

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

surgery update

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

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

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

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

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

God is good.

post ohio

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.