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?!?!