Monday, August 18, 2014

Reality isn't always ideal...

As our family is growing, we are also outgrowing our house.  But like many families in our situation, it is difficult to sell our house and get a new mortgage to accommodate our needs, at this time.  I am grateful for the years of experience and growth to get us through this obstacle.  Nothing in the last 5.5 years has been by the book or as planned.  As our journey has progressed, we have learned to make pavement out of gravel and to see flowers in a field of weeds.  So as we look around our house at all the things that just aren't working anymore, we are brainstorming ways to make the best of it.  Last week, a friend of ours showed up at our door and started tearing the wall apart in our kitchen to bring the plumbing and electrical up from the basement so that we could move our washer and dryer to the main level.  A wish on my long list for many years.  He made it happen and happen it did!  Laundry was a mountainous task for me each week, because I don't just have a Sunday laundry day…I do laundry daily.  Carter's clothes must be changed many times a day and so do his blankets that get soiled quickly.  I was climbing two stories every time I did laundry.  This huge change fueled us to keep going.  Stairs have become the worst feature in our home.  Our only bathroom is on the second floor as well as all of the bedrooms, so no matter how we refigure our house, we have to carry Carter upstairs for baths.  As lovely as his hospital bed is, it also became an issue quickly once he learned to pull to stand and bang his head on hard things.  We had the DME company add padding to the panels of his bed, but it's too thin for the type of rocking and head banging our little hercules does.  So we have had Carter sleeping on the couch or padding on the floor in our living room for quite some time now.  And my husband has been sleeping on the long end of the couch to be near Carter, in case he refluxes or struggles.  If the hospital bed is in the dining room, we can use it for changing Carter and he can sleep in it once he is fast asleep.  We have thought about all different ways we could add on to our house or turn certain areas in to something else, but we have finally caved in and decided…no renovations and no more procrastinating.  We have battled for years to keep Carter's life and our lives as "normal" as possible, even when we understand that our lives our anything but "normal".  I am the type of person who likes things to be in their rightful places, so the idea of turning our beautiful dining room into a bedroom without privacy and a door, has been daunting.  But this is where we are at this time.  It makes sense and is a viable option.  All of our other dreams are far from reach, unrealistic and unpractical.  So here we are.  As I think about moving Carter's hospital bed to our dining room and putting his clothes in the coat closet, I feel my heart sink and my emotions in over drive.  As easy as it would be to drop to my knees and cry, I know that I can't.  it has to be done.  As much as I love to walk into Carter's bedroom and see all of his precious art work, U of M souvenirs and gifts from over the years, I know that a bedroom is silly in the big picture.  Carter doesn't even use his bedroom.  We wouldn't have him sleep alone in his bedroom because of the risk he will reflux and aspirate.  He doesn't have a collection of his favorite toys to put in his room.  He doesn't even step foot in there these days.  The realization of THOSE things is what kills me.  Even after 5.5 years of knowing that my child has special needs, it's moment like this that consume me.  It's a small piece of "normal" that I held on to for dear life all along.  Carter can have adorable outfits, wall hangings, colors on the walls that make us think of him, a car track rug and Pensacola memories from when he was a baby to adorn the furniture.  But all of those things are for us, not for Carter's reality.  He could care less about most of those things.  So when the tough choices are in front of us to rearrange those things in to something that makes sense, I must let go of those small pieces of sentiment.  I loved the idea of having a place we called Carter's…a place I could walk in to and pretend that Carter was just like any other kid.  It was a facade for my sanity.  A new plan has been cultivated, ready or not.  We will paint over the blue walls in a color that our oldest daughter chooses and move her day bed where Carter's hospital bed used to be.  We will let her organize all of her art supplies and toys in a space she can call her own.  Our house will transform this weekend in to something that is long over due.  It will become a little more handicap accessible and suit Carter's needs at last.  As hard as I try to type this out and not cry, there are tears pouring from my eyes.  I sort of feel how I did a few years ago when I was facing a diagnosis and feeding tube…and all of my hopes that we would find a doctor or answer that would tell us that Carter would be fine and that this was all just a bad dream, vanished.  There are moments in our life that change everything and turn what was into what is.  There's no turning back.  I know that the time in this house will come to an end when the time is right and we will move to a house that is perfect and Carter will again have his own bedroom where there is no stairs to battle.  I know that I will look back and chuckle as I remember my inner struggles with this temporary plan.  But right now, I must be strong and let it be.

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