Sunday, February 28, 2016

Piece by Piece

As a young child I used to get caught up into the anxious game of “what ifs.” It was an internal clashing of scenarios that may never happen, but raced in my tiny mind until I nearly panicked; “what if the house caught fire, what if a tornado came, what if we got into a car accident, what if my parents were to die?” My mother would coddle me and promise me that we can only take life a day at a time, sometimes only a breath at a time, and as life unfolded sometimes painfully, I came to realize just this.  As an adult my mother’s words became a constant ringing in my ear, keeping me grounded as life began giving us more lemons than we had time to make lemonade.  It was either take life as it comes piece by piece, or fall apart just as quickly.

As a young child I also had dreams, beautiful dreams.  I wanted to be swept off my feet by my knight and shining armor, have as many children as I could humanly hold, have a respectable career, and live happily ever after.  The day I met my husband, I knew we would build just that, and for the most part we did, even if it were a rougher version of the original story I wrote and rewrote time after time growing up.  It was our kind of perfect.

Over time we would find out our perfect had many fault lines, just like hand blown glass there were weaknesses and frailties that would cause our beautiful to crack.  We did all we could to stop our beautiful picture from crumbling completely.  This became nearly impossible as we found out not one, but two of our babies had a progressive and degenerative life limiting disease with no cure. 

Our play days turned to hospital stays, and our play room turned into a make shift hospital room.  One by one the kids needed more and more interventions, and we watched as the life we planned turn into something we never could have imagined.  We tried our best to keep everything as normal as possible, to maximize and maintain the life we had planned for them.  We refused to crumble, we refused to let the cracks separate us.   We trusted God to take the original picture piece by piece and create a new picture, though different, just as beautiful, and He did.

The foundation beneath us became stronger, and thankfully so, because no sooner did we come out from underneath the quake of the storm did I become sick as well, just like that, quick like the rain on a sunny day, and just as unexpected.  The same disease that my sweet babies battled day by day, now effected my body, piece by piece. 

When the children first became ill, I used to lay my head upon them every night and beg my night time prayers.  I would plead with God to take their sickness from them and lay it onto me.  Although I know they are not healed, and our God does not work on barters, I thank Him every single day that they are up and running and I am stuck in bed.  It feels like a partially answered prayer, even if it isn’t the way things work, believing so brings me solace.

The sicker I have become the harder it has become to keep our beautiful picture whole.  As I sleep the days away with children’s laughter echoing throughout my slumber, my heart cries for the days that I am losing.  All of the missed; bedtime stories, baseball games, homework nights, family dinners, playdates, all the things I used to be the heart of; there are days in which I feel like I am slowly disappearing from the picture all together, piece by piece. 

When I first became ill my body was slowly losing processes I never had to really think about before; eating, breathing, seeing clearly, using the bathroom, sleeping.  I started having trouble taking care of myself in ways I never thought I would.  As a twelve year old child dreaming of my future, I certainly never imagined I would need assistance with bathing at only thirty years old, but I do.  Now I have begun facing things that were not on my radar even a year ago, and I have yet to be able to turn the ugly truth into anything easy enough to even look at.

Recently, I started losing pieces of myself I thought would always be mine, until the very day I left this Earth. It started out subtle, a few memories here or there, a few missed words, things that could be chocked up to stress, illness, nutrition, or anything else I was going through.  Then it became a little more frequent, a little more intense; a few missed hours, forgotten names, momentarily forgetting how to speak.  That quickly turned into visual discrepancies, periods of my eyes not tracking, large lapses in memory, difficulty walking, unintelligible speech, answering inappropriately, delayed processing time, among other issues.

These moments used to take just a little bit of me, and then give it back as quickly as it left.  Now these moments have started taking who I am piece by piece.  I am left with more and more of the neurological deficits and less and less of the mind I used to have.  I am suffering from Stroke Like Episodes, which can occur in Mitochondrial Disease.  I can no longer drive for fear I may have an episode while driving.  Even if I didn’t have an actual stroke, my mind now has trouble processing information it has known for years, like what to do at a stop sign.  It doesn’t always happen, but the fact that it happens at all is not safe. 

I have begun to have trouble doing the things I love.  It takes my mind so long at times to remember what to do with my camera before taking a shot, that I have often missed my opportunity.  Playing music has become difficult as both reading music, finger placement, and keeping a beat has become nearly an impossible feat.  Even typing is sometimes difficult.  My mind knows what it wants to say, but it becomes difficult at times to know what button I need to push to make that letter happen.  I am watching all of the things I love slip away piece by piece.


I long outgrew the game of “what ifs,” and I am glad I did.  I fully trust God with the suffering I endure on this side of Heaven.  Losing myself neurologically piece by piece physically hurts the least of all of my afflictions, but emotionally it hurts the most.  I will continue to take this life a breath at a time, knowing it’s the only way.  I know He can take anything and make it beautiful and I know He will.  



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