Tuesday, March 11, 2014

Scottish Right On!

 When you have a child, your life changes.  All of your perspectives shift and your heart resides outside of you.  The transition starts slowly, carrying your new little heart close to you at all times.  The next thing you know, he's going to daycare for the first time, or crawling, or walking down the sidewalk with his lunchbox holding his daddy's hand.  And all you can think is that you want to protect this being from any harm.  Because if harm came his way, you're not sure your heart would continue beating.  And then you learn that there might be something wrong that you can't control and you can't fix by kissing or putting on a band aid.  So you do the only thing that feels right and you pray.  

Today I had the smallest taste of this and now I sit here crying.  I am crying because there are a lot of unknowns up ahead.  But I am also crying because I am so grateful for what I have been given.  And today I saw parents who, though their circumstances are more serious, were equally grateful and equally vulnerable with their precious hearts running and rolling around the waiting room. 
   
For about 7 months, Hubskie and I have been noticing small differences in little Aidanzilla, particularly regarding his left hand.  He has a lot of trouble using it and in general prefers his right hand.  Me being the obsessive mother, I googled constantly looking at milestones and what this could be indicating.  We brought it up to his doctor a few times, but because he was consistently hitting major milestones he said there was nothing to worry about.  But, let's be honest, I continued to worry.  At our last visit, the pediatrician decided to send us to Scottish Rite to see if there was something else going on.

So today Hubskie and I packed up our Zilla and headed to the most magical hospital in Dallas.  Scottish Rite gets it, well, right.  There was not a sad face in the place.  Beautiful paintings decorated the walls and mechanical contraptions hung from the ceiling.  They gave you free popcorn for filling out surveys and each person we interacted with treated us with genuine care.  The waiting rooms were covered with toys of all age levels, though you only had minutes to explore them because there was basically no wait.  If we had to be at a hospital, I'm glad it was this one.

We met with a hand doctor first who examined Zilla and moved his arms in funny ways and tested his reflexes.  After looking him over she let us know that she believed that Aidan has a very mild form of Cerebral Palsy.  At this moment I was so happy for my obsessive internet searching because I already knew this was a likely prognosis.  If I hadn't, I may have broke down crying right there in the room.  It's funny, I have learned extensively about disabilities and how Cerebral Palsy is particularly misunderstood.  Yet, here I was listening to a doctor saying it was likely that my son has this and all I could imagine was worse case scenarios.

You see, the thing with cerebral palsy is that no two cases are the same.  It ranges from minor muscle and nerve abnormalities to intellectual and major physical impacts.  The doctor reiterated that Aidan's case was one of the most mild she has seen.  Hearing this was comforting, but there was still a part of me that wondered where did it go wrong?  Was it that deli meat I ate that one time during pregnancy, did I workout too much near the end, was it that smokey dance hall I went to?  Did delivery go too fast?  I wish I could say I was able to not ruminate on these things, but the thoughts kept coming.  And then I looked over at Zilla, who was walking holding his Daddy's hand just like he always does and I knew it would be okay.  Because he is resilient and so loved.  The only thing this diagnosis does is give us the opportunity to have access to early childhood intervention services and therapy.

There may be difficulties ahead.  The doctor said his condition won't worsen but we may notice new ways it is affecting him as he grows older and should be hitting other milestones.  It's hard to know the full extent of the prognosis at this age.  But it's good that it has been identified early so that he can have access to interventions now.  

The crying has been on and off today.  I managed not to cry at all while at the hospital, but tears came the moment I was in my car.  From there I've cried as emails and texts from my family sending their love and encouragement have come in.  Even his daycare lady sent me encouragement in her own quirky way by sending me a text saying that she thinks he will make an excellent soccer player because he is great at kicking the soccer ball there.  I had told her earlier the doctor told me as he grows we'll learn more and that he may find it frustrating when his hand isn't cooperating when he's trying to play sports.  I know that there are parents who are struggling with so much more and I know that I will be praying for them a little extra.  Having even a small glimpse into the scary world of holding your child's hand through an illness makes me even more grateful for all of the amazing supports we have in our God, each other, our family, and our friends.