Tuesday, January 1, 2013

Sometimes I wonder

It's not often that I let my mind go there but sometimes, when I least expect it... it does.  It's never over the big things that one might expect but over the little things that I often wonder if I am the only one who thinks of these things.

As I tucked Parker into bed tonight, I did - as I always do, rubbed my hand on the top of his head as I leaned in to kiss him goodnight.  I do this every night, so why tonight it made my mind wander off and wonder... I don't know.  But it did.  And I wondered ... If Parker didn't have Fragile X and was a "typical" 13 year old boy - is this the haircut he would have... or want?  And that started the snowball down the hill.

I looked at him with tears in my eyes as he giggled at the Ocotonauts on his TV and wondered:
Would he look the same, not just the hair - but all of him, his face, his smile, his vividly blue eyes?
Would he love sports?  Would he still want to do football picks each Sunday with his mom?
Would he still love to play basketball?
Who would his friends be?
Would he have a girlfriend?
Would he struggle in school?
Would he be a drummer?
Would he love animals?
What would he watch on tv?
What kind of music would he listen to?
Would he be respectful?
Would I let him on Facebook?
Would he be doing this snapchat thing I keep seeing his friends post about?
Would he still think inflatables were cool?
How would he dress?

Would he like his hair like this or would it be longer?

Would he still love his Momma as unconditionally and whole heartedly as he does now?  And really, does he now?  His eyes tell me yes.  His eyes tell me he trusts and needs me.  His eyes tell me he loves me.  And I'm extremely blessed that he can now use his words to tell me himself that he loves me.  But in this world of ours where so many decisions are made for him, it's honestly a guess most of the time.  It was completely a guess until a few years ago when he could really communicate.  But still now, his life is often a series of choices - predetermined choices with acceptable answers.  Which is necessary for our life but does it mean it is what he really wants?  And how do I really know - that he loves me unconditionally?  What if his eyes aren't saying "I love and trust you" but are saying "You are screwing me up?"  I don't.  Not completely anyway.

What I know is that now and then I wonder.  Usually I wonder about our reality.  What the next day will bring? What new meds might be available for us? What can I do to help prepare him for his future? What can I do to make him happy?  What can I do to show him how much he is loved?  But now and then, I wonder about what would have been had we not been a part of this fragile world.

I believe he is happy.  I believe he knows he is loved.  I believe he loves his Momma unconditionally.

That hair though... I just don't know.

To learn more about Fragile X Syndrome please visit the National Fragile X Foundation's website.
*Fragile X is the leading cause of inherited intellectual disability and the leading known genetic cause of Autism.

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