You Are More.

One of the worst days of my life was when Tyler was diagnosed with Schizencephaly.  I was 17 years old, pretending I understood life, but now I had a child with special needs to care for.  I sat next to my mother, Tyler in my arms, and listened to his neurologist talk about what he found on Tyler's MRI scans.  Schizencephaly.  I kept repeating in my head, Schi-zen-ce-phaly.  Over and over, trying to wrap my brain around this diagnosis.  Wait a second, he just said Tyler is missing half of his brain.  How is he alive?  What does this mean?  Will he always be this way?  Will he get worse?  Cerebral Palsy?  He will never walk or talk?  I had so many questions, but I couldn't speak.  I tried, but my throat was on fire.  I squeezed Tyler in my arms thinking he was going to die soon.  I left that office with no hope.  All his neurologist told me was worst case scenarios, and I took it straight to heart, thinking Tyler would be nothing.  A child who wouldn't speak, think, move, or know that I was even his mother.

Fast forward.

Here we are!  Living such a beautiful life full of hope, best case scenarios, and love.  I realize now that even if Tyler couldn't think or didn't know I was his mother, it wouldn't matter to me, because he's still my son and nothing in the world can change the love I have for him.  Absolutely nothing.  The issue was never the diagnosis, it was the fact that I was told my son would be nothing but a body with half a brain.  Ten years later, you see the complete opposite!  Tyler is much more than that.  His mind is beautiful and smart.  The body he was given may not work properly, but it certainly doesn't stop him from trying.  Maybe Tyler doesn't do everything the way the rest of us do, but he adapts to his surroundings and finds his own ways.  Almost everything I was told he wouldn't do or would have issues with have been wrong.

I remember walking into that Neurology office talking about new discoveries we've made with Tyler.  The time I realized Tyler had an attention span and was capable of memorizing was when his love for movies appeared. Chicken Little was something he watched often and he laughed at the exact appropriate times, every single time.  We noticed before the funny parts came, he would anticipate them with laughter and look to us for a reaction.  The day we shared this information is the day his doctor told me to accept Tyler for who he is, disability and all.  How it was okay he couldn't do these things, because Tyler was still special in his own way.  I'd be lying if I said his words didn't make feel a little broken, again.

I can't speak for everyone.  In all honesty, our Neurologist wasn't a bad guy and I believe he thought he was doing the right thing.  I was told to accept everything the way that it is, but something about that has never sit well with me.  We embrace Schizencephaly, but we don't accept it.  I embrace Tyler being fed through a g-tube, but I don't have to accept him living off formula for the rest of his life.  I embrace the fact that he may one day need seizure medication, but I didn't accept it the day his Neurologist wanted him to start taking these medications long before he showed any signs of seizure activity.  I embrace his immobility, but I don't accept letting him do nothing with his life because he can't use his body.  I often wonder about the outcome of doctor's changing their approaches while speaking to patients/parents.  How far would a little bit of hope take these parents and their children?

Schizencephaly is apart of this family and always will be, but I'll be damned if it's the only thing people see or talk about when Tyler enters a room.  Tyler, you are more!  Much more than anyone ever thought you would be.  You are more than this diagnosis!  On Schizencephaly Awareness Day, I celebrate YOU!  The mountains you climb, your milestones, your life, and your beautiful brain.  There's a lot I've questioned about this life, but you and your ability to shine has never been one of them.

"Pain is real. But so is hope."