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."

Cerebral Palsy Awareness Day!

I won't lie and say I haven't imagined who Tyler could have been.  The other week, I sat and watched a dad and his son throw a football back and forth.  Man, was it a beautiful day!  Leaves were flying through the air, the wind was blowing softly, and it smelled amazing outside.  I closed my eyes, took a deep breath, and when my eyes opened, I saw Tyler and Ryan playing catch.  Ryan gestured for Tyler to "go long" and he started running away. When he caught the ball, he smiled.  On their way back in the house, Ryan rubbed his hand roughly through Tyler's hair and pulled him into his body for a side hug.  I blinked and was brought back to reality.  It made me a little sad, so I decided to go back inside and when I turned the corner to my living room, I saw Ryan laying down on the couch next to Tyler with their arms wrapped around each other.  Ever so softly, I listened to them coo back and forth at each other.  I know, cooing is something that babies do, but there is a soft sound that Tyler makes when he is happy and that's what it reminds me of.  Just like that, I didn't care who he could have been, but fell in love with who he is and the love that surrounds this house.

I post pictures of us smiling and write about our funny moments, but you miss the nights where we're in tears and on our knees begging for better days.  Tyler's body is slowly becoming deformed in a way and that will happen when you don't use it the way you're supposed to.  Today, I spent almost an hour changing positions to help him cough up junk that he can't get out naturally.  Ryan had to cuddle Tyler for an hour because tears were flowing down his face and he couldn't tell us why.  Today has been hard, which is normal, but these are the things people don't understand about CP.  It's more than not being able to walk or speak.  Also, I believe Zach Anner said it best when he said nothing is wrong with his body, but that CP is caused by brain damage.

Cerebral Palsy is ugly, but has brought a whole lot of beauty to our lives.  There's something special about waking up each day, devoting your life to helping someone through their own, in every way possible.  There's this connection that I can't honestly explain to most people.  When your only form of communication for years was through your eyes.  We have met incredible people through this journey.  Unfortunately, we've witnessed hate, but we've experienced more love than anything else.  Walking away from this life is not an option.  Without us, Tyler wouldn't be able to live the life he does, but without him, I would be dead inside.  Through the years, the two of us have kept each other balanced.  Tyler having CP has pushed me to the most uncomfortable and scary places I've ever been.  If it wasn't for all of this, I wouldn't be who I am, as cliche as that sounds.  His disability has prepared me for this life and has helped me be a better mother to all of my children.

Tyler has made us all more gentle, patient, accepting, and understanding.  I don't know who Tyler would have been if he was healthier and free of his disabilities, but I'll tell you what, in his ten years of life, he has taught us more than anyone else I've ever known, and I feel like that's because of his trials.  Tyler isn't an inspiration because he has Schizencephaly or Cerebral Palsy.  He inspires me because of the way he carries himself through it all and how real he is.  He has the ability to accept his completely crappy situation and keep going, keep learning, keep pushing himself.  Who knows, maybe he'll write a book one day!?  I believe in his abilities.  I believe in Tyler.

I've always believed in finding good in crappy circumstances.  That's how we survive over here.  Today is Cerebral Palsy Awareness Day and I want people to understand that Tyler is so much more than his disabilities.  They're apart of him, and there's no changing that, but he is smart, funny, a geek, loves anything to do with farts and poop, and most of all, he's a fighter.

"The future is worth it. All the pain. All the tears. The future is worth the fight." -Martian Manhunter