It's been the scariest, but most beautiful, time of my life.
I knew something was "wrong" when the Ultrasound tech said something that made my mom cry.
I didn't know what yet. I just knew there was something.
"It's his kidneys." They said. "They aren't developing properly."
What does that even mean?
All I knew was that my mom was crying and it made me want to cry, too.
He was born early. At 4lbs and 10oz, I don't think any of us were sure what would happen. I remember holding him and wondering how on earth it was possible that he was smaller than the teddy bear the hospital gave him.
But he pushed through. He did. And he was a rockstar.
Pretty quickly, it turned into more than just his kidneys. It was his back, his hernias, his bladder, his brain, and, most frighteningly, his heart.
It was then that new terms like "Spina Bifida" and "Heart Murmur" started to become part of my everyday vocabulary. It was then that I figured out all of what "Autism" really means.
My whole world started to revolve around this tiny little boy that wasn't even three months old yet. I couldn't sleep without worrying about him. I was afraid he wouldn't be alive in the morning. I was constantly stressing out. It was a struggle to go to school and leave him.
I thought that, somehow, as long as I'm with him, nothing bad can happen to him.
A little while later, they told us he would never walk. I remember for the first few months I wouldn't accept it. No matter what I wouldn't accept it.
Because even though I couldn't fix everything, I could definitely teach him to walk. I had to. I had to give him that.
The first time he walked to me was on a day when I came home from school. His developmental therapist was over and I got there and started telling him to walk to me, just walk to me, and he actually did.
And I couldn't believe it. Sometimes I still can't believe it.
This is what it means to love Kohl. It's sacrifice, it's pain, it's heartache, and it's beautiful. It's saying "I love you" and knowing by his sweet smile that he loves you too because he can't tell you.
It's laughing when he pulls out your hair because you know in your heart he would never mean to hurt you.
It's crying yourself to sleep, making yourself sick, or staying up all night because you want him to have a "normal life."
It's smiling when he bites you because you know it wasn't supposed to hurt.
It's loving him so very much that your heart hurts.
It's looking at him and thinking he's so damn beautiful and knowing life wasn't fair to him from the start.
It's wishing you could trade places. It's wanting to give him your life so he can have a go at it. It's wanting him to grow up and be an artist, a lawyer, a teacher, but knowing you can't make any of that happen.
Because he is pure. He is everything good about life.
And he deserves to get as much good as he has given.
He deserves all of it and more.
And you're pissed because you can't let him have it all.
I'd give anything for him to have it all.
And then I think, maybe he does. Maybe he has everything he's ever wanted. Lord knows we have all given him everything. Maybe he's happy and more than content.
And maybe, just maybe it's okay that he isn't always okay. Maybe it's okay that he gets angry, sad, and frustrated sometimes. Maybe he's really happy and loves everything about his life.
Maybe he has figured out things that the rest of us haven't yet.
Just maybe.
