When he was 5 years and 360 days old

I keep a yellow sticky note on my fridge.

It says

quote from Ty, age 6 in 5 days (it's dated ) 6/10/10

"your eyes shine like the sun"

"Your hair flows like the waves of the ocean"

"your tears sound like rain drops"

I kid you not, this was exact quote from my little boy when he wasn't even 6 years old yet (had 5 days to go!).

This is the kid who so many have just wanted to throw their hands up and say, "I don't know".

And if anyone has ever wondered why we do what we do for him- and I"m first to say it's a sacrifice, but isn't that what life is about. Making decisions- we made the decision to have children. With that comes it's own set of sacrifices compared to not having children.

And when you decide you want to have children, you want to be parents, there is no where that says "okay, you've now made this choice, and we guarantee a healthy child"

It comes with the territory of knowing there will be a future of unknowns. Is it a boy or a girl? I don't know, we didn't find out and there's no picking or choosing.

An unknown that the child will be born healthy for the rest of his/her life.

Unknown

what happens if the child is born with a disability? A health condition? These are not choice, these are what life gives us- and a child is not his or her disability. A child is not some medical term used to describe a set of symptoms.

A child, my child, our child, is our child! And despite all his struggles, and disabilities, his behavioral outbursts,

he is our little boy and when he was only age 6 in 5 days (so really only 5 years and 350 days old) these most amazing poetic beautiful words came out of his mouth, thought of by his brain, and said to his mommy.

That's who our little boy is- and "sacrifice" or not, we will continue to fight, conquer, and hold his hand every step of this journey. I/we will continue to do everything in my/our power to allow our little boy, to be the little boy God intended here on Earth. And as much suffering as he's been through already in his short 9 1/2 years of life, it is our job to help him live to his full potential- no matter what that looks like.

But based on this sticky note that sits on my fridge, he has a lot of potential! Wouldn't you agree?

This is a picture of him on his 6th birthday- notice the little blue puppy he is carrying up the slide- that is still a treasured stuffie! This is my boy!