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Monday, July 6, 2015

Watermelon Eegee. Six Years Later.

The other night I was sitting on the couch drinking a watermelon eegee. It's an icee type fruit slushy, but way better than that. Christian was sitting next to me so I leaned over and asked him if he wanted some. He didn't really answer so I just put a little in his mouth. 

I went back to drinking my watermelon eegee and I hear a..."Eeeeehhhh."

It was Christian. I said, "Do you want some more of my watermelon eegee?" He gave me a half smile, which means yes. So I gave him some. I went back to eating my watermelon eegee.

"Eeeeehhhh!" - Christian
"Oh, you want some more?" - Me
(Half smile.) - Christian

And this went on a couple more times.

This is where we are six years later. Sharing watermelon eegee on the couch. We have smiles. We have some communication, including some pretty consistent signs for yes that more than one person can understand. And it's...heavenly. It's everything I never knew if we'd have or see. 

Where he is blows my mind. I could sit here and talk about how hard and terrible it is to have a child with special needs and if that's what you ever have come to this blog to read, you've got the wrong mom and the wrong family. I'm not going to go on and tell you how we struggle. You already know the story. You already feel sorry for us when you see us on the street. You're already thankful it's not you and yours.

But it's okay. Because you just don't even know how amazing this child is. He is the greatest teacher, the greatest snuggler, and probably my easiest child. Yes, I said easiest. He's rarely unhappy. He just wants to be held. I love his smile, I love his warm skin, I even love the way his breath smells, still a little like a baby's.

I've told this story before but I remember very vividly after his drowning, his induced coma, and him "waking up" with basically a brain that had been completely erased, I remember thinking - he doesn't even know who I am. It still breaks my heart to think about that mom, feeling hopeless when the baby she gave birth to just a year prior didn't even know who she was.

It absolutely blows my mind that maternal bond - that momma-baby stuff - transcends through all of it. Through the blank stares, the nonstop crying for two years, the vomiting, the therapies, the sad looks, the devastating news, the constant seizures, the fixing and the trying and the fixing, somewhere along the way we found each other again, my boy and me. We figured each other out. I got to know him. He got to know me. Somewhere along the way we reconnected. And all of the sudden nothing was lost. I had him and he had me and even though he is a completely different child than the one I gave birth to, the bond is the same. I truly believe not even a catastrophic brain injury could erase it. I am his momma and he is my baby. Forever.

Is our life difficult six years later? I guess that's relative. We really live our life in a way that includes him as part of the family. He makes our life better, not harder.

Is there some sadness? Sure. Sometimes. He had an end of the year play with an under the sea theme with the rest of his first grade class. He was a crab and he even had a cute and funny part with his aid. But when he's up on that stage my mind is doing two things - being proud and in awe of seeing my son included with his classmates who simply grab his hand and swing it like it's no big deal and feeling a little sad because I can't help but compare him with his classmates. I see the fidgety boy who's tall for his age and wonder if that's how Christian would be. There's the well-spoken boy who knows all his lines with the hipster glasses, would he have been like that? There are the two boy goofing off in the corner, would he be like them? I wonder who he would've been while being grateful for who he is. It's a strange position of push and pull that's hard to articulate. And then I see him on stage on his aide's lap playing his little game where he pushes himself back using his extension over and over again so he dips and goes upside down and then smiles as he comes back up. He does this on stage during the play.

So I guess it's fair to say he's the trouble maker on stage.

Is our life difficult six years later? I guess that's relative. I guess we really live our life in a way that includes him as part of the family. He makes our life better, not harder. So if you're a new family reading this with a child who has special needs or a child who just acquired special needs through an accident of some sort my take on it is that it DOES get better...if you let it. And when doctors or specialists or studies or google tells you that there is no more healing or progress after 6 months, 12 months, two years, let me tell you something...

THEY ARE WRONG.

Here's to six amazing, wonderful, miracle years with this boy we love so much.


















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