I Wish, I Wish, I Wish...

It's fall break for the medically complex one.

I'm in the next room while he's watching his "shows": any one of Blue's Clues, Go Diego, or Dora the Explorer. I can tell by the cadence right now and the exclamation of "Baby Jaguar" every now and then that I last left it on Diego.

Austin is "talking" to the show. He is constantly humming or moaning at the voices. Every now and then a giggle, and every now and then a whine. My favorite sound is a bold UH, UH, UH with emphasizing shoulder shrugs. But I'm not always sure what triggers what. I don't really know what he's trying to say.

This is not how I thought his almost 9 years would be going. One of the many things you do as a parent is teach. You pass on information. You show them how things work or what to do, how to respond. And little by little by mimicking you, they learn to do the things. They gradually become little adults. It's so very rewarding when they respond to your efforts and start to become independent people, exploring and learning on their own.

But with Austin, you have to look really hard to see the progress. I don't really know if I've "taught" him anything because its very difficult to tell if he's learning. You don't really know if he gets it. Specifically because his speech is not our speech and his movements are barely controlled.

So unfortunately, I tend to assume he doesn't get it. Because wouldn't he be really upset that we weren't understanding him if he was truly trying to communicate an answer to a question or a desire we had not offered to fulfill? But no, he mostly just smiles and laughs at questions. He seems to just be happy you are talking TO him instead of over him.

I tried and tried and tried to work on communication when he was younger. And I know they still do at school. And they act like it's working, albeit slowly. But at home, I just finally gave up. Which I kinda had to for my own self preservation. The disappointment was too much. I had to let go of all the typical expectations in order to live.

But oh, today during fall break, as I stand over him and run my fingers down his body from his head to his toes. I just wish I could interest him in something, anything besides his shows. I just wish I could show him a toy or set it in front of him and he would want to know about it, touch it, engage with it. I wish I could direct his hand movements, and he would copy what I showed him. I wish I could make a face, and he would try to make the face back at me. I wish I could reach for him, and he'd reach back.

Oh my heart today. I know it's a passing moment of sadness in the midst of the ever present surrender and acceptance that I try to practice daily now.

But oh today, I wish, I wish, I wish...

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