Mostly because I go into it with opposing emotions. Part of me wants the doctor to see how much Christian has grown. I want the doctor to see that he can communicate, that he can be interactive, that he will look at you if you talk to him.
On the other hand, the opposing emotion, worries that he won't show them what an awesome kid he is. They won't see it. They'll see a patient. A four year old boy with severe brain damage that won't look at them when they say his name. And, although they try to look as detached and clinical as possible, I can see it. It's the hint of devastation they feel for us. They don't see who Christian is.
So on one hand I look forward to these appointments, but on the other hand I dread them because they tend to cause me this weird anxiety and I couldn't seem to figure out why.
I also feel the same emotional opposition when strangers first meet Christian. I wonder what they'll think. Will they be able to hide how they feel? Will they look sad and devastated? Will Christian make eye contact? Will he give them what they want when they say his name? Will he respond?
Then I read a friend's blog about her daughter and she hit the nail on the head. The anxiety, those opposing emotions, come from the desire to make them see.
I want to make the doctors see him. I want them to see he speaks with his eyes. He communicates with his grunts. And when he is interested in something, he looks.
I want new people to see that he isn't this child in a vegetative state, staring off into space instead of responding to their enthusiastic hello. I want them to see he is really in there.
I think if I'm being really honest and digging deep down, I constantly feel the need to prove that he is worth it, that he deserves to be here, that he was worth saving, and that if you give him a minute, he'll show you.
But, alas, most people won't see. Doctors and strangers only spend fleeting moments with Christian. And I've discovered something about my boy that I suspected a while back. He will not engage if he doesn't know you.
We went to our neurology check up a few weeks ago. These are the appointments I really want him to perform and show off everything...anything...he can do. And he never, ever does!!!
We were in the room waiting for the doctor, I was talking to Christian and showing him my phone. He likes smaller things with light, so anytime I hold my phone up, he pays close attention. I flipped through pictures, having his attention the entire time. I put the phone down and he grunted in disagreement so I brought them back and he stared at each picture as I flipped through. Colorful light and bright smiling faces of his sister, and handsome pictures of him. He was fully engaged.
Then the doctor walked in.
And Christian shut off. He turned his head to the side and powered down. He would not show off. He would not engage. Christian had left the building.
I didn't say anything to the neurologist about how he was just fully engaged in the viewing of pictures on my phone, tracking each one carefully. No use. I would then be seen as the crazy mom who sees things that aren't there. We talked, kept it pretty clinical, they asked how he was doing and I said great and I'm sure they were like - Yeah, okay, lady.
I always leave those appointments thinking - Why don't they see? How can I make them see that he's this completely awesome kid if you just give him a second? Oh, well. It's always slightly anticlimactic and equally disappointing.
Then we started school. The second day of school he seemed tired. When I walked in he was checked out, turned to the side, but when I started talking to him, all of the sudden Christian was back and listening and paying attention. The OT even said that she couldn't figure out what was wrong and wondered if maybe he had stopped tracking over the summer. But then saw that he just didn't want to participate! Because when I showed up, he was looking everywhere I was. Stinker!
So what I've learned is that if he doesn't know someone, if he's in unfamiliar surroundings, or even just tired, he will shut down and won't engage. It's not that he can't. It's that he won't. What a little stinker!
But here's the thing...if you give him a second, if you get to know him, he's in there. He has an opinion. He'll look at you. He'll engage. He'll make you see.
Aaaand he's looking at the phone again.