J said that to me as we looked out from the third floor, over the railing, across the first floor of the California Science Center today. Children from summer camps across Los Angeles teemed below like red, blue and yellow water drops splashed onto a hot skillet.
"Can we go home?"
Did I say I imagined improvement with the vocal tic? Yeah, I imagined improvement. He's got this loud "huh" thing going on so much he's gotten hoarse from it. At the museum today, people would turn and look at him, and he'd glare right back. At other times, he just looked down, eyes hidden behind thick hair, cursing under his breath.
Called the doctor and said, "WHEN will we see improvement with the Keppra?"
In a few weeks.
Called the doctor again and left a message on the machine, "Can I add Tenex to the mix since the Clonidine isn't doing much?"
Probable answer: sure but there still won't be much change for a few weeks.
Yeah, yeah, I get that but see I'm fucking desperate to help, desperate to ease the tough circumstance, desperate for the magic fucking pill to make this fucking thing GO AWAY.
"When's it gonna change, Mom, to something less noisy?"
"I don't know, baby, maybe you can try to do something else. I've heard some people can psych themselves into a new, different tic."
He's starting music camp on Monday, a new camp where he won't know the children and he'll have to deal with the explanations and possible rejections and possible misery. To tell the truth, I've got a stomach ache from all this. He's stressed, too, but he has no idea the agony his parents are in. As a parent, you want your child to be the "best they can be," and yet here he is in a virtually unchangable situation. Yeah, yeah, I know this could be worse. Thank God it's not cancer, or some other life-threatening circumstance, thank God he's here at all, yes, I get that.
But still. God damn it. I hide it though, I offer positive thinking to him. I say, don't get mad, just educate them. You're talented at the drums, you're going to make them forget the Tourette's.
"I hate this so much," he says to me.
Dinner tonight...pizza. There goes our good eating habits. Pizza and buffalo wings and something fried the place offers for free that you dip into ranch dressing. Positively deadly.