I’m on the floor of the boys’ bedroom about quarter past nine, listening to the iPod and sipping red wine like any other good dad when I notice Alex’s arm over the frame of his bed. I reach up to put his arm back into a position more comfortable him to sleep when I feel his weight come against my hand and I figure he’s falling out of bed until his head appears and starts to dip toward the floor. Then his body tips out with all the bedclothes and he cascades, limp, almost on top of me out of the bed in the dark.
“Jill, Jill!” I scoop him up – much as I can “scoop” a five-two kid who’s pushing 90 pounds – and hold him as a silver thread runs from his lips. He trembles; his knee muscles fold like dough.
There have always been instants of hesitation in knowing how Alex reacts to input of any kind. Pains seems to make him laugh. New foods make him say “NOOOOO!” and stiffarm the offer. He insists on wearing sandals well into October. This is different.
Alex’s last seizure was almost seven years ago. During the last bad one then, his head locked to the right. His head’s straight ahead here, but his eyes stare dead. “Alex? Alex!” He will not come back to my voice. Jill and I check all the signs of respiratory distress. He hangs there.
The yardstick of his growth that I was taught to follow was his lungs: He’ll grow, they told us years ago, his lungs will get bigger, and he’ll kick the oxygen tank and canula. And he did grow, and he did kick. His brain’s a tougher sell than his lungs, I guess.
Jill keeps a clear head. “Keep him upright. Ned, go out and time this.” Even I realize, my own breath coming short, that she tells Ned to do this to get him out of the room. He doesn’t leave, though. “We learned what to do in sibshop,” Ned says. “Keep him upright and time it and call 911.” Jill notices that Alex is hot and that heart is hammering. I hold him in the dark while Jill and Ned are in charge while I deal with my own sensory issues as stuff comes into my brain and I have idea what to do in response.
Seven years: more than half of Alex’s life, long enough for the brain to have caught up with the lungs if it was ever going to, and long enough for a dad to learn to live with as stable as a life as he can when his son’s autistic but at least seizures are behind him. I like to think things move ever forward in this life, but lately it’s hard to think that way.
My arms feel him return after a few minutes (“About five minutes,” we’ll tell people later, and when their eyes go wide we’ll revise the time downward.) Without so much as “Thanks,” Alex snuggles down to sleep and is soon cooler and his chest rises and falls with even breathing in the dark.