counting seizures counting drugs

Today is day nine ... nine days since Calvin’s last observed seizure. I can remember times as recent as January when I counted up to seventeen, or years ago when he hit twenty-seven, or even forty-three. I wonder if we’ll ever get back to those days again. I dream of a time when we can stop counting all together.

Last night Calvin was pretty restless, sitting up in his crib several times and falling backwards, his feet pinned under him as he slept on top of the comforter. Each time I went in to reposition him, cover him and offer him water.

At three-thirty I awoke to a tiny squeak not unlike a puppy’s whimper, but I knew it was Calvin. I whipped off the sheets and darted into his room, flicked on the light to find him writhing in his crib, his covers partway off. Michael and I leaned down into the crib and stroked his hair, his peachy skin that shuddered and convulsed beneath our loving touch. We waited and watched—nothing else we could do. The third and final phase of his seizure, when he trembles and jerks, was longer than usual. And when it was all over we shared Calvin’s weight, Michael at his shoulders while I took his hips, levitating him, and then placed him gently into our bed.

For at least half an hour Calvin suffered aftershocks, little shivers and twitches punctuated by the occasional rigid extension of his legs. His belly was distended with gas so I traced smooth circles clockwise on his soft abdomen to try and tease it out. Finally he drifted off to sleep, my hand on his warm chest feeling its lovely rise and fall.

As I slept his fits persisted in my dream. Not long after the first seizure Calvin started into a second one. This time he coughed up blood and cried. In the dream somehow I couldn’t get to him—felt the same kind of sick helplessness that is our reality. No way to save my child from these relentless attacks. No way to kiss it and make it all better. No way of knowing what my boy might have been—might be doing—if it weren’t for these wretched seizures repeatedly scalding my sweet one’s brain.

This morning at breakfast I increased one of Calvin’s seizure meds ... again. He’s pretty much maxed this one out, like so many of the others we’ve tried that have failed him. I’m not really sure how his little developing brain navigates at all what with so many different drugs continuing to soak into it like chloroform in a sponge. I fear we will have to try yet another drug—the ninth one—in the not-too-distant future. The current ones make him hyper. Will the others send him into a lethargic stupor again? And as long as he must take these drugs he’s not really my kid. He becomes some sci-fi horror flick maniac or zombie under the spell of these volatile toxic potions that morph this kid—who used to be mine—into someone who, at times, I’m not certain I can ever really know, but nevertheless love him with every cell of my soft animal body.

photo by Michael Kolster

No comments:

Post a Comment