forbidding sky

Today my mood is gray as the sky. My eyes feel weighty, my soul empty and cavernous. And, like the sky promises to do, little droplets of water cascade down my cheeks and splatter on the ground, even as my boy hugs my neck.

This morning Calvin is a bit of a psychopath, grinding his teeth, uttering guttural screams and rolling hums while snapping his fingers wildly. He mustn't feel good. I can feel the furrows set into my brow, like his own—the worry that I detest but cannot seem to control—and glimpse the reflection of my sorry mug in the bathroom mirror as I follow behind Calvin in his endless, manic pursuit of banging the window shutters.

This third anticonvulsant drug we’ve added to Calvin’s regimen, Keppra, seems to be doing a better job at controlling his seizures, but drug increases always come at a cost. Over the course of the last month, as we’ve titrated up on his dose, my little madman’s appetite has become increasingly worse, even refusing several meals.

About two and a half years ago we began weaning Calvin off of one of his three anticonvulsant drugs—a benzodiazepine related to Valium—because he’d become a zombie. He’d stopped eating half of his meals, wouldn’t take anything but yogurt, and regrettably lost five pounds in a couple of months (he was pint-sized to begin with.) To add insult to injury he began refusing his seizure medicine or—easily as stressful—held it in his mouth for up to ninety minutes before swallowing. As he reclined on the couch we sat anxiously by his side hoping the syringed medicine wouldn’t dribble out between his lips. It was as if he’d forgotten how to swallow, indeed one of the side effects of benzodiazepine withdrawal in addition to increased seizures.

This morning’s breakfast was a sour déjà vu of those times. It was clear Calvin didn’t want to eat but I had to coax several spoonfuls of yogurt in as the vehicle for his seven-and-a half pills, all but one of them anticonvulsant medications. “Calvin, this is your medicine, honey. You have to take it. Please take a bite for Mama, sweetie.” Eventually, after trying to reason with him, he relented and opened his mouth. “Good boy, Calvin!” Michael and I chimed, “what a good boy!” as I embraced him closely and kissed his cheeks. But that was it. He refused to eat anything else, a sad replay of last night’s dinner, the previous breakfast, dinner the night before and in days past.

I often think back to the time before Calvin had seizures, to the time where—like most people—I thought epilepsy was no more than an inconvenience, a benign condition where you could take a pill and everything would be okay. The reality couldn’t be more different. Epilepsy has turned our world upside down, shaken it to its core, battered us, bludgeoned us, wrung us until we’re withered and dry. We wake up every morning and realize, with no cure in sight, that this is going to be our life, our life with a child who at times is a zombie and at others a little psychopath and who barely progresses, a life full of seizures, worry, suffering, mountains of medications, sickening drug side effects, gross limitations on our daily activities—our dreams, our pursuits—and constant, gnawing fear. Would anyone choose that life? No. But, without a cure, unfortunately we have no choice but to live under this endless forbidding sky.

In honor of epilepsy awareness month please share this story with others. Help bring us one step closer to a cure.

photo by Michael Kolster