no silver bullet

The honeymoon is over. It happened in the bath ... again. Michael called to me from the top of the stairs and I sprinted up as he was awkwardly lifting Calvin out of the tub. Our little boy was pale, dripping and rigid, looked like one of those hard plastic dolls with the stiff limbs, thick unruly hair and glassy eyes that open and close but only stare vacantly dead. He was still grasping the orange and blue plastic football in his trembling claw. We laid him on the bed, covered him with a towel and waited it out. His bloodless face appeared the color of a stormy sky, like a river stone with little beads of dew trickling down its surface. This seizure, like the last, was sickeningly silent, the type I’d easily sleep through and possibly wake up to later in horror.

When it was over I rushed downstairs to prepare Calvin’s nighttime seizure meds. By the time I returned Michael had gotten him into his pajamas. He was whining and already fighting sleep. It wasn’t easy to get him to open his mouth for the six and a half pills—much less get him to swallow them—but having done so countless times before, we prevailed against his drowsy thrashing. Just as Michael was laying him down he fell fast asleep. We latched the bed’s side panel, drew over the safety netting and secured all four points. As I looked down through the cotton hammock’s hexagonal pattern to my sleeping babe it was as if I were peering through a fence. My boy is trapped, I thought, fenced in by a vicious cycle of silent seizures and more drugs, drugs and more seizures. Maybe, like Michael says, there really is no silver bullet.

As I padded my way downstairs, I wondered if one day I’d be stepping down them childless, into a hollow shell of a kitchen—a living room—where my child didn’t live anymore. Will we be living in a home void of the pitter-patter of little feet, void of Calvin’s happy giggles, of the excited splish-splash in the tub every night? What is this gnawing feeling inside me I’ve always had that Calvin’s time here on earth will be short? I sat on the toilet in the dark crying, grieving our unraveled string of forty-seven seizure free days, and gazed blearily into the tidy mudroom we had built last spring with the cheerful inside window, the warm kitchen light streaming through its panes. Somehow, seeing it made me feel better—the strong wooden bench with its little cubbies holding our duffels and shoes and hats and scarves and gloves, all in their right place looking like some rustic photo shoot for Maine Magazine. This home of ours with its chipped paint trim, creaky floors, dust-bunnies, drool stained windows and grubby little fingerprints everywhere, soothes me.

This morning it is raining. I’m looking through a window dotted with shiny droplets, out to the knotted tangle of mossy branches, which is our front yard tree. Last winter, I think it was, a big hunk of it broke off in a storm, leaving a gaping hole in its crown. I wonder if parts of Calvin’s brain suffer the same demise in the repeated electrical storms that rage inside his head. And so, I take every chance I get to kiss that sweet little head, his so-soft chubby doll-faced cheeks, his little bird neck, his eyelids, his ears, his button nose, his thick shining hair. I kiss him as if there is no tomorrow, because, without that silver bullet, I’m never sure that there will be.

Please share Calvin's story. Help bring us one step closer to that silver bullet—a cure.

photo by Michael Kolster