5.28.2011

bright future?

At four thirty this morning Calvin awoke again to a seizure. He cried out, almost imperceptibly, and in my sleepy haze I half wondered if it might have been our dog Rudy. But of course it was not. These early morning barks, cries, howls and shrieks never are—they are always Calvin’s.

After nearly three minutes of convulsions we took the heavy bundle of our son into bed with us and he writhed and shivered like a cold wet puppy. The gas his body seems to absorb from spasmodic air intake is palpable as it creaks and bubbles inside his gut. It’s hard to tell if his seizure is completely over or if he’s rolled right into another one of a different kind. His eyes jerk and rove and he rubs his fingertips and thumbs together madly in a sick repetitious cycle.

He’s been having seizures pretty much weekly since early March, often in small clusters of tonic-clonic (grand mal) and partial seizures. I hate them. He’s taking way more medicine than a few months ago when he was going as long as two and a half weeks between fits. None of it makes any goddamn sense.

A cardinal chirped in the still glowing mist of dawn while I lay there in bed with my gurgling, contorting child. I thought to myself, and wondered, what the hell do we do next?

Later, as dapper college seniors strolled by outside our window with their handsome, put-together parents, some the same age as Michael and I, Calvin had two more seizures, one in the johnny-jump-up and one in his high chair, different than I have seen before. I think this might be a new kind, an absence seizure—petit mal.

As bells from the nearby campus chapel chime and hundreds of students in caps and gowns assemble on the lawn to celebrate an important milestone of their lives—graduating from one of the country’s top liberal arts colleges—Calvin has yet another seizure. And I realized while these sharp kids and their families prepare for bright successful futures I am sitting quietly and intently next to Calvin’s crib preparing for the next minute, the next seizure. Bright future?

Please share Calvin’s story with others and help bring us one step close to a cure for epilepsy. It's not hard. Just do it one story at a time.

photo by Michael Kolster

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