3.31.2012

cluster bomb

This morning my sister and I put Calvin into the stroller to set out on a walk with Rudy the dog. As I bundled up Calvin in a thick fleece blanket suddenly the color drained from his face, his eyes began jerking and fluttering, his mouth slackened and he turned pale and listless. "He doesn't look good at all," I said, so we quickly took him out and I ran him upstairs to secure him in his bed. He seemed to perk up so I gave him his orange plastic football and grabbed the opportunity to take a much needed shower. I put the baby monitor at maximum volume and set it on the windowsill near my head. Lathering my hair I heard him coo and shriek as he played with his favorite toy.

As I stepped out of the shower, though, he became silent again so I hurried into his room calling, "Calvin!" He was lying on his back at the foot of his bed, football firm in his grasp, with a slightly flushed, expressionless face. He did not respond to my words. Suddenly, he snapped out of it again, though he seemed very tired so I dragged him up onto his pillow, covered him and tucked him in. Again he silenced as the sickening pallor crept over his face. I noted an almost inaudible click escaping from his lips—a sound I regrettably know all too well from his countless partial seizures. With eyes just shy of half-mast he drifted off to sleep. The insidious cluster of seizures seems to have returned.

I'm watching him sleep like a hawk right now, peering down through the safety netting atop his bed. His parted eyes look dead. These are the kind of seizures that repeat themselves throughout the day and can develop into status epilepticus, the serious, sometimes lethal condition of serial or prolonged seizures often difficult to stop. These are the cluster bombs that can resist emergency medication, put us in the ER—sometimes requiring emergency intubation—and eventually land us in the pediatric intensive care unit fearing the very worst. These are the stealthy seizures that come out of nowhere—like a menacing thug in some dark alley—and silently batter our little boy's brain.

Kids die from this stuff, I think to myself. And yet most of the world has no clue—thinks epilepsy is a benign condition where you take a pill and everything is okay. Oh, how I wish it were so.

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2 comments:

  1. My word. Wishing you all the best.

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  2. I'm so sorry for Calvin. Thinking about you.

    Federica

    ReplyDelete