9.20.2011

seizure number one

Six years ago Calvin had his first seizure. He was a year-and-a-half old but appeared more like an infant because of his small size and lack of ability to do most things. Even his distinguished Mickey Mouse glasses didn’t give away his true age. He was just beginning to sit up by himself but couldn’t crawl, though we practiced together on our hands and knees for hours at a time.

The morning of the fateful day Calvin awoke listless and pale, so after breakfast we put him back in his crib and he fell right to sleep. Later, he was lethargic in his johnny-jump-up—slumped—like a dead parachutist instead of performing his usual pirouettes. After his second nap, he felt warm so I took his rectal temperature again. The slender white thermometer beeped reading 102.6. We gave Calvin some acetaminophen in hopes of reducing the heat and, having never known him to have such a high fever, I called our local hospital. It was late on a Sunday afternoon.

The doctor I spoke with was not a pediatrician. I described Calvin’s symptoms as well as his neurological deficits—the ventriculomegaly, the hypothyroidism, the global developmental delay, the cerebral palsy—and asked if there was anything to worry about. “Nope,” he said, “kids can tolerate much higher temps than adults, sometimes as high as 106 degrees.” “Even kids with developmental delay?” I asked. Though his answer was confident, I hung up the phone quite dubiously.

Michael lay next to Calvin on the futon and ushered a little smile from him. I crouched down to join them just as Calvin suddenly cracked like a whip into an arch stiff as a steel rod. His eyes bulged from their sockets, his lips pursed as if drawn up with thread. Michael gathered him up, instinctively—worriedly—rocking him back and forth as if to jostle and coax the seizure out. I white-knuckle-called for an ambulance.

“My son is having a seizure,” I blurted, “he’s one-and-a-half and he’s not breathing—he’s turning blue!” The walls began closing in on me, Michael’s rocking tumbled the room on its side like some circus house of horrors. Sounds morphed and muffled. Everything around me looked hazy—blurred—as if in a cloud, except for my boy who remained in sharp focus. Cradled in his father’s arms, now jerking rhythmically—violently—Calvin’s face became ashen like a dry river stone or a corpse, his eyes rolled back into his head so that only a sliver of his beautiful blue iris shown. The woman on the other end of the line kept me there, confirmed our address, took details. I spat off answers between shallow breaths, my heart pounding in my head. Time stood still as in a dream. I wasn’t sure if Calvin was alive even though his shudders persisted. I couldn’t find a pulse.

My next memory is of the cold hard edges in the ambulance, the sterile sickeningly gray vinyl benches, the long black seat belts, like snakes, with steely buckles for heads. My tiny child lay in the center of a huge flat, sheeted white gurney, his eyes now vacant and still staring up at the bluish-white light in the ceiling. I feared he might remain that way forever because of the seizure. Little did I know then that some kids do.

Please share Calvin’s Story with others. Help bring us one step closer to a cure for epilepsy. PLEASE.

Calvin at 18 months

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