10.17.2010

hoping and wishing

I can remember when Calvin was about to turn three, a year after having been diagnosed with epilepsy. He had just begun his third anti-seizure drug as the first two had failed. His balance and coordination had improved and I was hoping and wishing that he'd be walking on his own by his birthday. Unfortunately, the new drug, like the last one, had to be continually increased in an effort to thwart his seizures. With each subsequent seizure and dose increase he went further into a kind of stupor and he began loosing newly acquired skills. The independent walking has never happened.

From the time he was four until he turned six Calvin's development was, at the very least, stunted. During that period he was taking three seizure drugs and had begun the rigorous, high-fat Ketogenic diet. Calvin's severe regimen caused his smile to fade into oblivion and his bright eyes to become hollow, vacant disks. He was lethargic, weak, often sick, drowsy, uncoordinated and apathetic. We were losing the boy we had come to know, right before our eyes, and I wasn't sure we would ever get him back. Yet despite all of the weapons used to target his seizures their numbers and intensity persisted.

I can't help but continue to wonder if the treatments are as damaging and lethal as the seizures. I continually ponder, if it weren't for the drugs, would Calvin be walking by himself? What kind of boy would he be? What mischief would he be getting into? What words would he be saying? What would he be hoping and wishing?



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