It's very easy to kick myself. I'm good at it, especially since Calvin was born. I wish I had some crystal ball into which I could gaze and know all the answers in a blink of an eye. Instead, it takes months—years sometimes—just to begin to figure out the riddle of Calvin's seizures with each various treatment we try in an effort to thwart them, send them off course, obliterate them. As a result, I often look back and kick myself for acting too slowly in certain circumstances.
Why did we keep Calvin on that Ketogenic diet for two whole years when it didn't make a dent in his seizures? I thought, as I watched and listened—headphones on—to the neurologist sitting next to me in the studio of a recent radio call-in show about epilepsy. He said what I already knew: that it only takes a few days or weeks to determine if the Ketogenic diet will be effective. For some, it is very effective. For Calvin, it never was. Instead, it weakened him and robbed his ability to do so many things he'd just mastered, like crawling up the stairs and getting into standing by himself. Why so long? Because I am cautious and hopeful, perhaps too hopeful, holding on with a white-knuckle grip to each new treatment as if my child's life depended on it (which it does) thinking each one will be the silver bullet if I just give it enough of a chance.
I wish someone would shake me and say, it's been two years ... enough already! I suppose the universe did that for me when Calvin stopped tolerating the diet, when his seizures doubled, the result of weaning him from one of the three drugs he'd been on that made him into such a complete zombie. But every incremental change from one drug to another—off of one diet and on to another—takes so goddamn long it's excruciating. Would someone please invent that crystal ball? Until then, the only glassy orbs I can get lost in will be Calvin's indigo eyes and, while they say a lot, they only tell me half the story.
Why did we keep Calvin on that Ketogenic diet for two whole years when it didn't make a dent in his seizures? I thought, as I watched and listened—headphones on—to the neurologist sitting next to me in the studio of a recent radio call-in show about epilepsy. He said what I already knew: that it only takes a few days or weeks to determine if the Ketogenic diet will be effective. For some, it is very effective. For Calvin, it never was. Instead, it weakened him and robbed his ability to do so many things he'd just mastered, like crawling up the stairs and getting into standing by himself. Why so long? Because I am cautious and hopeful, perhaps too hopeful, holding on with a white-knuckle grip to each new treatment as if my child's life depended on it (which it does) thinking each one will be the silver bullet if I just give it enough of a chance.
I wish someone would shake me and say, it's been two years ... enough already! I suppose the universe did that for me when Calvin stopped tolerating the diet, when his seizures doubled, the result of weaning him from one of the three drugs he'd been on that made him into such a complete zombie. But every incremental change from one drug to another—off of one diet and on to another—takes so goddamn long it's excruciating. Would someone please invent that crystal ball? Until then, the only glassy orbs I can get lost in will be Calvin's indigo eyes and, while they say a lot, they only tell me half the story.
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| May 2005 |
Aside from the duration (eighteen years in my case), it scares me a bit how parallel our thinking and lives are.
ReplyDeleteI so wish we could sit down over coffee or wine or stiff alcoholic drinks and talk for hours and hours.
(As an aside, I look on our two forays into the keto diet as right up there with Sophie's diagnosis as far as trauma)
i vote for stiff alcoholic drinks. i will be in san diego end of september. very busy with my mom and brothers and sister but if you are in the neighborhood, let me know. we could do lunch. xoxo
ReplyDelete