humpty dumpty kid

Humpty Dumpty sat on a wall,
Humpty Dumpty had a great fall;
Threescore men and threescore more,
Cannot place Humpty Dumpty as he was before.

—English nursery rhyme

They keep coming—these seizures—reliably, awfully, no matter what we do to halt their progress, dampen them like hot embers being fed a dry breeze. They’re a squirrely moving target, at a thousand yards in high winds, a low sun—blood-red and blinding—nearly impossible to hit, no silver bullet to employ.

Every time Calvin has one (he did again at naptime yesterday and it’s only day seven in spite of a recent increase in medication) I think of that eighties anti-drug television commercial with the sizzling egg in a hot pan, “this is your brain on drugs,” the voice-over says. I can only imagine that the unharnessed electrical activity ravaging Calvin’s brain must be frying it inside out, like a microwave or a white-hot poker jabbing, burning and scarring his delicate, developing tissue. Every seizure must be like a mini nuclear bomb, the millions of tiny molecules and cells in his young, growing brain—his brain that is trying so very hard to learn essential, foundational things—getting scrambled into some unrecognizable, unsolvable puzzle that can never be put back together again, made sense of. My poor little Humpty Dumpty kid.

The lessons—skills really—that Calvin is trying to learn just keep getting interrupted, like a parent trying to digest a newspaper article while every few minutes his kid—interrupting—yanks on his shirtsleeve to ask him a question, “Daddy, Daddy, Daddy.” The neuropathways, which my son is so lacking in, seem to get tangled in menacing knots so tightly the arteries are simply cut off, leaving a series of dead ends—roads that go nowhere—abandoned, left to crumble, decay and wash away with the next flash flood that occurs inside his precious skull.

I see that frying egg every time we increase Calvin’s anti-seizure drugs, too. On top of the debilitating, brain-rotting seizures go the spuriously innocuous anticonvulsant medications meant to stop the seizures by slowing brain waves. Slowing brain waves. That equals slower thinking, slower reaction time, slower development. At what point—since we keep having to increase Calvin’s seizure meds because there is no cure for epilepsy—will his development simply plateau? Will he be locked in at a one or two-year-old level for the rest of his life? Will he regress? Will he die from a seizure that just never stops like a runaway train that derails above some dark, craggy ravine—like poor Humpty Dumpty who fell off of a wall?

Help bring us one step closer to a cure for epilepsy by sharing Calivn’s Story. Calvin and I do the hard work. You just push a button.

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