tinker and toil

The last thing I wrote in Calvin’s journal yesterday was “suspect seizure tonight.”

I had called my father-in-law in tears after Calvin and I had returned from a stressful trip to the grocery store. I told him how Calvin’s recent screaming is grating on everyone’s nerves—me, Michael, the nurse, Rudy the dog, and likely several patrons and cashiers at the grocer. Yesterday it culminated into an exasperating apex. I tried holding Calvin’s face in my hands, with my forehead to his forehead, telling him to be quiet and not to scream in the store. Nevertheless, the manic behavior snowballed into an avalanche of horrific shrieks simulcast into the salt-covered parking lot. As I strapped Calvin into his car seat I held his face some more and told him to stop. He didn’t. Utterly defeated, I trudged to my side of the car and caught eyes with a woman, having just passed us by, as she entered the store. She was gawking at the spectacle, which was us.

Calvin’s manic behavior has worsened in the past several months. My gut tells me that the hyperactivity is drug related, that one of his seizure meds could be the culprit. However, since there are no guarantees of what mechanisms are at work here, we are left to just tinker and toil.

And, as I had expected, at two-thirty this morning I awoke to the sound of Calvin’s constricted breathing, as if his face was mashed into his pillow. As upsetting as any, his seizure was slightly less convulsive and a bit shorter than most—something to celebrate. Though, the celebration may be short lived because, in an attempt to improve his manic behavior, we’ll be reducing one of his drugs, and with that change we’ll likely see an increase in seizures.

So we’ll continue to tinker and toil putting strange toxic, mind-altering chemicals into our child’s precious body and brain, hopefully not completely in vain.

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