This morning before dawn, day eight since Calvin's last seizure, Calvin suffered back-to-back tonic-clonic (grand mal) seizures. The THC rescue med I rubbed into his gums during the first one did not thwart the arrival of a second an hour later. Perhaps, had I given his morning dose of clobazam early—the benzodiazepine we are weaning him off of—we might have prevented him from having two, though I am loathe to give Calvin anything by mouth in the wake of a seizure in case he has trouble swallowing. Having said that, we often have no choice and so next time we'll opt to.

Hoping the twin seizures wouldn't cluster into a third, we gave Calvin rectal Valium, another benzo, which his body no doubt craves and which we hate to give because of its propensity to mess up Calvin's sleep and for its reputation to cause respiratory suppression. He's been lethargic and sleepy most of the day, though seems to be coming back to life as I write.

After this morning's seizures, I noted a crease in Calvin's brow, indicating to me that he felt some pain, likely a nagging headache. The crease remained much of the day, and so I stroked his head and kissed his face and gave him some pain medicine and held him in my arms when he woke from a nap with a racing heart.

There's really no way of knowing the amount of suffering Calvin endures. Suffice to say he deserves none of it. He's not here to teach my peon brain a lesson, not here to show others what they should be grateful for, not here in his wrecked condition because the universe is trying to find balance, or because of free will or karma, or God's plan, which according to some includes ratcheting up my son's suffering to just as much as he can handle, thought not more—a platitude equal to the biggest crock of shit I've ever heard. Calvin is not here to improve himself for the next life or to pay for something he did wrong in the last. He's just here suffering for no good reason, which is the best reason I have to love him and hug him and squeeze him and praise him as much as is humanly possible as long as we are here, and to never give up on finding ways to ease his pain because no one, including a so-called merciful God, is going to do it for us.

1 comment:

  1. It is so hard to see loved ones suffer. I feel for all of you.