More than once I’ve been approached at the post office or market by people who say that Ruby has a gift—something beyond bedside manners. “It was like she could see what was on the other side,” an elderly woman told me after euthanizing a beloved dachshund. “Like she knew exactly where that dog was going.”

By going, the woman means going out of the body, going beyond. In Ruby’s case, it means going to bed with nocturnal epilepsy, a condition that causes seizures while she sleeps. This gerund has governed our lives for the decade and a half since my daughter was born: going to go to sleepovers at friends’ homes, or to a summer camp where she’d share a cabin with other girls. She’s going to have another one, I’d worry.

…

For the past fifteen years, I’ve spent most nights on the floor of her bedroom in a sleeping bag within arm’s reach of her bed. Before her limbs begin to stiffen, my mind turns to metronome, counting the seconds she fails to breathe. I could not even tell you my name in those moments, as I reach for her quaking body and a syringe full of interruption. But I could describe to you how adrenaline chainsaws my cells, how a seizure lasting sixty seconds is an eternity. I could measure my desperation in the number of prayers I dole out at night, to every deity known to humankind. I could tell you how rote things get when gods fail to answer.

…

I have burned through thousands of dollars on these things, on seizure alert systems that lured me with their promise of sleep between each episode. This is not so much so I can sleep in my own bedroom, in a real bed, with my new partner—although I am dying for all these things—but so I won’t sleep through the one epic seizure that leaves her face down and smothered in the bedding.

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