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.

Read more on Orion.

Written by External Article
Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection. Have a great story about caregiving? Use our contact form to submit it to us so we can share it with the community!

Related Articles

The Man in Room 117

The Man in Room 117

Three years ago, when he stopped taking his antipsychotic medication, her son withdrew into delusions, erupting in unpredictable and menacing...

Popular categories

After Caregiving
Finding Meaning
Finding Support

Don't see what you're looking for? Search the library

Share your thoughts


Share your thoughts and experiences

This site uses Akismet to reduce spam. Learn how your comment data is processed.

Join our communities

Whenever you want to talk, there’s always someone up in one of our Facebook communities.

These private Facebook groups are a space for support and encouragement — or getting it off your chest.

Join our newsletter

Thoughts on care work from Cori, our director, that hit your inbox each Monday morning (more-or-less).

There are no grand solutions, but there are countless little ways to make our lives better.

Share your insights

Caregivers have wisdom and experience to share. Researchers, product developers, and members of the media are eager to understand the nature of care work and make a difference.

We have a group specifically to connect you so we can bring about change.