Iffy, She Says

Tucking Rachel into bed for the night, we're laughing, she's taken her bedtime dose of oil, and she's got a chewy candy in her mouth, when she suddenly goes still, then hastily swallows the candy. I immediately feel tense.

"I feel iffy, and have some quiet sounds," she says. 

I grab the VNS magnet, and ask if she'd like to be swiped. She nods, so I swipe across the implant over her left breast, and ask if I got it. She nods again, and then does some slow, deep breathing. 

This could go either way. It could pass fairly quickly, or descend into a more involved seizure. Right now it's what would be called an aura, but is actually a simple partial seizure. Rachel is still very aware, talking with me and trying to distract herself so she doesn't panic and make things worse.

The swiped VNS will run for a full minute, at an increased amperage over it's normal setting. I check the clock. It's been more than a minute.

"How are you feeling?" I ask. "Do you still have sounds?"

"Yes, but they're quieter now." 

I take a deep breath. Maybe we'll get away with this tiny seizure, just this once. It's almost too much to hope for. It would be a one in 300 or so that a seizure is this small, and there's no panic attack.

"My head feels like it's full of fluff," she says. 

Rachel's eyes are red rimmed, and the lids are puffy; a sure sign that she's pretty tired. 

"Do you think you can lie down, or will that make you feel worse?" I ask.

"I don't know, but I'll try it and see." She does lie back, and indicates that she's feeling okay.

I hover for a minute, hesitating to turn off the light and walk away, only to hover over a monitor in the living room.

"Mom, I'll call you if I feel bad again. Don't worry."

I always worry. But I turn off the lamp, touch her arm one more time, tell Rachel I love her, and leave the room. I never leave her without saying "I love you." I live in fear of SUDEP stealing her from me.

I pull my computer onto my lap and open the seizure calendar. This has been a busier month than she's had for awhile, but somehow this tiny partial seizure has given me some hope. I check the clock again, check the monitor again, enter the seizure details on the calendar, but don't close the calendar just yet. I want to be sure she falls asleep before I do that. I tell myself it's just expediency; so I don't have to go through the wait of having the program open again if she has another seizure, but the truth is that somehow I feel like leaving it open means another seizure won't happen, like a talisman against that evil.

Before epilepsy I was never superstitious, and I still halfway believed in God. Before epilepsy a lot of things were different. Before epilepsy, life wasn't so iffy.