I’m jealous. I’m jealous of other parent’s nap time with their kids. A time when they can rush to get some housework done, work on a hobby, or even the luxury of taking a nap with the kids. The ability to not have to be in the same room as they sleep because you know they’re okay, and nothing bad can happen to them while they sleep.
I’m jealous of you. I didn’t realize I was until today.
Aria started napping again this past week, after about nine months of no napping and new found energy after coming off of two years of barbiturates and benzos. I wasn’t sure if she’d ever nap again, but I wasn’t upset over it, I was relieved. Nap time was always like bedtime, riddled with seizures. I’ve always sat with her until she falls asleep, and sat next to her while she naps, never venturing far, for that seizure was always lurking; one seizure always meant more were sure to follow. If I had to pee or get a glass of water, it was me sprinting down the hall, doing/getting what I needed, and darting back down to the living room, hoping she didn’t have a seizure while I was away.
When she stopped napping, I stopped worrying so much. She had more time for learning and playing, and I had more time to actually complete housework at once, and seizures didn’t interrupt our day. Now she’s started napping again, and all the worry has come back. Though this time around, her naps haven’t been riddled with seizures, they’ve been seizure free naps; but that doesn’t stop my worrying.
Just today, Aria had been asleep for maybe ten minutes. I contemplated laying down with her, but what if she has a seizure and I don’t wake up? The monitor isn’t in the living room, I could never know. So that’s out. I’ll just plug my headphones in and catch up on some shows. Before sitting down, I ran down the hall to make a cup of coffee. Not two seconds down hall, I hear this faint moaning, the sound she makes when she’s having a seizure. I run back down the hall, her rescue oil is already measured out.
She’s just sleeping, not having a seizure. Okay brain, false alarm. So I walk back down the hall to get my water, and I hear it again. I run back to the living room, false alarm. She’s sleeping so peacefully, but everytime I leave the room my brain imagines hearing her moan during a seizure. I’m so used to it happening all the time, especially while she sleeps.
I don’t know if I’ll ever be able to leave the room while she naps, to ever not be on edge, or if I’ll stop hearing “ghost seizures” when I leave the room briefly. I’m not yet used to the freedom whole plant CBD has provided Aria, and thus for myself. It may not be complete seizure freedom, but a handful or less of daily seizures is far better than 12 or more handfuls. She’d probably have to go a significant amount of time without sleep seizures for my anxiety to calm down; but it’s always when you start to relax that epilepsy rears it’s ugly head. We’ll just enjoy the success we have so far, and keep working towards better control.
*We’ve never done a sleep study, but we would like to down the road. This will be the first almost entire year of her life that she hasn’t been admitted to the hospital because of uncontrollable seizures; we didn’t want to put her through anything else just yet, after having gone through the surgeries. We will be going in for an EEG in the next couple months to see what her brain activity looks like now, a year after surgery and nine months on CBD. She seems to be responding well to the recent increase in CBD, to .75mg/lb, but hopefully her seizures remain frequent enough that we don’t have to be in the hospital for more than two days.
Until next time