And I felt like I was holding my breath until Cait walked through the door, back from California, looking tired but like her usual happy self. It was late, we waited until the next day to talk about what had happened.
“Everyone is going to treat me like this all summer now, aren’t they?” She asked as I told her we had to turn back in the lake. I joined her for a swim because she can’t swim alone now, I don’t care how close to shore she stays. We were halfway out to the buoys and would have kept swimming but then I hesitated. Not because I wasn’t confident in Cait but because I am SO out of shape and despite 40 years of swimming I didn’t trust myself to bring her back if we went further.
When we got back in car, Cait told me she was going to have a long bath when we got home. And I had to say no. When she was 6 her neurologist heard she was taking supervised baths on occasion. He was livid and spewed out statistics on how many people with epilepsy die every year in the bathtub. Still I love my bubble baths so as Cait had been seizure free for so long, I’d let her enjoy that occasional treat. But now I have to say no. She is irritated and frustrated. “I’m going to have an hour long shower then.” She told me. I agreed. Showers are generally considered safe for those with epilepsy.
This time Cait has some memory loss from the seizures. She doesn’t even remember if she had her aura before they started, which is unusual for her. She received a package from an epilepsy organization the day before she had the seizures and she can’t remember where she put it.
We haven’t talked about next steps yet. Cait was halfway through the first step of her taper off her medications. When she had the four seizures last week we immediately increased her dose back to what it had been before we started the taper. We need to consult with her neurologist but first Cait needs to think about what she wants to do. We talked about the various options: continue with the taper, wait until January and try again, or call the doctor and start the process of changing medications (one of the reasons for the taper was that Cait was having so many adverse side effects).
I think she hasn’t really processed what happened yet. She started thinking about her options yesterday and was leaning toward waiting until January to restart the taper and then she stopped. “But the doctor isn’t going to approve that anymore, is she?”
Ah, yes. She’s starting to get it. She hasn’t been 18 months seizure free anymore. She has been 6 days seizure free. And that is such a huge difference.
This was the first time Cait had seizures when I wasn’t around. Sure she’s had the occasional seizure at school or a program but I was always driving distance away. This time I was on the other side of the continent. I couldn’t get to her any faster than 6+ hours even if I tried. And it was the first time her dad had to help her through not just one or two but four seizures. They handled it so well but it was traumatizing for everyone.
My husband has said she can’t go anywhere alone for the next little while. “What about walking to town with my friends?” Cait asked after she expressed her outrage. “That’s not alone, sweetheart.” I reminded her gently. “But no bike rides by yourself. Not for a bit anyway until we see if you’re going to have more seizures.”
She nods but I can see the frustration bubbling under the surface.
The next few days are going to be tough. But for now we are taking it one step at a time. Cait needs to fully process what happened, what it means and where she goes from here. Then I’m fully confident she will do what she’s always done. Count her blessings and move forward with an optimism and love of life that astounds me.