I was talking to a friend after coming home from Vancouver and told her that one of the most difficult things about this epilepsy thing is that up until now, for all intents and purposes, Jade was a perfect little girl. Little kids don’t act up on purpose, they just don’t know any better. And despite there having been hard times and long sleepless months, she’s such a happy, easy-going, social child that it was easy to shrug those times off as normal developmental things parents have to go through.
But now that she has epilepsy, it’s like she’s… broken.
Suddenly, I have a child who has special needs. It’s not quite as hard as having a newborn again, but going back to the inflexible sleep schedule and the constant vigilance, well, it is a step back. Assumptions and expectations for her future (will she grow out of it? will she have trouble learning?) are suddenly in question.
Today was kind of a rough day; Jade was emotional, had more seizures than she’s had for the last three days, was on her second full day of potty training (6 puddles of pee, 1 pantload of poo, 0 drops of toddler sewage actually in the potty) and she also had a couple of accidents (not the potty-training kind) that made me cringe. After lunch, she somehow pulled a dining room chair over onto herself, tipping her backwards. It would have been bad enough to have her land on the floor with a chair on top of her, but she also hit the back of her head on the wooden rocking horse when she landed. Then, after supper, she asked for a bottle, which I gave her. Thank God I gave her a plastic one instead of glass. As we headed over to the living room couch to cuddle, she had a short but very strong seizure that caused her arms to jerk forward, flinging the bottle away from her. She lost her balance while the bottle bounced off the wall and came to rest exactly where her forehead was on its way to meet the floor. If she doesn’t end up with a black eye, she’ll at least have a lovely big bump on her eyebrow and nosebridge to show off for a week or so.
I might just add here that I am paranoid about head injuries (besides, God knows Jade’s brain doesn’t need any more trauma right now). I grew up terrified of head injuries. I have an uncle who, as a small child, was thrown off a tricycle by a bully; the blow to his head apparently caused some brain damage because learning became a much bigger struggle for him ever after. Perhaps it was this that made my mom extra vigilant, but her frequent warnings made me scared to have even a little bump to the head, lest I lose a few IQ points. In our house, we were warned to never land on our heels when jumping, because the jarring would travel up our spines and could hurt our brains; I have no idea if there’s any truth in this, but I cringe whenever I see anyone land this way.
Anyway, it was a tough day, and I decided it was a good time to make a phone call for support. My friend Yukon Jen put me in touch with another woman whose daughter started having seizures about 18 months ago. It was great to connect with her, although we had to keep our chat rather brief because that very daughter was asking her to do some crafts with her. Ann was very comforting in some ways, but our conversation also made me realize that in many ways I’ve been waiting for this all to be over sometime soon, even though I know better. That’s probably one reason today was so hard on me; after three good days with very few seizures, going backwards was traumatic. But that’s how this thing goes.
Another thing Ann said was that having a child with seizures changes a lot of expectations and that she’d had to grieve over that, and maybe even still is grieving. That struck a chord with me because even though I’d told my friend that it felt like Jade was “broken”, I hadn’t thought of it as grieving something I’d lost. The frustrations of the day came to a head and I had a good ol’ cry after we hung up.
I know I need to keep things in perspective, that there are worse things that could happen. Ann also said that even though it’s hard to have a daughter with epilepsy, she’s glad that her daughter is with her and not someone else, because she can take care of her. Michael said something similar last week. At least Jade has two strong parents who can lean on each other. Even if one is a big cry-baby after the baby goes to bed.
