stay fearless

"Stay fearless," she said at the end of the interview. The words of Kathrine Switzer, the first woman to run as a numbered entry in the Boston Marathon, stuck in my head along with images of her being chased and shoved by a race official in an attempt to rip the pinned number off of her chest.

These days, especially since Calvin was born, I try to live by those words. I try to avoid fear-based decisions. If I let fear grip me I know I'll be paralyzed.

Wednesday, when Calvin woke, he wasn't quite himself. I considered giving him an extra Keppra to thwart any impending partial seizures, but I decided against it, not wanting him to be too drugged up. Regrettably, within an hour he suffered the dreaded seizure after having become increasingly irritable and out of sorts. Later, I was loathe to take him to the grocer, but I remembered those words—stay fearless—so I gathered him up and drove him to the store.

I never know how much to push Calvin beyond his comfort zone. He has rarely walked outside for more than a few blocks, particularly since last summer when he broke his foot and lost a lot of the progress he'd made. Every time I try to take him past Woody's house three doors down he has a tantrum and I never know if he is simply being stubborn or if there is a grand mal on the horizon. Other times, he is both wan and flushed, and I wonder if he is having some sort of mild seizure or if his complexion is an indication of an aura. Often, his balance and gait are excellent the day before a grand mal. All of these things were true on Wednesday, but I took him to the store regardless because it was only day five since his last grand mal and over two weeks since his last benzodiazepine reduction. More so, I thought to myself that if I don't venture out because of fearing a seizure or provoking one, we'd never go anywhere.

So we went. Calvin did great, walking well and being mostly compliant. The next morning he suffered a grand mal. We both survived.

Sadly, Calvin is having some kind of seizure several times a week these days, though thankfully his grand mals are still confined to the night. With regard to reducing the fits, I've still got a few options in my back pocket such as increasing the CBD or THCA cannabis oils or trying a maintenance dose of THC. I could stop the benzodiazepine wean, but that would constitute a fear-based decision that might not yield much of an improvement, plus we've seen his behavior improve immensely with each bit of benzo we remove.

So, I'll try to stay fearless in the face of seizures and drugs side-effects and the thought of losing my child. I'll keep pushing beyond my comfort zone, however little, and keep encouraging Calvin to step outside of his own. After all, this is our marathon. Though it is often painful and scary, we're in it to the finish, so we might as well try to shine.

Photo by Ann Anderson

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