bittersweet again

Since my son’s birth ten years ago Halloween, my former favorite holiday, has soured into a bittersweet time of year. Though over the years I’ve had some fun dressing Calvin up in costumes—a pumpkin, a cowboy, a hippy chick, a clown, a manwitch—I’ve never taken Calvin trick-or-treating, never joined in our town’s Halloween parade, never taken him to a Halloween party. Photos on Facebook and the swarms of trick-or-treaters dressed in elaborate costumes knocking on my door make me swoon with adoration and sorrow. I have a love-hate relationship with the holiday remembering the ghosts of Halloween seizures past, some that put us in the hospital, others that sent me to the door with a bowl of candy and black tears running down my face. I recall the urgent and painful circumcision he had when he was two, meant to curb recurrent urinary tract infections that triggered his first seizures, and the nagging sense of loss over mothering a child with a chronic health condition which causes great pain and angst and limits all kinds of freedoms.

This year was no different as I watched my son spiral into his pre-seizure mania, a carbon copy performance of just seven days prior. As my mother-in-law and I doled out candy to the neighborhood munchkins, Calvin sat spinning in the middle of the floor, obsessed with his snapping fingers and oblivious to anything else. I wrote in my journal that day:

INTENSE. seizure coming. crazy, manic, hysterical. good walking. rash on chin. seizure breath. CRAZY BATH. FINGERING LIKE CRAZY. CRAZY @ DINNER. SEIZURE COMING.

I’d seen it on the horizon a few days prior when I'd logged in the journal, expect seizure within three days.

Halloween night was full of them. The second seizure, which was very convulsive, ripped me out of a deep and beautiful dream of a different time and place. The fit was likely followed by a handful of complex partial seizures which are difficult to discern, especially in the dark when I’m half asleep. All night long as I slept next to him, I was woken by the happy sounds of werewolves and goblins prowling down the street in front of our house while being tormented by my son's nightmarish seizures bubbling next to me in bed, all brought on because of a simple virus.

In searching for a photo to accompany this post, I came across many with Calvin in costume. In all but the ones in the years before the seizures and the drugs Calvin looks the same. His expression might be mistaken for a smile, but it is in fact a grimace. It is the look of having a headache or an upset stomach or of general malaise. The photos are bittersweet in that at first glance they look cute, but then the reality sinks in as a grave reminder of what is so grisly about a little kid who must endure this scary, relentless condition called epilepsy.

Calvin, Halloween 2009

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