I’m angry. I’m worried. And I want to scream at someone, anyone. I want to shake my fists in the air and shout “FUCK YOU, EPILEPSY.” I want to point a finger and say it’s your fault, or maybe yours, or maybe you over there. But there’s no one to blame, not really. It’s just one of those things. Yeah. Fuck you.
What is one of those things? It’s watching your daughter’s husband carry her like an infant into the house, bearing her total weight in his arms, begging her to “hang on.”
It’s watching her three year-old squat down in front of her, staring at his unresponsive mommy, then look up and at me and his daddy and say, “Mommy dead?”
It’s watching Ava outside on the trampoline, not jumping, just sitting there with tears in her eyes, scared to go in the house.
It’s seeing your daughter finally come out of a grand mal in the Emergency Room, crying, and the first thing she says in a tiny, strained voice is “Ava’s party—I need to go to Ava’s party.”
It’s Ava, in her classroom at school on the day of her Easter party, worried why her mommy isn’t there yet.
It’s Landon being roused out of bed by his dad to come lay beside his mom when Allen leaves for work. Call 911, he’s instructed, if she starts seizing. He’s only 11. It’s a heavy burden for any kid but he’s the oldest.
It’s Ireland being clingy to mommy after a brief stay in the hospital.
It’s seeing pictures of Landon with his best friend and his family snowboarding and wishing it was you, his own family, that he was there with.
It’s having to ask for help from neighbors to get your kids back and forth to school, or can they hitch a ride with so-and-so to church, or maybe to the ballgame.
It’s looking into special phones that a four year-old like Ivy can learn to use to call 911 with a recorded message that says “mother with grand mal seizure, small children in house.”
It’s organizing the daily round of pills. She’s only 31.
It’s the unspoken fear of going anywhere, the what if...
It’s a disease, a condition, a whatever-the-hell-you-want-to-call-it. And it’s a thief. It’s robbing my daughter of memories she’ll never get back; it’s robbing her kids of mommy moments.
And that pisses me off. Fuck you, epilepsy. You’ve knocked us down a couple times, but we get right back up. And we’ll keep getting right back up because we will not be your victim. You will not win this war.