1. Englund, Jennifer K. MSEd


A child's chronic illness may be impossible to control, but there's still a choice to make.


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It begins with a gurgle from deep in Daney's throat: low, primal, guttural. In the next few seconds, her back will arch and her palms will turn up. Her 10-year-old self will twitch, then tremble, like she's being electrocuted-and in a way, she is.

Figure. Illustration... - Click to enlarge in new windowFigure. Illustration by Janet Hamlin.

Daney can't stop the seizures. I can't stop them. The only thing to do is to wait them out. To hope she does come out, to pray that if she does, she'll be the same girl who liked setting up her dollhouse, reading Nancy Drew books, and taking long walks.


After 116 seconds, the gurgles and trembling subside. My lap becomes wet from Daney's full surrender. Then, the worst part: Daney gasps laboriously for one breath. Her stomach draws in sharply and her ribs jut out. Back still arched, eyes still closed, my daughter lies in my arms-not moving, not breathing.


I wonder: Is this the last breath Daney will take? Is she in pain? Brain damaged? And I start crying because I can't do a single thing to fix any of this. I cry because I can't protect her, because I spoke unkindly to her earlier in the day when she struggled with her math homework. Because once or twice a month, I get this opportunity to evaluate and correct myself, and I still blow it.


Daney [horizontal ellipsis] I try to say it gently, to hold back my urgency. I know she's already fighting with herself. She wants to come out of this; her body isn't letting her.


It's not fair this should happen to my girl. She's kind. She's bright. She plays plastic farm animals with her brothers. She bakes brownies, picks tulips, and sneaks love notes into her daddy's pockets.


This is how it will be, the neurologist has told me.


This is how it will be, my husband has said.


I've told myself I'll never get used to it. I haven't in three years and dozens of grand mal seizures.


In Daney's most terrible cluster of seizures, I held onto my daughter. While she lost herself, I got lost, too, in ED visits, CT scans, ambulance rides, EEGs. I didn't go to coffee with my friends. I didn't return phone calls. I moved Daney's bed into my room, and took her to work at the college with me. I gave up sleep, waiting vigilantly for the sign of a seizure, but also worrying at the silence. I ate little, and exercised less, and rarely played Legos with my boys. I was afraid for Daney, but also for myself. Would something happen where I'd have to take care of her forever? What would that mean to my future, to my fulfillment? If I lost her, how would I survive?


But after that terrible cluster, something happened: an ornery little bee stung the bottom of Daney's foot. And for three nights in a row, my girl was up, complaining and icing and hobbling around. She'd survived more than 20 violent seizures by that time. But this bump was making her crazy.


As I watched Daney stick her foot under the faucet at 2 AM, I suddenly realized that Daney had never whined, not once, about having epilepsy. Here was an adolescent girl who'd lain in a pool of drool and urine after a seizure, gone to the ED in nothing but frog panties. She'd missed school, couldn't go on all-day field trips or down the high slide or on sleepovers.


And I hadn't been able fix any of that. But Daney had never expected me to. Maybe my aching shoulders, constant headaches, and memory lapses were showing me that the neurologist and my husband had been right: that this was how it was going to be. That all I could do was to accept my daughter's epilepsy, to live with it-just like Daney did.


It's been three years now since the diagnosis, and Daney's seizures still come regularly; they will for a long time. Though I sometimes fight against accepting them as a normal part of my family's life, I've told myself that I can choose to worry, to wait, and to watch. Or I can know that I'm terrified, yes, and sad and incredibly sorry, but that that isn't going to make any of this better. I can choose to do yoga and have lunch with friends and engage my classes in lively discussions.


So now, as Daney lies in my lap, her chest finally falling then rising, I'm relieved-for her, for me. Her epilepsy and I may never be in complete harmony, but certain truths have gradually emerged: that although the seizures begin with a gurgle, there's no way to know how they'll end. That while Daney's disease has changed me, she has taught me how to live with it. That when the worry and the waiting and the seizures are stripped away, my daughter is right there-drawing faeries, making mud cakes, singing sweetly.