I had to crouch on my knees and watch another one yesterday, my eight-year-old child blue, crooked and trembling. They’re scary and always have me wondering if this might be the one that lands us in the hospital—again—or worse ... doesn’t stop.
I’d been settling into my evening back at home after a whirlwind trip to Boston for a CURE epilepsy benefit. Calvin had come home from school a total maniac—bouts of hysterical laughter, pulling my hair out in his fists, collapsing onto the floor at a whim, screeching at the top of his lungs, flailing his arms and standing up in his high chair and—a new warning sign—gazing up at the ceiling tracking some apparition invisible to me. I said to myself, he’s either got to poop or he’s gonna have a seizure tonight. He did both.
He had just finished eating a measly dinner during which he smacked my hand dislodging a spoonful of yogurt into the air. Luckily, Rudy licked it up off of the rug. Michael got Calvin out of his high chair to walk him around the house to coax out any painful burps. Neil Young’s new album—blaring into the sheetrock—eased my body and mind into a satisfying groove as I grated some cheddar for nachos. From the next room I thought I heard a strange squeak, so perked my ears to hear Michael calling me. As I rounded the corner they were both on the floor, Calvin’s head gently cradled in Michael’s hand, his face bluer than I’d seen it for some time. His fingers tinged purple as his arm, bent into a ghastly hook, pulsed with each convulsion. I kissed his face and told him it’d be over soon, as if my spoken words could train the seizure to obey.
After these seizures, when I put Calvin to bed and cover his little bird body that tries to suck its thumb, I wonder how we can live out our lives like this, wonder if they’ll ever cease, if I’ll ever be able to stop shoving chemicals down his throat every morning and every night, if I’ll ever be able to go to sleep without worrying, without having to listen to the baby monitor, if we’ll ever have our lives back which, almost seven years ago, were thieved by this monster, epilepsy.
And because I know so many people think—falsely—that epilepsy is a benign disorder where you take a pill and everything is okay, I share the video below. It may be difficult for some to watch, but it’s part of the story—a visual account—of the horrors of living with epilepsy. It must be exposed for what it is: a terrible condition where, for many, the present is punishing and the future dim. We need a cure and we need it now. Please, do what you can.
I’d been settling into my evening back at home after a whirlwind trip to Boston for a CURE epilepsy benefit. Calvin had come home from school a total maniac—bouts of hysterical laughter, pulling my hair out in his fists, collapsing onto the floor at a whim, screeching at the top of his lungs, flailing his arms and standing up in his high chair and—a new warning sign—gazing up at the ceiling tracking some apparition invisible to me. I said to myself, he’s either got to poop or he’s gonna have a seizure tonight. He did both.
He had just finished eating a measly dinner during which he smacked my hand dislodging a spoonful of yogurt into the air. Luckily, Rudy licked it up off of the rug. Michael got Calvin out of his high chair to walk him around the house to coax out any painful burps. Neil Young’s new album—blaring into the sheetrock—eased my body and mind into a satisfying groove as I grated some cheddar for nachos. From the next room I thought I heard a strange squeak, so perked my ears to hear Michael calling me. As I rounded the corner they were both on the floor, Calvin’s head gently cradled in Michael’s hand, his face bluer than I’d seen it for some time. His fingers tinged purple as his arm, bent into a ghastly hook, pulsed with each convulsion. I kissed his face and told him it’d be over soon, as if my spoken words could train the seizure to obey.
After these seizures, when I put Calvin to bed and cover his little bird body that tries to suck its thumb, I wonder how we can live out our lives like this, wonder if they’ll ever cease, if I’ll ever be able to stop shoving chemicals down his throat every morning and every night, if I’ll ever be able to go to sleep without worrying, without having to listen to the baby monitor, if we’ll ever have our lives back which, almost seven years ago, were thieved by this monster, epilepsy.
And because I know so many people think—falsely—that epilepsy is a benign disorder where you take a pill and everything is okay, I share the video below. It may be difficult for some to watch, but it’s part of the story—a visual account—of the horrors of living with epilepsy. It must be exposed for what it is: a terrible condition where, for many, the present is punishing and the future dim. We need a cure and we need it now. Please, do what you can.
Prior to meeting the family at the Cafe I didn't know much at all about epilepsy and I really still don't but I promise you one thing....that I will share your story as often as I can. No one should have to go through what you do and particularly that gorgeous son of yours. I pray a lot to St. Jude (saint of impossible causes) and you and your family are now included in those prayers.
ReplyDeleteSometimes the imminent approach of a seizure is worse than the seizure itself. When I felt slightly distanced from myself, the real equivalent of the metaphorical moments before a free fall until I could feel the free fall itself in my stomach and the world went away. Those kind of days that you describe became so commonplace that in high school, when I came home from school and my mom asked me how my day was, I'd respond that it was alright--it was a seizure-y kind of day. Then my mom had to stand by helplessly as I stared into hallucinations. When I was eating cookies with another friend with refractory epilepsy and our families over the summer, we were talking and I said casually, "It's really nice when you wake up and you haven't been seizing all night. It makes for a much better day." I didn't mean it facetiously or even ironically. The "seizure-y days" like the one you described were eight in a month. I feel those days when you write and know that I am right there with you in spirit.
ReplyDelete~Julianna