more of the same

I’m sitting here just before eight a.m., about an hour after having given Calvin his seizure meds. Three tiny white pills, two and a half salmon-colored tablets and two and a half powder blue ones go down the hatch. He mostly refuses his honeyed Greek yogurt lately so instead I sink the pills into a few bites of applesauce that I must coax into him. The damn drugs have totally messed with Calvin’s sense of taste, appetite or both, and he’s become a little string bean of a boy.

It’s five degrees outside, the sun just coming up over the tops of the trees, blobs of snow still perched like little white caps atop thin, curled-up rhododendron leaves. Calvin wouldn’t eat—again—so we put him in his johnny-jump-up to spin at his heart’s delight. I can see the drugs gradually wash over his brain turning him from a happy, almost manic, kid to one lost in some sort of pathetic oblivion, slouching floppily in his jumper. He stares at his hands or at the blue felt elephant rattle clipped to the jumper’s strap. Usually he likes rattling it though mostly he prefers chewing it until it’s sopping wet. Some mornings, like today, he appears mesmerized by the plaid patterned fabric of the plush toy, glaring at it in the grasp of his motionless, red hands. I often wonder if this behavior is some sort of seizure, so I rise up, go to him and try for a response. Sometimes he lifts his head with a faint smile while at others he keeps his chin buried in his blue velour robe as if unaware of my presence.

But then, especially when I put on Joni Mitchell’s Court and Spark, he perks up, spins, marches in place, yanks off his slippers and tries to eat them. “No slipper sandwich,” we say, whisking them out of his choppers hoping he hasn’t already taken a chunk out of the rubber sole or spongy upper. He rubs his forehead and eyes with the heel of his palms, kicks the wooden floor hard with his foot. Because of the drugs a constant film of drool coats his chapped chin, so much so that we must slather it in greasy Aquaphor and wrap his cute little bird neck in rolled-up cotton kerchiefs to keep his shirt from soaking.

I wonder what today has in store for us. More of the same, I think to myself, more monotonous traipsing around behind Calvin as he pads throughout the house in search of nothing, like some drugged up mouse in a maze trying in vain to find the cheese but never getting there, just retracing the same steps over and over without making progress toward the goal. If only he’d sit still and let me read him a book like he used to before these drugs. If only I didn’t have to tell him not to bite things every few minutes. If only he could walk around and play by himself so that I could attend to things like chores or reading or writing or cooking. Hell, I’d even be happy plunking him down in front of a television if he’d watch it, and I can’t stand TV.

Instead, we’ll be joined at the hip or, rather, shackled together like a couple of jailbirds marching endlessly around a walled-in cell block, no escape in sight. The only way out of this prison of seizures and mind-numbing drugs is a cure that, miserably, we simply don’t have.

Help bring us one step closer to a cure for epilepsy. During this brief campaign please give what you can to epilepsy research at http://www.calvinscure.com


  1. Oh, God.
    Bless your soul.
    I took care of Lisbeth by myself for the first 6 years of her illness before we finally got some in home nursing help. These were the years when Lisbeth was home from school more than 50 per cent of the time with seizures and days on end of postical fog which rendered her non-verbal and perseverating, maniacly running around bumping into walls, snapping and clapping, and sometimes up all night raging with episodes of postictal psychosis. I finally found out about The Katie Beckett Waiver after nearly losing my mind and refusing to get off the phone until SOMEONE could tell me where/how I could get some help. I had tried for years to get help - all we'd found up until that point was a couple of hours of respite care a month. There were days when Garry would be getting ready to go out the door and I would start to sob and say, "Don't leave me here with Lisbeth. I just can't do it anymore." And he'd say, "You have to do it - I have to go to work."
    When I finally found out about Katie Beckett, I asked the Department of Health and Human Services (as it was called then) "Why isn't this information made available to the public?? Why haven't any of Lisbeth's doctors known about this??? Why did I have to dig and delve to finally FIND this???" I was told, "The government does not want to advertise this information." This was in 1994.
    I have journals packed away full of entries that begin, "I feel so overwhelmed..." Christy, I'm glad that you have this blog for many reasons, the biggest/first and foremost of which is that it will probably keep you sane. xo

  2. not that i want others to suffer this pain and anguish but it is somehow comforting knowing i am not alone. xo

  3. yes, i feel the same way. other families and friends with "normal" children may be sympathetic but they really don't have a f-ing clue, and it can get pretty lonely. even the movies don't get it. years ago my daughter kaitlyn and i were rolling in the aisles laughing at the movie "the other sister" when the mother and father decide they just! can't! handle! living with their MR daughter, played (not very well in my opinion) by juliette lewis. her character has some little tantrum and the mother (diane keaton) with back of hand to forehead, nearly has a breakdown, as the father slugs back the booze...they send her away to be institutionalized. kait and i are like, WHAT?? for THAT??? !!! we're like, give us THAT girl!! WE'LL trade what she's got ANYDAY for what Lis has!!! i'm off track now, but the best performance of a child with disabilities that i've ever seen was leonardo dicaprio in "what's eating gilbert grape." stellar. great film, and it really nailed what goes on for siblings, too. thankyou for your courageous "raw bits" blog, christy. xo