Lately I've been bemoaning Calvin's lack of appetite and subsequent weight loss due to the side effects of one of his three antiepileptic drugs—the one that seems to be doing the best job at controlling his seizures. He weighs the same as he did nearly two years ago, though is much taller. Yesterday, I watched Michael walk Calvin around the perimeter of our friend's pool noting our son's knobby knees, painfully thin arms and legs and protruding ribs and spine.
Then, last night while rereading some of my earlier posts, I came across the one below and—considering my recent mindset over my thin child—I decided to repost it here:
Originally published 8.02.11.
Please share.
Then, last night while rereading some of my earlier posts, I came across the one below and—considering my recent mindset over my thin child—I decided to repost it here:
This morning, after I sent Calvin off to school on the short bus, I finished my bran flakes, folded a bit of laundry, put some dirty dishes into the dishwasher and brushed my teeth. I chose the orange pair of flip-flops, ran a brush through my hair, tied it back, wound a beaded bracelet around my wrist then grabbed my keys and wallet. As I was shutting the French doors on my way out I happened to glance down at the coffee table. On it was this morning’s copy of the New York Times. The cover photo gave me great pause.
The emaciated child in the photo is haunting. I read the first few lines to learn that the babe is just one of over five hundred thousand children starving in Somalia because of insurgents blocking their escape from a famine. I imagined this suffering child as my own child, as Calvin. The thought nearly brought me to my knees in grief.
I read no further as my mind soberly turned to the image of our comfortable home, the attractive addition we just finished on our kitchen, the lush trees, shrubs and flowers surrounding our house, which at times, when they are thirsty, I drench in water. I think of the list of groceries that I make every few days knowing reliably each item will be crossed off as I stroll down air-conditioned aisles plucking enormous fruits and pristine waxed vegetables off of the shelves.
And Calvin, little Calvin, who cannot talk, cannot walk by himself, remains in diapers and must cope with the scourge of epilepsy and a battery of potent drugs, is safe and fed, warm, dry and clothed, enjoys medical care, nurses and teachers. He isn’t thirsty or in want of shelter. He isn’t at risk of suffering and dying from cholera, malaria, dysentery or starvation. He—we—are so goddamn lucky it isn’t funny. Are we so deserving? I don't think so.
Driving home from the grocer, with a hatch full of bags boasting a myriad of fresh fruits, vegetables, meats, cheeses of the world, dog biscuits and pasteurized milk, I cried tears of sorrow for the children and tears of shame for the times I've complained about hunger, complained about costs, complained about traffic, complained about losing my wallet, complained about breaking a glass, complained about the weather.
And entering the cool house to unload my spoils I glanced in the front hall mirror at my clean face. I studied my features—both inside and out—that I share with the whole of humanity. I thought to myself, What makes me so special? That's just it—I'm not.
Originally published 8.02.11.
Please share.
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| Tyler Hicks/The New York Times |
There's something so darkly primitive about mothers and children and food. Sophie has always been thin -- too thin, just right thin, emaciated thin, etc. She eats like a grown man, though, so we know the calories going in are sufficient. I have always wondered whether her metabolism is messed up from the seizures or whether she expends so much energy with her daily seizures that she isn't able to properly store energy. In any case, most of the drugs caused anorexia with her -- so severe that we stopped nearly all of them. Have you ever considered weaning your guy from medication except, perhaps, the benzos? We did this many years ago and saw no ill effects --
ReplyDeleteI also wanted to mention ESES to you (status epilepticus in slow wave sleep) -- a rare epileptic syndrome that Sophie has had twice (when she was ten and then again a couple of years ago). It manifests for her in weight loss, a sort of wasting away. She was treated both times with IvIg and it resolved, but the periods she had it were some of the most devastating in her life --
ReplyDeletedear elizabeth,
ReplyDeletewe are considering weaning calvin slightly on his keppra since it is painfully clear he stopped eating well after we initiated that one. but perhaps might try eliminating the banzel. but before we do anything that might disrupt his improved seizure control i want to try using digestive enzymes first. oxooxoox