Each new day is pretty much the same as the last, with only the slightest degree of nuance in mood and mobility, cognition and ability, our son Calvin, eleven, still a baby in a prepubescent little boy body.
Every day we wipe Calvin's bottom and change his diapers and chop his food and dispense his pills—carefully cutting some in half—and shake the bottle and draw up and syringe in his liquid meds. We pick him up from dropping and spot him going up and down the stairs and guide him into his chair and strap him in and spoon feed his meals and hear him grouse and cough and squeal and screech, watch him flail and flap, poke his eyes and finger snap. Every day we bounce and burp him on our knee and catch him from falling and worry and wonder what the hell, exactly, is troubling him because he can't say.
Every day we help Calvin don his shirt and we change his soaking kerchiefs and bibs and remind him not to bite the table or touch the pictures or eat the carpet or chew his shoe. Every day we help him get undressed and give him a bath and dry him off and put him into his jammies and squeeze him into his jumper and strap him in and monitor his bowels and check his balance and watch his gait and worry over his osteopenia, his seizures and his wicked benzodiazepine withdrawal. Every day he plays with the shutters and bites his plastic baby toys into ruins and flails his arms and laughs like a maniac and hums incessantly and rubs his eyes and covers his ears and stares at the sun—and its reflection in things—every goddamn chance he gets.
Like in the film, Groundhog Day—since Calvin’s epilepsy diagnosis nine years ago when the litany of drugs began—we’ve relived the same day over and over again, day after frigging day. In the scheme of things, and in that time, our boy has barely changed at all.
A new friend asked me how I deal with what I believe she meant was the sum total of the grief, the loss, the headache, the frustration of raising a severely disabled child, wondering if I had to take it year by year.
"I have to take it day by day," I told her, holding back my tears as best I could, trying to steady my tremble.
And as I sipped hot chai and nibbled blueberry bread I thought about Calvin's brain's mysterious missing white matter, his lack of language, his poor coordination—the fact that he can't even pull his covers up in bed. I considered his impossibly impaired vision, his protracted, nearly stagnant, development, his drugged-up, bizarre behaviors and habits and tics, which I'm beginning to doubt will ever subside. And I realized that my kid is not my kid and hasn't been since the seizures and the drugs began, and how easy he'd be to handle if not for the epilepsy, which eclipses all of his other disabilities combined. He's been ruined, he's been wrecked, and I can never get him back, not really.
But then I remembered my sweet boy and the hugs he likes to give and the cute giggles he makes and the way he crawls up behind me when I'm at my desk writing and grabs my shoulders and neck and hair to pull himself up and embrace me, and the way he's beginning to look into my eyes, and how he sits in my lap again, and the way he smiles that sometimes reminds me of my mother who just died and I realize, I think it's going to be okay.
And then I go home and Calvin comes off of the bus and he whines and balks and drools all over kingdom come, and I think of Groundhog Day—the utter sameness of it all—and I wonder if things will ever be any different.
Every day we wipe Calvin's bottom and change his diapers and chop his food and dispense his pills—carefully cutting some in half—and shake the bottle and draw up and syringe in his liquid meds. We pick him up from dropping and spot him going up and down the stairs and guide him into his chair and strap him in and spoon feed his meals and hear him grouse and cough and squeal and screech, watch him flail and flap, poke his eyes and finger snap. Every day we bounce and burp him on our knee and catch him from falling and worry and wonder what the hell, exactly, is troubling him because he can't say.
Every day we help Calvin don his shirt and we change his soaking kerchiefs and bibs and remind him not to bite the table or touch the pictures or eat the carpet or chew his shoe. Every day we help him get undressed and give him a bath and dry him off and put him into his jammies and squeeze him into his jumper and strap him in and monitor his bowels and check his balance and watch his gait and worry over his osteopenia, his seizures and his wicked benzodiazepine withdrawal. Every day he plays with the shutters and bites his plastic baby toys into ruins and flails his arms and laughs like a maniac and hums incessantly and rubs his eyes and covers his ears and stares at the sun—and its reflection in things—every goddamn chance he gets.
Like in the film, Groundhog Day—since Calvin’s epilepsy diagnosis nine years ago when the litany of drugs began—we’ve relived the same day over and over again, day after frigging day. In the scheme of things, and in that time, our boy has barely changed at all.
A new friend asked me how I deal with what I believe she meant was the sum total of the grief, the loss, the headache, the frustration of raising a severely disabled child, wondering if I had to take it year by year.
"I have to take it day by day," I told her, holding back my tears as best I could, trying to steady my tremble.
And as I sipped hot chai and nibbled blueberry bread I thought about Calvin's brain's mysterious missing white matter, his lack of language, his poor coordination—the fact that he can't even pull his covers up in bed. I considered his impossibly impaired vision, his protracted, nearly stagnant, development, his drugged-up, bizarre behaviors and habits and tics, which I'm beginning to doubt will ever subside. And I realized that my kid is not my kid and hasn't been since the seizures and the drugs began, and how easy he'd be to handle if not for the epilepsy, which eclipses all of his other disabilities combined. He's been ruined, he's been wrecked, and I can never get him back, not really.
But then I remembered my sweet boy and the hugs he likes to give and the cute giggles he makes and the way he crawls up behind me when I'm at my desk writing and grabs my shoulders and neck and hair to pull himself up and embrace me, and the way he's beginning to look into my eyes, and how he sits in my lap again, and the way he smiles that sometimes reminds me of my mother who just died and I realize, I think it's going to be okay.
And then I go home and Calvin comes off of the bus and he whines and balks and drools all over kingdom come, and I think of Groundhog Day—the utter sameness of it all—and I wonder if things will ever be any different.
I don't even low what to say. Hoping for enough moments of clarity, beauty, and joy to make your own groundhog day bearable.
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