It’s a Saturday night and I’m feeling frustrated, angry and sorry for myself. While other mothers might’ve slept in past six or taken their twelve and thirteen-year-old sons to hockey practice or out to breakfast or shopping for clothes, or perhaps sent them to a friend’s house to play, I took care of an agitated kid whose misery I couldn’t translate. I wrote in my daily "Calvin" journal:
*banging a ton *intense *hyper *very stubborn trying to walk him past Woody’s house *seizure breath *terrible job at grocer WORST BEHAVIOR IN A LONG TIME TODAY. exasperating. *warm red ears SUPER AGITATED *not eating or drinking much *grousing like something hurts ... feels like another seizure coming already
A few times I lost my patience, raising my voice at my howling kid, whose constant whining was getting under my skin.
By evening, a half hour or so after I gave Calvin his nighttime dose of benzodiazepine, he had calmed down some, and we’d put him in his bed to play with his toys for a bit while we fixed things for supper. When we went back upstairs to ready him for bed and to give him his last few meds, we found him sitting in his own shit, which had squished out of his diaper, up his back and inside his shirt, smeared onto his linens and onto some of his toys. And though the mess could have been much worse—and it has in the past—it still added to the weight of a miserable day.
Earlier, I had watched Calvin squirm in Michael’s arms, watched his pendulous eyes rhythmically shift and dart the way they're prone to do. I imagined what we would be doing had Calvin been born a typical child instead of one missing a bunch of the white matter in his brain, instead of suffering seizures, instead of being addicted to antiepileptic drugs that don't work to stop the fits. Perhaps he’d be helping me chop tomatoes and avocado for a salad, or maybe he’d be scrolling through some of his Dad’s new photographs. Maybe he’d be reclined in front of the fire reading a new book, or perhaps he'd be outside walking Nellie, or curled up on the couch doing some homework, or just hanging out telling us about his day. And, at bedtime, he’d get into his own pajamas and brush his own teeth and crawl into his regular old bed and pull the covers up all by himself.
Then he'd tell me with real words—the kind that would soak luxuriously under my skin—I love you Mom, good night, I'll see you in the morning.
*banging a ton *intense *hyper *very stubborn trying to walk him past Woody’s house *seizure breath *terrible job at grocer WORST BEHAVIOR IN A LONG TIME TODAY. exasperating. *warm red ears SUPER AGITATED *not eating or drinking much *grousing like something hurts ... feels like another seizure coming already
A few times I lost my patience, raising my voice at my howling kid, whose constant whining was getting under my skin.
By evening, a half hour or so after I gave Calvin his nighttime dose of benzodiazepine, he had calmed down some, and we’d put him in his bed to play with his toys for a bit while we fixed things for supper. When we went back upstairs to ready him for bed and to give him his last few meds, we found him sitting in his own shit, which had squished out of his diaper, up his back and inside his shirt, smeared onto his linens and onto some of his toys. And though the mess could have been much worse—and it has in the past—it still added to the weight of a miserable day.
Earlier, I had watched Calvin squirm in Michael’s arms, watched his pendulous eyes rhythmically shift and dart the way they're prone to do. I imagined what we would be doing had Calvin been born a typical child instead of one missing a bunch of the white matter in his brain, instead of suffering seizures, instead of being addicted to antiepileptic drugs that don't work to stop the fits. Perhaps he’d be helping me chop tomatoes and avocado for a salad, or maybe he’d be scrolling through some of his Dad’s new photographs. Maybe he’d be reclined in front of the fire reading a new book, or perhaps he'd be outside walking Nellie, or curled up on the couch doing some homework, or just hanging out telling us about his day. And, at bedtime, he’d get into his own pajamas and brush his own teeth and crawl into his regular old bed and pull the covers up all by himself.
Then he'd tell me with real words—the kind that would soak luxuriously under my skin—I love you Mom, good night, I'll see you in the morning.
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| Photo by Michael Kolster |
I hear you. I woke this morning to the sound of a seizure through the baby monitor that sits by my bed. I went in and comforted Sophie and then realized that she'd soaked, again, through her pajamas and the sheets and the mattress. Sigh. I had to change her limp body, strip the bed, etc. etc. etc. I don't know how we do this shit, but we do. I'm with you, sister. These beautiful kids whip our asses, but they elevate our souls.
ReplyDeleteChristy, thank you for sharing. it must be painful to deal with this, and thankfully you have the blessing of your amazing mind and words and your husband Michael to help along the way. you are doing a magnificent job in the face of much that is unknown. what might have been...
ReplyDelete