I’m nearly batting a thousand these days. I can see the damn seizures coming a mile away, at least usually.
Yesterday was just like the day before. Calvin was hyperactive and screaming during lunch and laughing inappropriately after. He gets what I call “seizure breath.” So I watch him while he naps and just like in the bad old days, five or ten minutes after he falls asleep, thumb in his mouth, he wakes up. I have to pull his thumb out of his mouth so I can see his dusky blue lips, blotchy red face and wandering eyes, but I know. He struggles to jam the thumb back into his mouth by reflex but I need him to breath. It lasts almost a minute then, almost as if nothing happened, he’s sitting up and pulling himself into a stand. I lay him back down, cover him up and he goes right back to sleep, this time for almost an hour.
So, we will increase his newest seizure medicine—again. Cross our fingers—again. Hope for the best—again. His balance has been getting worse with each increase so he’s a bit of a drunken sailor—again. And worst of all, without a cure, it’s more likely than not he’ll have a seizure—again. And again. And again.
Just now, after writing those last words, Calvin in his johnny-jump-up listening to one of the songs on his favorite Joni Mitchell Court and Spark for the gazillionth time, her familiar voice sings “again and again, the same situation for so many years . . .” Now that’s what I call irony.
Yesterday was just like the day before. Calvin was hyperactive and screaming during lunch and laughing inappropriately after. He gets what I call “seizure breath.” So I watch him while he naps and just like in the bad old days, five or ten minutes after he falls asleep, thumb in his mouth, he wakes up. I have to pull his thumb out of his mouth so I can see his dusky blue lips, blotchy red face and wandering eyes, but I know. He struggles to jam the thumb back into his mouth by reflex but I need him to breath. It lasts almost a minute then, almost as if nothing happened, he’s sitting up and pulling himself into a stand. I lay him back down, cover him up and he goes right back to sleep, this time for almost an hour.
So, we will increase his newest seizure medicine—again. Cross our fingers—again. Hope for the best—again. His balance has been getting worse with each increase so he’s a bit of a drunken sailor—again. And worst of all, without a cure, it’s more likely than not he’ll have a seizure—again. And again. And again.
Just now, after writing those last words, Calvin in his johnny-jump-up listening to one of the songs on his favorite Joni Mitchell Court and Spark for the gazillionth time, her familiar voice sings “again and again, the same situation for so many years . . .” Now that’s what I call irony.
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| photo by Michael Kolster |
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