When Calvin was a baby, and after he weaned himself from nursing, he did a great job sleeping through the night. But we never took it for granted, knowing that a good thing is never guaranteed forever—that good things sometimes go bad.
Since Calvin started having seizures just before his second birthday, and with the advent of having to dump various anticonvulsant medications down his throat, his restful nights went out the window and continued to get worse.
Every night for the past several years I get up at least twice to look in on my boy. Usually it’s more like three to five times and has been as many as a dozen. Last night it was about eight times. I check to make sure he is covered, I check to see if he wants water and, if he does, I reach down into his crib and lift his head while he drinks from a baby bottle. I do this to prevent ear infections from fluid entering his Eustachian tubes. I flip him onto his left side when I think he has a painful or uncomfortable burp and I flip him on his right side if I think he has gas to release. I turn and cover him when he's incessantly rubbing his head in his hands from which he's developed a quarter-sized bald spot just above his hairline that, thankfully, his mass of thick auburn hair covers. I lay him back down when he is standing and throwing his body against the crib side or kneeling and banging his head against it. Sometimes I have to change his diaper or give him acetaminophen suppositories if I think he has a headache. Mostly, though, when I hear him I check to make sure he isn’t having a seizure. I am Calvin’s dedicated night nurse.
My greatest fear with all of these nocturnal ups and downs is that I will become so weary that some night I’ll sleep through his convulsions and restricted breathing, that he’ll die in his sleep from a seizure that doesn’t stop until it stops him. It can happen, and in the world of epilepsy it’s not a rare event. It’s called sudden death in epilepsy (SUDEP.)
But somehow, the motherliness of my body allows me to sleep lightly, awaken easily and almost always fall instantly back to sleep the moment my head touches the pillow. I guess I’ve hit some sort of stride or equilibrium with(out) sleep. And the occasional daytime nap doesn’t hurt.
Since Calvin started having seizures just before his second birthday, and with the advent of having to dump various anticonvulsant medications down his throat, his restful nights went out the window and continued to get worse.
Every night for the past several years I get up at least twice to look in on my boy. Usually it’s more like three to five times and has been as many as a dozen. Last night it was about eight times. I check to make sure he is covered, I check to see if he wants water and, if he does, I reach down into his crib and lift his head while he drinks from a baby bottle. I do this to prevent ear infections from fluid entering his Eustachian tubes. I flip him onto his left side when I think he has a painful or uncomfortable burp and I flip him on his right side if I think he has gas to release. I turn and cover him when he's incessantly rubbing his head in his hands from which he's developed a quarter-sized bald spot just above his hairline that, thankfully, his mass of thick auburn hair covers. I lay him back down when he is standing and throwing his body against the crib side or kneeling and banging his head against it. Sometimes I have to change his diaper or give him acetaminophen suppositories if I think he has a headache. Mostly, though, when I hear him I check to make sure he isn’t having a seizure. I am Calvin’s dedicated night nurse.
My greatest fear with all of these nocturnal ups and downs is that I will become so weary that some night I’ll sleep through his convulsions and restricted breathing, that he’ll die in his sleep from a seizure that doesn’t stop until it stops him. It can happen, and in the world of epilepsy it’s not a rare event. It’s called sudden death in epilepsy (SUDEP.)
But somehow, the motherliness of my body allows me to sleep lightly, awaken easily and almost always fall instantly back to sleep the moment my head touches the pillow. I guess I’ve hit some sort of stride or equilibrium with(out) sleep. And the occasional daytime nap doesn’t hurt.
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| photo by Michael Kolster |
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