I'm a helicopter mama, hovering over the natural disaster that is my non-verbal, incontinent, legally blind, autistic, cognitively and physically disabled, chronically ill son. Regular electric storms wreak havoc inside his skull causing him to writhe, twitch and convulse. Including this morning's, he's had nine grand mals this month. A recent electroencephalogram revealed brief, fifth-of-a-second epileptic discharges (not considered bona fide seizures) occurring—at their most frequent, during sleep—once or twice every ten seconds or so.
I'm a helicopter mama for which I sincerely apologize to no one. I know my son far better than anyone. He's on my radar all day and all night long—no further than arm's reach, mind's eye or earshot. I know when he is too warm, too cold, when he's having, just had, or needs a poop, even if he's not in the room. I know when he's apt to wet through, when he's hurting, feverish or seizing, mostly when others don't. On days when he's most vulnerable—in the wake of or lead-up to seizures—I know when a bath is likely too long or cool, or a walk in the sun with wind is too cold. Exposure to the elements can sometimes be stressful for kids like him. Because Calvin can't speak, I've had to become adept at walking in his shoes. I know when he's headed for a seizure hours before it occurs, can sense its omen's and feel in my gut the weight of possible triggers. And yet I find myself biting my lip, reluctant, though failing, to hover too much over others caring for him. Though I don't want to be, I'm good at stepping on toes.
Some say, you have to trust us. I respond, trust is something to be earned. Others say, I love your boy, then go on to verily neglect my son.
As other helicopter mamas of kids like mine will confirm, some folks—whether with empathy, ignorance, conceit, contempt or concern—make attempts to save us. We are told to relax, told not to worry, asked if we are tired (hahahaha!) and told to get some rest. We are told not to get upset in front of our kids lest our outward stress set off a fit. This unsought advice, though likely sincere but perhaps—even if subconsciously—self-serving, brings to mind a favorite quote from a song by Gang of Four:
Save me from the people who would save me from myself.
The rest of the lyric, which is deliciously irreverent and hilarious, but which I rarely quote because it it is also rude, goes:
They've got muscles for brains.*
Something helicopter mamas also hear often is, Everything will be fine.
One dear friend genuinely put it this way:
Calvin is not going to die (anytime soon) ... or maybe he will.
She did not sugarcoat. She did not dismiss. She spoke what I know to be the truth, which in a strange way gave me a sense of calm, knowing in that not-too-unlikely, worst-case scenario I'd have done everything humanly possible to keep Calvin safe. As a helicopter mama, I'd have done my very best.
*Yesterday I took this line out for fear it offended, but then I added it back in for full transparency and accountability, noting what I hadn't originally, which is that it is rude.
I'm a helicopter mama for which I sincerely apologize to no one. I know my son far better than anyone. He's on my radar all day and all night long—no further than arm's reach, mind's eye or earshot. I know when he is too warm, too cold, when he's having, just had, or needs a poop, even if he's not in the room. I know when he's apt to wet through, when he's hurting, feverish or seizing, mostly when others don't. On days when he's most vulnerable—in the wake of or lead-up to seizures—I know when a bath is likely too long or cool, or a walk in the sun with wind is too cold. Exposure to the elements can sometimes be stressful for kids like him. Because Calvin can't speak, I've had to become adept at walking in his shoes. I know when he's headed for a seizure hours before it occurs, can sense its omen's and feel in my gut the weight of possible triggers. And yet I find myself biting my lip, reluctant, though failing, to hover too much over others caring for him. Though I don't want to be, I'm good at stepping on toes.
Some say, you have to trust us. I respond, trust is something to be earned. Others say, I love your boy, then go on to verily neglect my son.
As other helicopter mamas of kids like mine will confirm, some folks—whether with empathy, ignorance, conceit, contempt or concern—make attempts to save us. We are told to relax, told not to worry, asked if we are tired (hahahaha!) and told to get some rest. We are told not to get upset in front of our kids lest our outward stress set off a fit. This unsought advice, though likely sincere but perhaps—even if subconsciously—self-serving, brings to mind a favorite quote from a song by Gang of Four:
Save me from the people who would save me from myself.
The rest of the lyric, which is deliciously irreverent and hilarious, but which I rarely quote because it it is also rude, goes:
They've got muscles for brains.*
Something helicopter mamas also hear often is, Everything will be fine.
One dear friend genuinely put it this way:
Calvin is not going to die (anytime soon) ... or maybe he will.
She did not sugarcoat. She did not dismiss. She spoke what I know to be the truth, which in a strange way gave me a sense of calm, knowing in that not-too-unlikely, worst-case scenario I'd have done everything humanly possible to keep Calvin safe. As a helicopter mama, I'd have done my very best.
*Yesterday I took this line out for fear it offended, but then I added it back in for full transparency and accountability, noting what I hadn't originally, which is that it is rude.
 |
| Photo by Michael Kolster |
Yup.
ReplyDeleteQ: Do E kids do well on an evening diet of mother's milk, to reduce / postpone seizures?
ReplyDeleteIt seems that perhaps, maybe, seizures come at a certain phase of the evening meal /digestion / fast at aroudn 4am and perhaps seizures are glucose sensitive. Plus metabolites of fatty MM are maybe good for growing kids.