Allison Quinn is writing a series of columns about her son’s treatment for a rare disease.
“How are you coping?” is a thrillingly cathartic opportunity for those willing to answer it honestly. The world might be a better place, in fact, if more people saw the enticing detonator tucked away in that otherwise cliched question and pushed it.
Up until recently, when I found myself violently expelled from the world that normal people inhabit into the emotional wasteland of terminally ill children, I answered that question politely. How one is expected to answer: Direct and to the point. No psychological cliffhangers. No explosions.
But I grew weary of this empty response as my hair began to turn white in the first few weeks of our medical nightmare. It felt like such a shame to leave so much out.
So, let’s try it again: What if I told you I’ve been traumatizing a toddler in my down time?
It’s only a temporary traumatization, to be fair. The toddler likely won’t remember. And if they did, I’m sure they would forgive. There are only so many ways to cope when your 8-year-old child is battling a rare disease—adrenoleukodystrophy—and you find yourself living inside a home full of dozens of other sick children, Ronald McDonald around every corner, grinning and begging someone, anyone, to sit with him. (For the uninitiated: Ronald McDonald House Charities provides accommodations and food, often free of charge, to families with children battling life-threatening illnesses.)
There are even fewer ways to cope when that same child, recovering from a bone marrow transplant, contracts a hellish diarrhea plague that necessitates total isolation. So for the time being, the only contact my son Aedrik and I have with other human beings is through the ceiling. There is a toddler up there, in the room above ours, whose near-24/7 freakouts serve as a sort of surrogate for our own existential despair. We alternate between cheering him on as he smashes furniture and winding him up when he’s suspiciously quiet. Which is apparently relatively easy to do.
“Do you think he can hear us through the heating vent?” Aedrik wondered after our upstairs friend finished a tantrum.
“Hey! Come here!” my son sang out into the vent.
It wasn’t long before a rapid staccato of thunderous stomps approached.
“Pssst! Hey,” Aedrik whisper-yelled.
A heavy object fell to the floor above us in tacit acknowledgement. We then heard a hesitant, “Hello?”
This is where my son went off script, grunting, for reasons unknown, in a deep Southern drawl: “It’s me, the devil. I live under you in hell.”
“Mommy!” the toddler yelled, more urgently now, pitter-pattering away to safety.
To further distract my son from these menacing hijinks, we tried making use of a piano situated just outside our room—when no one else was around to infect with our germs. It went well until he began incessantly playing the theme song to John Carpenter’s 1978 classic Halloween in the hopes that it would, as he put it, “freak out little kids.”
“I don’t think Ronald would approve,” I said.
There’s more still. At some point—I honestly don’t know how this happened—Aedrik discovered that the book I’ve been reading before bed each night is not a mystery novel, as he’d assumed, but a detailed history of botched executions from Medieval times until the modern day. Hey, everyone’s got different ways of coping, right? Don’t ask if you don’t want to know.
The stuff of nightmares? Not so for my child, who gleefully asked if we could “do re-enactments.” We could only really do the guillotine ones—and a few by electric chair; it’s harder than you’d think to simulate a hanging and we couldn’t find any container large enough to act out being boiled to death.
(“Just put me in the sink,” my son argued, but that would have been ridiculous! I have to draw the line somewhere.)
It’s probably for the best that we are temporarily confined to our room. The lapsed Catholic in me can’t help but think of it as some kind of penance for the failed rebellion Aedrik fomented in the children’s play castle.
Just before our period of quarantine, a 4-year-old boy fell under my son’s influence near the site of that futile insurrection. The boy was admiring his new plastic trumpet when my son sauntered up behind him and, this time in what sounded like an Australian accent, whispered in his ear, “Throw it! Throw it now!” Following the orders of his elder, the boy did as he was told, giggling maniacally as his frustrated mother looked on and sighed.
“I didn’t think he’d actually do it,” my son said, shrugging.
I offered to buy the child a new instrument but his mother declined. So instead I said, “How are you coping?”
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