One of my deepest fears is waking up to find my twelve-year-old son Calvin in his bed, lifeless. To some, it may seem a foolish or exaggerated worry, but to parents of children with epilepsy, particularly the kind Calvin suffers, which is resistant to medication, it's the sorry truth. In a given year, Calvin has a one in ten chance of meeting this end due to SUDEP: Sudden Unexpected Death in Epilepsy, which I liken to SIDS, but for people with epilepsy.
What might be more vexing and emotionally complicated, though, is the thought that our severely disabled, non-verbal boy will outlive us. Before the presidential election, I read an essay by the father of a boy with autism. He implored his readers not to vote for Trump whose policies, he feared, might threaten the services and health care protections enjoyed by their son. He went on to explain that he and his wife hoped that they would outlive their son by just one day because of their deep-seated angst that no one would be able to care for him in ways necessary for his health, happiness and well-being.
Daily, perhaps, I have similar worries. What if I have a fatal heart attack or stroke or fall down the stairs and break my neck, particularly if Calvin were with me. Who would care for my precarious child in the fragile moments after such a malady? Would he fall down the stairs trying to navigate them by himself? Would he get distracted by the sun streaming in through the window and let go of the handrail? Would he trip on the carpet and crash head first into the radiator? Would he accidentally turn on the stove, grab a knife by its blade, accidentally put a hand through a window? Imagining his confusion, want and need in such a scenario makes me quake.
My angst treads deeper, though.
Who would love my boy? Who would delight in hugging and kissing him and accepting his many embraces? Who would let him curl up in a fetal position beside them, his arms tightly clasped around their neck? Who would endure his drool on their hands and face, the grating sound of his oft grinding teeth, his shrieking, imbalance, sudden manic outbursts, seizures. Who would know what medicines to give him, how much of them and when? Who would make his cannabis oil? Who would know when he needs to be burped? Who would know just where he is most ticklish, if he is hungry, thirsty or needs to poop? Who would change his diapers? Who would be tender and loving to my growing baby of a boy?
Calvin is one of the reasons I continue to mourn the recent election and worry about the most vulnerable and identifiable who are left reeling in its wake—the Disabled, People of Color, immigrants, Latinos, LGBTQ people, Muslims, women. I’m baffled that so many Americans still don’t recognize their Straight White privilege, and I fear others who assert their White supremacy. I'm dismayed that the worry and anger some of us are feeling about the prospect of the impending administration—one that is shaping up to be quite ugly and menacing to so many—is contemptuously laughed off by the small-minded as mere childish tantrums of sore losers. The smug notion and its authors sicken me.
Many wise people have said that a nation is judged by the way it treats its most vulnerable; no doubt Mr. Trump and his goons are already taking us to a failing grade: F for fucked up, and I don't mean that lightly.
As a woman, who as a girl endured bullying and ridicule by boys and men, who as a teen survived sexual harassment by a strange young man, who as a woman was grabbed in the crotch by a passerby, and was again sexually harassed by a perverted White guy, who’s been neglected, interrupted, steamrolled, mistreated, scapegoated and glossed-over by White male relations and peers, as the friend of Black men and women who have been maligned and mistreated, and of Muslim women, Jewish, Latino and gay friends who are scared, and as the mother of a severely disabled child with a chronic illness who has at times been gawked at, scorned, sidelined, misunderstood and neglected by professionals, I worry about what is to come under Trump.
Like the prospect of my son's untimely death, my worry for the most vulnerable of us under the next administration is not foolish or exaggerated ... it's the sorry truth.
What might be more vexing and emotionally complicated, though, is the thought that our severely disabled, non-verbal boy will outlive us. Before the presidential election, I read an essay by the father of a boy with autism. He implored his readers not to vote for Trump whose policies, he feared, might threaten the services and health care protections enjoyed by their son. He went on to explain that he and his wife hoped that they would outlive their son by just one day because of their deep-seated angst that no one would be able to care for him in ways necessary for his health, happiness and well-being.
Daily, perhaps, I have similar worries. What if I have a fatal heart attack or stroke or fall down the stairs and break my neck, particularly if Calvin were with me. Who would care for my precarious child in the fragile moments after such a malady? Would he fall down the stairs trying to navigate them by himself? Would he get distracted by the sun streaming in through the window and let go of the handrail? Would he trip on the carpet and crash head first into the radiator? Would he accidentally turn on the stove, grab a knife by its blade, accidentally put a hand through a window? Imagining his confusion, want and need in such a scenario makes me quake.
My angst treads deeper, though.
Who would love my boy? Who would delight in hugging and kissing him and accepting his many embraces? Who would let him curl up in a fetal position beside them, his arms tightly clasped around their neck? Who would endure his drool on their hands and face, the grating sound of his oft grinding teeth, his shrieking, imbalance, sudden manic outbursts, seizures. Who would know what medicines to give him, how much of them and when? Who would make his cannabis oil? Who would know when he needs to be burped? Who would know just where he is most ticklish, if he is hungry, thirsty or needs to poop? Who would change his diapers? Who would be tender and loving to my growing baby of a boy?
Calvin is one of the reasons I continue to mourn the recent election and worry about the most vulnerable and identifiable who are left reeling in its wake—the Disabled, People of Color, immigrants, Latinos, LGBTQ people, Muslims, women. I’m baffled that so many Americans still don’t recognize their Straight White privilege, and I fear others who assert their White supremacy. I'm dismayed that the worry and anger some of us are feeling about the prospect of the impending administration—one that is shaping up to be quite ugly and menacing to so many—is contemptuously laughed off by the small-minded as mere childish tantrums of sore losers. The smug notion and its authors sicken me.
Many wise people have said that a nation is judged by the way it treats its most vulnerable; no doubt Mr. Trump and his goons are already taking us to a failing grade: F for fucked up, and I don't mean that lightly.
As a woman, who as a girl endured bullying and ridicule by boys and men, who as a teen survived sexual harassment by a strange young man, who as a woman was grabbed in the crotch by a passerby, and was again sexually harassed by a perverted White guy, who’s been neglected, interrupted, steamrolled, mistreated, scapegoated and glossed-over by White male relations and peers, as the friend of Black men and women who have been maligned and mistreated, and of Muslim women, Jewish, Latino and gay friends who are scared, and as the mother of a severely disabled child with a chronic illness who has at times been gawked at, scorned, sidelined, misunderstood and neglected by professionals, I worry about what is to come under Trump.
Like the prospect of my son's untimely death, my worry for the most vulnerable of us under the next administration is not foolish or exaggerated ... it's the sorry truth.
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| Photo by Michael Kolster |
I worry too...and understand your worries. We are in a deep, dark pickle, with acrid juices seeping into our veins. Living now requires faith, courage and doing the right thing, so we need to try. Fear be damned.
ReplyDeleteI too go through these possibilities everyday for thirteen years. I often think is dying at the same moment will be the only divine intervention. I feel your pain, fear and most of all love. I share the sadness Of literally and figuratively going nowhere. Most of all I too love my child as you love yours. Thirteen years of diapers, pacifier, laughter, severe disability and tears. Thank you for sharing I had no idea anyone else had so much on their mommy plate. Andrea
ReplyDeleteMy son is autistic. It is 3:21am. I am awake. You know all the reasons why.
ReplyDelete