Yesterday tore me apart. Calvin suffered seizures all day long, including two grand mals and as many administrations of rectal Valium. One dose was during a deep partial seizure that lasted long enough for Calvin’s face to begin turning blue, causing me to imagine what it might be like if Calvin died right there on the spot.
His second grand mal came on while Michael and I were changing a poopy diaper. Our boy’s body stiffened, his legs becoming rigid and twisted like drift wood. When he began convulsing I was able to insert the rectal gel and the seizure stopped soon after. We lifted Calvin’s limp body—I thought again about his death—onto the couch with Michael where they slept for the good part of an hour, Calvin’s eyes, at times, half mast. At their feet, perched on the arm of the couch, I cried, weary and fearful of what so many seizures and drugs might do to my child.
Last night I slept with Calvin, woke when he did, changed a wet diaper, gave him the water which he had refused most of the day, gave him an extra Keppra at midnight and extra cannabis oil at ten and two. At times I felt feverish and dizzy, a case of mild and temporary vertigo still vexing me some nights.
My life must be out of balance, I thought, remembering what a doctor had told me the first time I experienced vertigo after having moved from San Francisco to Maine.
As I dozed off to sleep with Calvin’s arms around my neck, I wondered how my life might be out of balance (save raising a legally blind, non-verbal, incontinent, severely disabled child with intractable epilepsy who is the source of great angst and loss of sleep). After all, I’m grateful to have an amazing husband, a cozy home, a beautiful garden, an incredible group of friends, a supportive community and a boy who is brimming with love and affection. And, except for the challenges of being a woman living in a patriarchy, as a white person I am not oppressed. Lying there, I finally realized that a good part of the reason I feel so out of balance is political in nature, fearing the people in this country will lose many of the civil rights and liberties they have worked so hard to get.
Many of you may not know that the first of Hitler's victims were the infirm and the disabled. Yep, before rounding up and exterminating the Jews, Hitler and his band of merry sadofascists came for the disabled because they were thought a stain on his notion of a perfect race. The knowledge of this history is partly why I fear and loathe the current president, one who just put a White nationalist in one of the most powerful executive branch positions in this nation and one who has just barred good people because of their religion.
I’ve heard people insist that not all Trump supporters are racists or bigots. But, perhaps not all Hitler supporters were anti-Semites, and yet their naiveté and silence enabled an entire people's demise. I’ve heard Trump voters, in their support of a Muslim ban, claim that ours is, and must remain, a Christian nation, and yet the first invaders of this Native land were refugees fleeing religious persecution. I've heard scores of folks grouse about immigrants, and yet we are a nation of immigrants. I’ve heard Christians complain about God being missing in our public schools and government, and yet our founders felt the separation of church and state compelling. I’ve heard Christians’ contempt for diverse lifestyles, other religions and social programs to serve the needy, ones that Jesus would no doubt champion.
Perhaps in an attempt to bring balance back to a world with a fear-mongering despot at the helm, I say to those who deny his blatant bigotry, who, like him, pit one religion against another, who've succumbed to his charlatanry, that when it comes to justice—not only for my disabled son but for everyone who is marginalized, discriminated against and oppressed—I can never agree to disagree.
And so when I tuck Calvin in tonight, knowing he'll be safe and sound in this (regrettably) mostly straight White Christian hamlet, I'll hold in my heart those who have been, or will be—by a man who now has as much privilege and power and perhaps as little compassion as anyone in the world—torn apart.
His second grand mal came on while Michael and I were changing a poopy diaper. Our boy’s body stiffened, his legs becoming rigid and twisted like drift wood. When he began convulsing I was able to insert the rectal gel and the seizure stopped soon after. We lifted Calvin’s limp body—I thought again about his death—onto the couch with Michael where they slept for the good part of an hour, Calvin’s eyes, at times, half mast. At their feet, perched on the arm of the couch, I cried, weary and fearful of what so many seizures and drugs might do to my child.
Last night I slept with Calvin, woke when he did, changed a wet diaper, gave him the water which he had refused most of the day, gave him an extra Keppra at midnight and extra cannabis oil at ten and two. At times I felt feverish and dizzy, a case of mild and temporary vertigo still vexing me some nights.
My life must be out of balance, I thought, remembering what a doctor had told me the first time I experienced vertigo after having moved from San Francisco to Maine.
As I dozed off to sleep with Calvin’s arms around my neck, I wondered how my life might be out of balance (save raising a legally blind, non-verbal, incontinent, severely disabled child with intractable epilepsy who is the source of great angst and loss of sleep). After all, I’m grateful to have an amazing husband, a cozy home, a beautiful garden, an incredible group of friends, a supportive community and a boy who is brimming with love and affection. And, except for the challenges of being a woman living in a patriarchy, as a white person I am not oppressed. Lying there, I finally realized that a good part of the reason I feel so out of balance is political in nature, fearing the people in this country will lose many of the civil rights and liberties they have worked so hard to get.
Many of you may not know that the first of Hitler's victims were the infirm and the disabled. Yep, before rounding up and exterminating the Jews, Hitler and his band of merry sadofascists came for the disabled because they were thought a stain on his notion of a perfect race. The knowledge of this history is partly why I fear and loathe the current president, one who just put a White nationalist in one of the most powerful executive branch positions in this nation and one who has just barred good people because of their religion.
I’ve heard people insist that not all Trump supporters are racists or bigots. But, perhaps not all Hitler supporters were anti-Semites, and yet their naiveté and silence enabled an entire people's demise. I’ve heard Trump voters, in their support of a Muslim ban, claim that ours is, and must remain, a Christian nation, and yet the first invaders of this Native land were refugees fleeing religious persecution. I've heard scores of folks grouse about immigrants, and yet we are a nation of immigrants. I’ve heard Christians complain about God being missing in our public schools and government, and yet our founders felt the separation of church and state compelling. I’ve heard Christians’ contempt for diverse lifestyles, other religions and social programs to serve the needy, ones that Jesus would no doubt champion.
Perhaps in an attempt to bring balance back to a world with a fear-mongering despot at the helm, I say to those who deny his blatant bigotry, who, like him, pit one religion against another, who've succumbed to his charlatanry, that when it comes to justice—not only for my disabled son but for everyone who is marginalized, discriminated against and oppressed—I can never agree to disagree.
And so when I tuck Calvin in tonight, knowing he'll be safe and sound in this (regrettably) mostly straight White Christian hamlet, I'll hold in my heart those who have been, or will be—by a man who now has as much privilege and power and perhaps as little compassion as anyone in the world—torn apart.
This is such a profound post, Christy. I am going to share it. It's as if you've written my own heart.
ReplyDeleteThank you for your words. For your heart. For your profound love and your courage.
ReplyDeleteThank you for this. I am sending you much love.
ReplyDeletebeautiful. Thank you #resist
ReplyDeleteYou've said something important so well! Thanks for that....
ReplyDelete