When blowing out candles or spotting a falling star, I usually wish for Calvin's seizures to disappear. Michael, on the other hand, says that if he could change anything about Calvin, it would be that our boy could speak, mostly so that he could tell us the source of his misery. I can't disagree.
Last night, Calvin ramped up into a familiar and distressing episode in which he writhed in pain, screeching, moaning and screaming for nearly two hours. As soon as I saw it coming on, I gave him two pain medications, and when those didn't work I gave him extra homemade THCA cannabis oil. Taking turns in bed with him, Michael and I did our best to comfort and console him while trying not to get hurt ourselves. Calvin, who is nearly five feet tall, has no concept that his flailings can hurt others. To avoid getting bopped by an errant fist or poked by a rigid finger, I shut my eyes tightly, curled my lips over my teeth and pressed them together, then held my hands in front of my face attempting to absorb my boy's lunges and desperate, clawing embraces.
Ninety minutes into the episode, which I am fairly certain was a migraine brought on by a bout of latent benzodiazepine withdrawal, I was able to cradle him in my lap while resting my head against the end of his bed. Ten minutes after giving him the THCA, he fell asleep with his arms above his head wrapped loosely around my neck.
Afraid to move lest I wake my boy, I laid in the awkward position for an hour. There, in the silence of darkness, I thought about the film Michael and I had just finished watching, Eat That Question: Frank Zappa in His Own Words. In the film, which features excerpts from interviews with the prolific composer-musician-entertainer, Zappa muses on freedom and free-thinking. Some of the things he said struck a chord with me:
"I hate to see anybody with a closed mind, on any topic."
"Any sort of political ideology that doesn't allow for the rights, and doesn't take into consideration the differences that people have, is wrong."
I thought about Calvin and his inability to access in-person or remote learning during this pandemic. I thought about disabled Americans in wheelchairs who, for instance, still don't have equal access to train and air travel. I thought about how the LGBTQI+ community is treated by this administration and others in this nation, and how Blacks, Indigenous, Latinos, immigrants, refugees, and Muslims are treated on the whole. Zappa went on to speak about morality in a way that, as a non-religious person myself, deeply resonated with me:
"When you have a government that prefers a certain moral code derived from a certain religion, and that moral code turns into legislation to suit one certain religious point of view ... and if that code happens to be very, very right-wing ... well, then [whoever opposes it] is [considered] an anarchist."
One panelist challenged him on this assertion by saying, "Every form of government is based on some kind of morality, Frank."
In clarifying, Zappa replied, "Morality in terms of behavior, not in terms of theology."
Zappa's response had made me smile.
While still in my embrace, I mused on Calvin, a boy who is incapable of pondering any god or subscribing to any religious dogma, and yet is the purest being I know. He has no words to pray, no aberrant behavior which could be considered sinful. He can't hope for or contemplate salvation, or wish on a star. I thought about the righteous, honest, loving, accepting, charitable people I know who are not religious, then contrasted them in my head to some of the hideous, bigoted, greedy, deceitful folks I know of who insist on calling themselves Christians.
As I began dozing off, I went back to wishing Calvin had the words to tell us what is wrong. If only he could express himself so we could better help him. Despite that disadvantage—or perhaps owing to it—at that moment I felt grateful, as his mother, to be able to care for him from a gut-instinct, cellular level unlike anyone else can or ever could. I keep my mind open to what Calvin's presence affords me to see and learn about the world. He informs and shapes my views on otherness, bigotry, freedom of movement and speech or—as too many in this straight, White, Christian, patriarchy experience—lack thereof. Thank goodness for other strong voices which are resistant to White nostalgia, chauvinism and puritanism, and are fighting to bring about change.
Slipping back into bed with Michael, before drifting off to sleep, I imagined my favorite of Zappa songs—the wildly irreverent ones, the zany ones, the impossibly complex and bluesy ones—in particular one called Watermelon and Easter Hay. The song is gorgeous and, like Calvin, it doesn't have any words.
Turn it up, close your eyes and have a listen ... and maybe even weep:
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