hell and angels

i don't believe in religion or in its hell or angels. to me, that hell is an absurd, fantastical, primitive invention, a relic of the dark ages. but hell on earth is real. i know, because it exists in the misery of my kid, in the pain and panic attacks he has that sometimes last for hours and deprive everyone of sleep. it's in the way he thrashes, cries and writhes in bed. it's in the agony and sadness etched into his soft forehead. it's in the way that so few things help my sweet kid when he's like this. 

my perdition is in witnessing, in my helplessness and incomprehension, my inability to exactly understand the nature of his hurting, the meaning of his expressions. he has no words, only coos or hums. at hellish times, he shrieks and moans. it's this mother's agony to observe.

so, too, i feel the punishment of eighteen and a half years of "raising" an infant-toddler-teen. it's a job that doesn't come with vacations or weekends. all too often it is tedious and grueling. it requires i be on duty, or on call, around the clock every day of every month of every year. to keep him safe and warm and clothed, clean and dry and fed and loved. to keep him out of harm's way like any parent would. to comfort him when he's out of sorts. to give him medicine even when i can't know for sure his misery's source.

while running the other day, i heard a car skid to a stop. my heart skipped a beat thinking it was my kid—the rubber squealed as if it were his seizure-shriek. but it was just the sounds of the street. years ago, when we often called 911 for calvin's stubborn fits—one so long we thought his body would give out—i used to run after ambulances. while walking the dog on campus, i'd sometimes hear sirens screaming past. i feared they were headed to our house for my boy. i'd chase them till they'd turn down different streets. it was a godawful—hellish—frightening, worrying feeling.

no amount of writing can sufficiently describe how heart-wrenchingly difficult this kind of caregiving is. this witnessing of my child's suffering. the feelings of guilt rising from punishing frustrations born from lack of sleep, getting smacked by his errant fingers and fists, listening to his tiresome and irritating bleating, coping with his poopy diapers and sopping bibs, watching him repeatedly seize. the hell i feel is in the most of it. what's the worst, though, is his frequent misery. a kind of hades i really hate, and from which it seems there's no escape.

and so, no, i don't believe in god's hell or angels. but if there were angels, my precious calvin—with his impish grin, little muscles, strong embraces, smooth skin, huge eyes, cute dimples, ecstatic smile when we kiss him, his deep-down goodness and sweet disposition (when he's feeling well)—would hands down take the cake. 

freedom to me

freedom to me is to dance with reckless abandon. freedom to me is a good night's sleep. it's a stroll by myself down the street. it's the time and space to think and read and write and dream.

freedom to me is to be understood. to get to know and embrace different people. freedom to me is a place to call my own, knowing it isn't really mine at all—the beach, a wooded trail, a back road, a nation.

freedom to me is a stint without my son having seizures. it's a walk down the block without him balking. it's a day when he's unencumbered by the miseries which tend to stalk him. it's a week without him moaning and shrieking.

freedom to me is sipping from a mug of coffee or glass of wine in the garden. it's listening to music as loud as i want. it's having a spouse who loves deeply my crazy notions, jokes and idiosyncrasies.

freedom to me is to offer a big table. it's the ability to give. freedom means everyone has healthcare, can afford to pay their bills, live in safe neighborhoods. freedom to me is a place where people can love who they love, worship how they please—or not worship at all—live under a roof, have plenty of food, clean water to drink, a good education, body autonomy, safe streets. freedom to me is easy access to voting. it's living in a system void of all religious dogma, and a world without its extremism, bloodshed and sanctimony (people don't need religion to be good and do the right thing.) freedom is the right to peacefully protest inequality, bigotry, oppression and autocracy. freedom to me means democracy.

freedom to me is a big sky stretching over an expanse of sea. a vista. a view to the horizon. clean air to breathe. the feel of wind in my hair, rain and mist on my cheeks. 

heartbreak kid

awake since quarter of three. worrying about my kid and the bad spell(s) he's been having. four grand mals in two weeks. two within four days. impossible behavior between seizures. bleating all goddamn weekend. no respite from his bellowing, even on our drives. his shrieks are unhinging. i roll up the windows so as not to startle bikers and runners passing by. nothing we do seems to help soothe or fix his affliction. it's relentlessly heart-rending. impossible to imagine how he feels inside.

i can't fall back to sleep. i get up for a drink and to pee. i see the waxing moon in the window frame. i understand its gravity as satellite and omen. i try hard not to resent the orb slung low in the southwestern sky. after all, it has no interests or designs. just glows there gorgeously, stars seemingly nearby.

slipping back under the covers, i worry about my sleeping child. i feel the seizure coming. like a perfect storm, everything has aligned—the blustery weather, the dramatic change in temperature and barometric pressure, the full moon just days ahead. the lord works in mysterious ways, some people claim, but only when it's well-timed. i don't find religion helpful or convincing. i feel the world would be better off without its sanctimony and warring. that's partly why i left it behind. calvin is living proof we don't need religion to be decent, loving and kind.

at three-thirty, the seizure hits my kid. at four o'clock, from the comfort of calvin's bed i hear a cardinal's first chirps. sunup is imminent. i stroke my son's head. in the dark, i picture him—his creamy skin, auburn locks, huge blue eyes with dabs of amber, noble nose, full lips, straight white teeth, slender frame, broad shoulders, sturdy back, flat tummy, little muscley pecs. i let my imagination wander—if not for calvin's brain anomaly causing his limited vision, wordlessness, awkward manner, sounds and gait, relentless seizures and side effects, calvin might have been so many things. if events had been different, he might have been a talented athlete. he has it in him somewhere. if things were different, he might've been a good student, artist, helper, activist, advocate, friend. no doubt he would have been quite the looker in the way of ordinary kids. my calvin might've been a heartbreaker. right then i stop imagining and realize—he already is.

one such day a year ago

in the absence of words

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: