visible differences

When I got up last night to check on Calvin around eleven, I looked out the window and saw Orion low in the sky, his toe touching the tops of the trees in my friend Woody's yard. I used to toy with envisioning Orion, a mythological Greek hunter with a shield and sword, as a protector of children like Calvin. But those kinds of imaginations are inventions with no agency. Now I see Orion for what it is: a beautiful and familiar constellation in a vast, enigmatic, indifferent yet magnificent universe.

Shortly after I fell back to sleep I heard Calvin shriek. I got to him quickly as I could and held him as he seized. When it was over, I gave him some extra homemade THCA cannabis oil, syringing it bit by bit into the inside pocket of his cheek so he wouldn't choke. Then, I crawled into bed with him. His heart was pounding so hard it felt like it was bulging between his ribs. Thankfully, within twenty minutes it had calmed, and he slept peacefully.

I laid awake for awhile, feeling him breathing. I thought about all that has changed in the past year or so. Calvin doesn't rouse in a panic in the wake of his grand mals anymore. He used to regularly spring up about thirty minutes after his fits and spend the next several hours perseverating—hyperventilating, finger snapping, humming, pressing his eyes and incessantly patting his bed—all the while his heart racing. Now, he rarely, if ever, does any of it.

And there are other visible differences in my kid. He hasn't had a focal seizure since the end of November, but he's had more back-to-back grand mals of late. His behavior—on less Keppra, and two-plus years having passed since his last dose of benzodiazepine—is way better. He's calmer, more focused, cuddlier, more compliant. He goes to bed a bit faster on most nights and sleeps better, generally. He can get into the car nearly by himself now. He's staying at the table more patiently when fed. More often, he sits in our laps longer, and sometimes lets us read to him.

After awhile, I got back into my own bed and fell asleep again. A few hours later, however, and despite the extra THCA oil that I'd given him, Calvin had a second grand mal. Again, I held him as he seized and slept with him when it was over. At four o'clock he arose, sat up and wouldn't settle. Non-verbal, my kid is as enigmatic as the universe. So as an experiment, I asked him if he had a wet diaper. He was silent, but rubbed the side of his head. I asked him a second time and waited for a response. Again, he rubbed his head. Then I asked him if his head hurt, and he went, "Unn," so I gave him an ibuprofen and a few gulps of water from his sippy-cup, plus his morning Keppra, with the hope of preventing a third seizure. From then on he slept.

I used the bathroom one more time before retiring to my bed. When I looked out the window the sky was visibly different. Orion appeared much smaller and had sunk halfway into the horizon. In its place was another constellation, unfamiliar to me, though bright and bold and beautiful, and just as magnificent and indifferent.

Photo by P-M Heden

things

it's been too long. time to check in. calvin went nine days between seizures. then he had grand mals the past two days, each at four o'clock in the morning. thankfully, we haven't seen any focal seizures in two-plus months. he's almost off of cbd oil. once we eliminate it we'll hold steady for a few weeks. might reintroduce it, try a new drug or not change anything at all for a while. behaviorally, he seems to do so much better on less pharmaceuticals. i'm still making his thca cannabis oil. everyone's sleep has been better lately, too, except for getting up in the middle of the night to tend to him when he is seizing, five or six times every month, or so.

zero degrees this morning, though the sun feels good on my back and in my bones. thirty-nine degrees tomorrow. eating ice cream lately as if it were summer. blood pressure is good. feeling healthy. spring is coming. days are getting longer and the quality of light in late afternoon is promising. unfortunately there is still snow and ice on the ground. smellie is still a little gimpy, though the anti-inflammatory seems to be helping. my friend is in hospice now.

leaning hard for warren. russians are still meddling in our elections despite what the occupant says, and the false narrative he tries to spread. know your source and that it has integrity. don't believe everything you hear. look out for bots and trolls. count your blessings. children in venezuela and syria are starving and are targets of gangs and wars.

went to bed at seven-fifteen one night a week ago. finished there, there by tommy orange. now i'm reading jane eyre. i love the classics—fitzgerald, hemmingway, capote, shelley, steinbeck, nabokov, stowe. should carve out more day time for reading. been writing on my memoir again. wish calvin could read and write and draw.

while in bed next to him after his last seizure, a few times he stopped breathing for several seconds. i nudged him and whispered his name and he resumed. i've often thought it wouldn't be a bad way for him to go, but boy does it scare me when i can't hear his breathing and don't feel his chest rise and fall. i mean, how many seizures can a heart and mind take? i wonder what the hell we would do without this sweetheart of a boy. i wonder, despite all the good people in the world, how certain men in power can be so ruthless, deceitful, selfish and evil. perhaps as kids they were neglected or abused or had disgraceful, racist, greedy parents. and what becomes of their children, if they have any at all?

it has been wonderful having michael around a tiny bit more. he's been on leave from his college teaching, advising and committees this year. he still works his ass off in the studio and in the field taking pictures. more often he comes home a bit early to hang out with us before calvin goes to bed. he's super cute with our boy. all kissy-faced, cuddly and playful. did i mention what an amazing chef he is? we miss him when he's not at home.

resentment

To be honest, and thought it's an ugly emotion, there are times when I feel resentful—resentful of my disabled child, his neediness, his fleeting intensity, the way he disrupts my sleep and chaps my nerves. Though I'm mostly grateful, I'm sometimes resentful of my husband's freedom and frequent travel to faraway and exotic places which I long to revisit and explore. I'm resentful of this nation's so-called leader, his reckless policies and spineless lackeys. On days like this I resent the snow and the fact that the district called off school. I resent Maine winters, icy sidewalks, bad drivers, priggish individuals, ignorant fools. My weariness gets the best of me on days like these. No doubt you can tell.

Last night, Calvin went to sleep as soon as his head hit the pillow. Thankfully, Michael and I were able to finish our dinner while watching the first half of the film, Roma, basking in its gorgeousness. But just as we called it a night and crawled into bed, just as I was about to drift off, Calvin sat up and banged his head against the side of his bed and pounded his mattress repeatedly. In the space of half an hour, I laid him down for the one-billionth and one-billion-and-first, second and third time. I was so sleep deprived and vexed I could not contain the rounds of expletives rapid-firing from my mouth. These are the kinds of times when my resentments feel steroidal.

I have little doubt that the politics of the hour exacerbate my feelings of despair, frustration, and resentment. Certain circumstances bring irony into sharp relief, triggering some indignation, like when staunch opponents of Medicare For All must end up relying on fundraisers to cover their medical expenses, or when those with disabled children vote Red, going against their self-interests, or when people make the absurd and dangerous claim that Democrats want to destroy America, or when folks admonish decorated career diplomats who bravely and selflessly defend democracy.

Yes, when I'm exhausted I'm prone to feeling most resentful. I guess my guard is down. I resent the looks I get from strangers who don't understand the first thing about Calvin or what it's like taking care of his kind of child. I resent professionals of all ilks who think they know my son better than I do. I resent parents of typical children who show contempt for Special Education funding. I resent that there are really no local programs for kids like my boy. I resent the fact that some people malign me or play me for a fool. In the big picture, however, none of that really matters much to me. I know who I am, I know my tribulations, I'm okay with how I've learned to roll.

Today my eyes ache while feeling simultaneously swollen and hollow. My son is up to his manic screeching and antics. We're stuck indoors. The news out of Washington keeps getting worse. With little doubt things have not hit bottom considering the sycophantic actions of those emboldening the autocrat in the Oval Office.

Despite resentments, however, there is some welcoming news. Calvin is improving in myriad ways regarding his calmness, understanding, focus, expression, compliance, and overall sleep. He is having fewer seizures—virtually no focal ones—on far less medication. He has begun pooping on the potty after we give him a suppository, which translates into fewer dirty diapers. Though spring is still months away, we are headed in the right direction. Then, there's the excitement and hope of a sea change come November, after getting behind one of the wise, respectful, experienced, decent, Blue presidential candidates who have righteous policy agendas to help the middle class, students, the environment and the most vulnerable in out nation. The image of all these truths dissolves my bitter resentments in an instant, like the snow melting on a salted street in winter.

in the wake of ice storms

Last Friday's ice storm on my only child's sixteenth birthday reminded me of the day he was born. My water had broken at one o'clock in the morning. The doors to our mudroom and car were incased in ice. Michael punched them open, and we made our way along desolate streets to the emergency room of our local hospital. Shortly thereafter, we were transferred by ambulance to Maine Medical Center in Portland. After a lengthy pheresis during which my platelets were extracted to give to Calvin for his suspected brain bleeds, and during an emergency cesarean under general anesthesia, Calvin was born. Neither Michael nor I witnessed his birth because, since I was unconscious, Michael was not allowed in the operating room.

Upon his delivery, Calvin did not need the platelets, nor did he need brain surgery to install a shunt; spinal fluid was not backing up in his brain, so his enlarged lateral ventricles were stable. But he was six weeks premature and weighed less than five pounds. He was flaccid and had awful Apgar scores, had difficulty breathing and regulating his temperature, had dangerously rapid heart rate and respiration, and no suck-swallow reflex. He spent seven weeks in the hospital—half of which he boarded with me in a labor and delivery ward—before we were able to bring him home.

Every year for at least the last decade Calvin has gotten a hand-delivered, handmade birthday card from my friends' son, Felix, who was born in the room next to ours a few days before we were discharged from the hospital. Felix's card, and past ones from his sister, Zoe, who is away at college, tell me that Calvin is thought of and remembered, even when life itself seems to have neglected, sidelined and harmed him in so many ways. The gesture usually moves me to tears.

This morning, Calvin suffered one of thousands of seizures he's had since he was two years old. When he has a grand mal, I sleep next to him for at least an hour just to make sure he keeps breathing. People can die in the wake of seizures, and so I remain vigilant as possible for my son. As I rested my hand on his waist, I felt keenly aware of every moment from the past sixteen years—the pain, the sorrow, the grief, loss, despair, fear, doubt, struggle, sleep deprivation, fatigue. So, too, I felt the moments—however fleeting—of triumph, joy, hope, love, tenderness, understanding and even levity. Then I drifted off to sleep.

In the days after an ice storm, streets can be treacherously slick. Craggy slush impedes sidewalk progress. These icy-white tempests can lay waste the landscape, breaking branches and taking down power lines. But in their wake they reveal crystals which glow and glimmer like halos when the sun filters through the treetops. And sometimes, despite bad odds and weather, precious babies like Calvin make their way into the world and amaze us.

sweet sixteen

happy birthday, baby!

ridicule

When I attended elementary school in the late sixties and early seventies, children like my son Calvin were sequestered to a separate cinder block building across the parking lot. They rode the short bus. The rest of us kids rarely caught sight of them. Some students called them all the names you'd imagine. Today, my son spends most of his time in his high school's Life Skills (special ed) classroom at the end of the hall. He is seen in the corridors and cafeteria, though is understood by few. In part because he is nonverbal, most of his typical peers and their teachers cannot grasp how complex of a child he is. In this busy world, perhaps they haven't the time or inclination for true understanding. I wonder sometimes what disparaging remarks some students have made behind his back. Though I imagine most of his classmates are kind, no doubt there are a few who whisper insults and slurs, mocking his disability like a certain crude official who somehow got elected.

In what seems like a lifetime ago, last Sunday I tuned into part of the Super Bowl, watching first to see if cameras would capture any Kansas City Chiefs fans mocking the Native Americans whom their team is so regrettably and ignorantly named for. It's astounding that Indigenous people's caricatures are still being used as mascots, their cultures grotesquely stereotyped and dishonored in manners resembling blackface, as if the pillage and pilfering of their villages and land, and the rape, kidnapping and slaughter of their people wasn't enough. And though Native people publicly take offense at these mascots, righteously expressing their disapproval, Whites dig in and stand their ground, insisting the opposite is true, clinging by threads to their disrespectful fetishes. Although I saw no cameras panning across White faces swathed in paint and feathers, when I heard the crowd parody a Native chant, I cringed.

At halftime, Jennifer Lopez and Shakira electrified the field, singing and dancing—indeed celebrating women—surrounded by an army of dark-haired sisters in regalia, their bodies gorgeous and prancing to Latin American rhythms. Clad in sexy sequins and leather getups, they sang in English and Spanish, embraced a feathery American and Puerto Rican flag, parading their talents, strength and stamina. An all-female string section worked their bows in unison. Smiling widely, I got teary seeing so many women own center stage and make such powerful political statements. They celebrated Goddess and matriarchy, Puerto Rican and other Latin Americans and their music, with nods to various cultures peppered into their mastery. 

In an instant, however, some folks denounced the show as disgusting, crude and unfit for their children. What I saw was altogether different, even as I watched it a second time. I saw formidable women take agency, women who no doubt had total autonomy over their production. I saw girls singing, "Let's get loud! Ain't nobody gotta tell you what you gotta do!" I saw gifted women kicking (and shaking) ass, as if to say "kiss mine!" to the intolerant officials who disparage Americans of Color, block the entry of Muslims and Africans, denigrate and separate refugees from their families, putting their children in cages. 

Those who scorned the female performers were likely the same ones watching a field full of mostly-Black athletes like gladiators bash each-other's heads in, risking traumatic brain and other injuries. Throngs of White onlookers—coaches, managers, fans—stood or sat in the safety of the sidelines, bleachers and VIP boxes, drinking beer, chewing gum, cursing and applauding each vicious sack. Boys and girls were also watching the carnage, same as they do in video games, television, and movies.

The condemnation of the female performers reminded me of contemptuous folks who quietly chastise overweight people for wearing bikinis at the beach or pool. I was reminded of the folks who champion dress codes for girls for the so-called sake of preserving boys' precious educations. I was reminded how women and girls are told, tacitly or not, to keep our knees together, to behave, to be ladylike, to smile, to consent, to be quiet, modest, obedient, sedate, yielding, abiding, pretty and chaste rather than fierce, assertive, outspoken, strong, dominant, irreverent. Lastly, I considered how it might please some people if they never had to see kids and adults like my son Calvin drool and limp and writhe in public.

I know what it is to be ridiculed and shamed. As a rowdy tomboy, I was told to wear dresses and skirts. I was scorned for my stringy hair and inflamed acne, even by adults. I've been shamed for how I've looked (too boyish or too sexy), how I've acted (too serious or oversensitive), the friends I've kept and keep, whom I've loved, how I've dressed, and what I eat for breakfast or lunch. I've no doubt but that if Calvin were slightly more able to be independent and mainstreamed, he'd be at times bullied, ridiculed, shunned and shamed for how he looks, and sounds and walks and eats. Likewise, I wonder if the Angolan and Congolese refugees at his school are subject to similar abuse and chastisement by a handful of the most ignorant students and adults.

My best guess is that we've all been mocked, shamed and ridiculed, and have likewise been guilty of committing similar offenses. I too often fail miserably. What are the drivers of these kinds of castigations? I wager fear, ignorance and conceit. My boy Calvin is incapable of feeling these. As such, though he's understood by few, and cannot read or write or feed himself or speak, he is quite the teacher, a rare and pure reminder of how it's best to be.