twenty-twenty-one falls easy on the ears. the softness, in part, might be in its numerical oddness; evens have always felt hard-edged and unforgiving to me. in black jack, twenty-one is a lucky number. maybe this year will be a winning one, a year to celebrate and remember. with luck—and numbers—some of the conceited losers bent on greed and grift, apathy, deceit and bigotry will fade in the rearview mirror and become nothing more than a bunch of pathetic has-beens. maybe 2021 will shape into one of hope and light, unity, decency, honesty, selflessness and, perhaps most of all, justice.
as in every year, i hope for my son to outgrow his seizures. maybe this year will be the one. he's doing pretty well—seizing less, walking, sleeping and acting better, practicing using the potty and getting in and out of his bed with less help. despite the pandemic and its limitations, life is easier than when calvin was little, back when there was so much dread and angst, sleepless nights and weeping. he'll be seventeen in february; my body, heart and mind have felt every last minute of it. in our case, time has not flown by. but that too has its advantages.
michael has shoveled snow only once so far, and we've had two complete thaws. it's always good to see the green. hopefully it will be a mild winter. at the fields yesterday, i saw a blue heron flying low and graceful. i wonder why when i spot them they're always solo. when they take off, where do they go? a bunch of ducks paddle and squawk in a pond half iced-over. smellie would love to sink her teeth into those soft bodies. iridescent feathers everywhere. a chain-link fence keeps her from getting to them. they don't know how lucky they are.
it'll be forty years since i graduated high school. perhaps i can gather with some alumni to celebrate this summer. seattle is gorgeous june through september. i have so many loved ones living there—some from childhood, high school, college, plus a couple I met while living in san francisco.
the backyard garden is shaping up to be glorious. better than ever. the rhododendrons are encrusted with buds. the evergreen azaleas, whose buds appear later, show promise. as always, i have hope for an early spring. for this west-coast gal, spring—and 2021—can't come soon enough.
Yesterday morning, just before four o'clock, Calvin suffered his first seizure in twenty-two days—a recent record I owe to a slight increase in his THCA cannabis oil. When the fit was over, I crawled into bed with him to monitor his well-being.
For ninety minutes, while feeling Calvin's heartbeat and the rise and fall of his chest as he slept, I laid awake. I thought about having seen Jupiter and Saturn low in the sky, though not aligned. I lamented the coronavirus surge devastating our nation. I wondered about my death row pen pal who delighted in a pencil portrait I drew of him. Then, my mind settled on the film Michael and I had just watched, the 1938 production of Charles Dickens' classic A Christmas Carol—a version I don't remember having seen before. The holiday classic, which I'll soon be reading, is one I've long loved for its focus on gratitude, charity, brotherhood, community, and the secular traditions of the holiday—gathering with loved ones to share special food and drink.
Whenever I see any version of this film I think about Calvin—my own Tiny Tim—who is as sweet and pure as any child could be. What a remarkable boy he might have been (in the way of ordinary, healthy boys) if things hadn't gone wrong. I often wonder what the future holds for him. At times throughout the film I became weepy. Though I know the story well, one of the last scenes surprised me. After having been haunted by the three Spirits of Christmas, Ebenezer Scrooge makes an unannounced visit to the home of Bob Cratchit, the clerk he recently sacked. Upon the curmudgeon's arrival, Cratchit's wife hides in the closet. When she hears her children begin to shriek, fearing their ill-treatment by Scrooge, she rushes to save them. Bursting into the room, she finds her kids squealing with joy over the gifts Scrooge has bestowed upon them. Tears spilled from my eyes at the sight and sound of the ecstatic children; oh, how I wish Calvin could experience such things.
Alas, as of yet, there is no cure for my boy's seizures. No cure for his cerebral palsy. No cure for the enlarged lateral ventricles in his brain. No cure for his autism. No cure for his cerebral visual impairment. And so, unlike Tiny Tim, Calvin will never joyously slip-slide on a slope of ice with friends, stare wide-eyed at a roasted goose emerging from the oven, recognize and respond to his father's pride and despair, shriek with joy when opening a special gift. And though in this house we don't celebrate the birth of the baby Jesus, and despite Calvin's limitations and the pandemic, we can gather with friends at a safe distance outdoors and raise glasses of spirits. We can hunker down and sip homemade bourbon eggnog beside a rolling fire. The three of us will eat a roasted bird with all the fixings, plus pumpkin pie for dessert. We are secularly blessed and deeply grateful for each other, our friends and our fortunes, and the ability to share our blessings and fortunes with others.
Recently, I saw a meme asserting that the reason some people don't believe Covid-19 and racism are real or serious is because neither has affected them. I concur. As the mother of a significantly disabled and chronically ill child, I experience a similar dynamic: other's underestimation, denial or lack of understanding and empathy regarding the challenges we face in navigating and enduring the complex and often sorry world of our child.
While walking Smellie at the fields the other day I heard a twelve-minute segment on NPR about a disabled woman's struggle to survive in a hospital where the doctors and nurses repeatedly dismissed the notion of her quality of life because she couldn't walk or talk. In doing so, they withheld critical medical care which led to her death. She was only 36. Listening to the story, I was reminded of how Michael and I sometimes feel when we attempt to advocate for our nonverbal, legally blind, autistic, incontinent, seizure-prone, intellectually and physically disabled, utterly sweet and defenseless child who can do virtually nothing by himself. Despite Calvin's struggles, he has a certain indisputable quality of life, and he touches people in meaningful ways. In other words, his life matters. And as his best champions who know him far better than anyone, so does our advocacy for him.
Beginning when Calvin was two, we met with neurologists whose virtuous aim was to eliminate his seizures, albeit seemingly at any cost. To achieve their goal, they prescribed highly addictive benzodiazepines and increased those and other drugs to debilitatingly and sometimes dangerously high doses, usually downplaying or denying the side effects caused by the drugs. That these physicians did not have children of their own suffering from medically refractory epilepsy allowed them to be somewhat divorced from grasping the drugs' heinous side effects. This led to what often felt to us like the cavalier prescribing of the medications. These doctors couldn't know the anguish of seeing their own precious child go berserk, become a zombie, careen, shriek, cry, stumble, regress, wither away, explode, panic, perseverate. In other words, their guidance was worthy of question because they had no skin in the game, (which is not to say their advice should have been utterly disregarded.)
Some of the best treatment we've received—and to be fair, we have gotten plenty from humble specialists who are the most sympathetic listeners—was from two emergency room physicians whose eight-year-old daughter had epilepsy. Calvin was eleven that time he was admitted to the ER after a cluster of seizures which weren't responding to emergency medication. Immediately upon discussing a plan to alleviate the spate of fits, the physicians, who worked consecutive shifts, let us take the helm. They allowed us to administer Calvin's cannabis oil to him, something that most hospitals prohibit. Their empathy was palpable. Their ceding to our strategies was clear and deliberate. Because of their daughter, they had skin in the game and could empathize with our situation and responded accordingly.
When Calvin was an infant-toddler, I was upset by a magazine article about a mother of healthy sextuplets. When I expressed my resentment, one of Calvin's in-home nurses responded, "You're not over that yet?" Apparently, my lingering grief, sense of loss and despair over having a disabled, feeble, seizure-racked child was unreasonable. Also early on, during some of Calvin's demanding in-home therapy sessions, various professionals told me that Calvin, my tiny, limp premie with his incomplete brain, would cry in order to manipulate me into picking him up. Upon hearing this, my heart began to pound. The truth was, my fragile child was in distress and simply couldn't cope with the colossal tasks being asked of him. It hurt me that they couldn't understand.
Some years ago, I read that the cells of a fetus remain inside their mother's body—her tissues and bloodstream—for decades. I reason this might account for what is commonly referred to as the maternal bond, and might explain why the gut instincts of mothers seem so often right.
I recall too many times I wish I'd followed my gut rather than various specialists' recommendations. As one with the most skin in the game (besides Calvin), I should have patently refused to put him on that first benzodiazepine when he was three. I should have taken him off of the rigorous ketogenic diet when it clearly wasn't working. I should have questioned allowing a painful and bloody intubation when it didn't seem necessary; I should have been more assertive when asking for the best expert to insert Calvin's IV before he lapsed into a forty-five minute seizure, one that I had sensed was looming despite the doctors' and nurses' skepticism. I should have refused the piling-on of medications and the ratcheting-up of doses to harmful levels.
But, as with racism and at some level, Covid-19, there's an element of society that tells us things are not as bad as they seem. We're told everything will be okay. We're led to believe we are imagining or exaggerating things. We're taught to doubt ourselves, and to unquestionably trust and comply with authority. We're sold a bill of goods that experts undoubtably know our children better than we do. We are judged—for how we deal or don't deal with adversity, for our assertiveness, our demands, our expectations, our protests, our impatience, our tack—by people who have no skin in the game and by those incapable of fully understanding—despite thinking they do—what it's like to live with, love, raise, advocate and fear for a disabled, chronically ill child ... or a nonverbal loved one in the hospital with suspected Covid ... or a mother of a child with black skin.
While walking Smellie this morning it was twelve degrees with a windchill factor of minus two. I braved the cold with layer upon layer of winter gear. Smellie, who seems to thrive in cooler temps, remained untroubled. By day's end, there could be as much as a foot of snow to shovel. Roads aren't yet plowed well, so a long car ride is not on the schedule.
Technically, it's not even winter yet. Nonetheless, here we are stuck indoors without much to do. Michael reminded me that, because of the pandemic, Calvin likely won't be back in school for another few months at best, not until he can get the Covid vaccine.
So, it's gonna be a long winter. We can't send Calvin to school for several reasons: he won't keep a mask or shield on his face; he touches and sometimes bites and mouths surfaces—windows and their sills, tables, banisters, the backs of chairs, radiators; he puts his fingers into his mouth frequently; caregivers won't be able to maintain a three- to six-foot distance since they have to walk within arm's reach to keep him safe, and they have to feed him, toilet him and change his diapers. Calvin's underlying health conditions—most significantly, perhaps, his epilepsy—put him at great risk of complications or death if he were to get Covid. People with developmental disabilities are three times more likely to die from Covid than the general population. Moreover, Calvin's school is not routinely testing students, faculty or staff. To make matters worse, infection rates in Maine have spiked recently. The stealthy virus is everywhere in the community. Finally, if Michael and/or I were to get very sick, without family nearby or nurses to help take care of Calvin, we'd be in some serious trouble.
So, it's gonna be a long winter. But because of Calvin we've had years of practice at sheltering in place with little to do and virtually nowhere to go.
P.S. It has been sixteen days since Calvin's last seizure. I attribute a handful of long(er) stints these past two months to an increased dose if homemade THCA cannabis oil. Thought you'd like to know.
Need I tell you, this runaway pandemic is taking its toll. Days are long(er) and monotonous. Calvin hasn't been in school since March; he won't keep a mask on his face and we can't risk him getting Covid and bringing it home. He can't even remotely access a remote non-academic education, mostly because he is incapable of attending to a screen, but also because it is yet unclear what simple abstractions—like interpreting a talking head on a small monitor—he can comprehend (not to mention he bites and chews and bangs the crap out of everything.) While other parents might wish their kids would get out from under their electronic devices, Michael and I pine for a day when ours could sit quietly just to watch a movie or video so we could get something done. Instead, and likely due to drug side effects both current and residual, Calvin is pretty much in constant motion. He just can't sit still.
So, my days are spent with my son in tow, traipsing around the house and yard and sidewalk as long as there is not too much ice or snow. I give him a bath, feed him, go for long car rides looping along back roads with a few essential glimpses of the water to keep me (mostly) lucid. Every morning before Michael heads to his studio, and on most evenings if he gets home early enough, I walk Smellie to the fields, ducking into the wooded trails along the perimeter.
On these outings, I see lots of bicyclists, walkers and runners. I watch duos strolling along winding roads. I see couples walking frisky new puppies and lumbering mutts with grizzled muzzles. I see twosomes in their bright running and biking regalia pumping up gradual rises and flying down hills. My first reaction when I see these folks is one of solidarity; I'm glad people are getting out and about in all kinds of weather. Strangers or not, it's good to see them. Then, as they disappear over my shoulder or in my rear view window, I realize—during the pandemic—how impossible it has been for Michael and me to catch a break together as a couple. I realize that our friends virtually never see us alone together. Sigh.
Because Calvin can't stay home by himself like other teens, there's no chance for Michael and me to head to the forest or beach for a morning stroll together, no chance to grab takeaway burritos and sit on a park bench, or plan a seaside picnic. And the difficulty in doing so is not just during the pandemic. Our kid will never grow up. He'll never spend a day with a friend. He'll never go on a sleepover. He'll never take a job. He'll never go off to college or travel abroad. He may never even move out of the house.
If this sounds like a pity party, it is. I allow myself to indulge once in a while, though I'm not looking for sympathy; everyone has their struggles. And to be fair, dear friends of ours have offered to take care of Calvin while Michael and I go off on our own but, pandemic or not, that is easier said than done by either party.
So for now, at least, the four of us (we take Smellie everywhere) will climb into the car for our weekend drives. We'll put Smellie on the leash and Calvin in the stroller whenever we can get some fair weather. We'll hang out in our robes until late into the morning, sometimes listening to music, drinking extra stovetop espresso, eating eggs and toast or bran or oatmeal, watching pre-recorded late night comedy. We'll continue putting Calvin to bed before six, hoping he goes to sleep without too much trouble so we can enjoy a quiet evening together. And I'll keep taking my daily drive, feeding Calvin finger food from the driver's seat while spying other lucky couples making their way home or down the road a spell for a glimpse of the water.
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:
I don’t know how a body and mind can go sixteen days seizure free and then have four or five seizures in as many days.
Just when I think Calvin is going to have a decent month, he spirals into a torrent of fits. It’s how epilepsy rolls, and is why I am left not knowing what to do in terms of treatment. I cling to hoping the “less is more” strategy can work—he’s on a moderate dose of just one pharmaceutical plus my homemade THCA cannabis oil—thinking that Calvin’s seizures will at some point begin to resolve. After all, he’s had half as many focal seizures this year as last, and a fraction compared with years past. His grand mals, however, continue to inch up, though only slightly more than in past years when they’ve hovered in the fifties and sixties.
Despite Calvin's ongoing seizures, I’m loath to try a new pharmaceutical because of the heinous side effects they all cause. I hate to put my sweet boy through the trials. Sometimes I wonder if the side effects are worse than the seizures themselves. Who knows? I have a hunch but I can't be certain. Most neurologists don't seem to know.
I’ve toyed with retrying the Palmetto Harmony CBD cannabis oil. Several years ago, Calvin went forty days without a grand mal on a small dose of it. It appeared, however, that when he got to higher doses, Calvin’s focal seizures increased, and he was never able to regain the same respite from grand mals. Eventually, we took him off of it and tried the plant-based pharmaceutical version of CBD, Epidiolex, which seemed to exacerbate both kinds of his seizures, though I can't know for certain.
Last night, on the heels of a full moon, a wicked storm whipped through, battering the house, downing limbs and cutting the power at seven p.m. Calvin slept right through until a grand mal at 5:30 this morning followed by a focal seizure two hours later. During the focal seizure he wasn’t breathing. In the dim light it was hard to tell if his lips might be turning blue. I gently pressed on his diaphragm several times thinking I could facilitate an exchange of air. Shortly thereafter, he came to, but not without giving me a scare.
I think about the early days when we called 9-1-1 so often, and about the multiple trips to the emergency room, the botched IVs, the forty-five minute seizure which we thought would take him, the unnecessary, harrowing and bloody intubation, the many transports to Maine Medical Center’s pediatric intensive care unit. Every time he seizes I fear the need to go to the hospital, especially during Covid.
Approaching noon, we still didn’t have power. All day the house was darkish, damp and chilly, at least until we were able to get a good strong fire going in the wood stove. Calvin eventually came out of his funk and rested most of the day, but I still fear more seizures tonight and/or tomorrow morning. The tempests haven't completely passed; I see the treetops sway and the heavy bows bob outside the window. I feel my son's fits in his heartbeat. I feel them like a chill in my bones.
