twenty-twenty-one

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.

a christmas carol

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.

skin in the game

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.

February, 2015, Photo by Michael Kolster

gonna be a long winter

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.

lucky couples

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.

Simpson's Point, almost noon.

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:

              

tempests

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.

debt of gratitude

Last night, after eating a ridiculous meal that Michael spent all afternoon preparing while I was upstairs with a postictal Calvin, we mused on things we are grateful for. My husband said the nicest things anyone could say about me, nearly bringing me to tears. I read him yesterday's post noting my thanksgivings. In doing so, I realized how woefully remiss I had been in failing to mention so many other essentials to be thankful for, so I've added them here today:

Farmers who grew the wheat, potatoes, carrots, green beans and pumpkin, and raised the pigs, dairy cows and turkey for our meal. The pigs and dairy cows and turkey themselves. Migrant workers who risk their lives doing the back-breaking work of harvesting crops, and the dangerous labor of butchering, preparing and packing the meats we put on our table. Truckers who drive their rigs long distance to deliver the perishables to stores. Men and women who laid down large sections of road to get us where we and the truckers are going. Grocery store clerks and workers who risk their lives in a pandemic to help keep the rest of us fed. Nurses and doctors who have saved Calvin's life on two occasions, and others who are risking their lives during a pandemic to treat us and keep us alive. Indigenous Americans whose sacred ancestral lands, villages, culture, language and children were pillaged, and whose people were massacred by White colonizers; their descendants are fighting to preserve their rights and land and water to this day. Captured and enslaved Black men, women and children whose sweat and labor is the very foundation of this nation and its successes, and has built and buttressed so many White people's fortunes and privileges, however modest; their descendants are fighting against oppression to this day.

To these and those I humble myself, and owe a debt of gratitude—and more—every day of the year.

A similar feel to last night

thanksgivings

loved-ones' covid recoveries. back door gifties. a friend's homemade garlic bagels and onion bialies with cream cheese and eggs. mild november days. starlit skies. crescent moons. seeing orion and other constellations out the upstairs bathroom window all hours of the night. roof overhead. fire in the stove. a desk from which to view the garden and write. stovetop espresso with stephen colbert and jimmy kimmel. handsome, loving, fun husband, father, artist, chef. ample space for keeping safe and (mostly) sane in the pandemic. cooking with gas and stereo. roasted, spatchcocked turkey. honey-glazed carrots. an attempt at my mother's stuffing with ground sausage and walnuts. pumpkin pie. gifford's old fashioned vanilla ice cream. bowdoin fields and trails. smellie, the best dog imaginable. extended family. ex-roommates still in the picture. childhood friends and former students who still keep in touch. beloved homies from coast to coast and abroad. new friendships and ones which are decades old. memories of our dear friend-brother-son who spent several thanksgivings with us when he was in college and who lives on deep in our hearts. people fighting for truth and justice. president-elect and his veep, plus other diverse, experienced, measured, respected public servants—ahhhhhh. sweetest, cutest, cuddly son. cloud-strewn skies over sparkling waters. donated strollers. walks at woodward point preserve. clusters of crooked sumac, white pine and naked oak. chilly nights warmed by an open fire. bits of bourbon. memories of my friend woody who used to love our leftovers. eclectic music collection. seizure-free days (sadly not today or yesterday.) sharing fortune with those less fortunate. letters from a death row inmate. perspective.

one day at a time

Dreary, gray November day. It's pouring outside. Streets are flooded. A city worker claws heaps of needles and leaves from a storm drain. The effort looks futile. Calvin is in the back seat going batshit crazy. It has been eight days since his last grand mal. He has been ramping up by degrees. I wonder if this storm—the lightening and thunder, the low barometric pressure—will bring it on. If he could just eke out another day.

As we head straight into winter, I can only think of spring. Twenty-twenty has been a rough one—so many (more) unarmed Black people getting killed by police, peaceful protestors being gassed and shot with rubber bullets, raging wildfires, a runaway pandemic, a neglectful president, shuttered stores, boarded-up windows, millions unemployed, legions sick, a quarter million dead, the election, the bullshit claims of widespread voter fraud, the lack of concession. Even my large-leaf rhododendrons failed to bloom this summer. As if so many friends, I felt the blossoms' absence in June. I once heard that plants produce when they are stressed. This year the same shrubs are covered in buds, promising a psychedelic explosion come spring of 2021.

Sadly, that's a long way off. As for pandemics, who knows when we'll see a vaccine. For now, we just have to put our heads down, like this morning on my walk with Smellie. Brandishing my umbrella against torrential winds, somehow I managed not to let it turn inside out. The world feels like that right now—inside out, upside down, pressing in.

To keep us and our community and nation safe, the three of us will be spending Thanksgiving—for the first time in nearly two decades—alone. It'll be just fine, even nice for a change. We'll be gladly captive with each other and the aroma and flavors of roasted turkey, garlic mashers, honied carrots, cheese bread, green beans and pumpkin pie a la mode. We'll be sipping bourbon and wine in front of a rolling fire. Though we won't be gathering with family or friends, we have a multitude to give thanks for.

As I drive down lonely roads, I consider the sacrifices and hardships caused by this virus—the monotony of staying in, the sorry lack of gathering with friends inside our home, Calvin's inability to attend school remotely or in person, the loss of other kinds of ventures. I think about my own long-term limits on freedom due to Calvin's chronic illness, his dire physical and mental condition. Then I think about my pen pal who has been on death row since he was a teen barely older than my own. His mother's name is the same as mine. He's been in prison for a decade. He writes to me from a cell that is freezing this time of year. He describes what it's like: Don't let the time do you, you do the time; I fight off demons every single day trying to keep it together; It ain't easy just got to take it one day at a time.

During this crazy coronavirus time, it seems that's good advice for us all.

the gravity of it all

The gravity of the sun and moon makes tides ebb and rise, makes spells befall my son. At least it seems so. Twice he seized this weekend, on the brink of a new moon. The arrival of both fits was stealthy, no major ramp ups, no mania, no marked malaise, just his usual restlessness on what has become—because of coronavirus—an ever-shorter tether.

In the wake of last night's grand mal, Michael and I sat in the dark with Calvin, I on a step stool next to his bed, Michael in a chair he brought in from another room. Plates in our laps, we ate dinner in silence as our boy drifted back to sleep. Occasionally, I put my face next to Calvin's, or licked a finger and held it under his nose to make sure he was still breathing; it's the twenty minutes, or so, after a grand mal when the risk is highest of succumbing to SUDEP (sudden unexpected death in epilepsy) particularly for someone like our son.

Just before midnight, I woke myself crying out in a dream about my late father, though not the one in which he is whisked helplessly into space by a roped bundle of helium balloons caught around his ankle. As I came to, gale force winds were hammering the house and rocking the pines in their foundations. Rain and debris from nearby trees pelted the windows. Along with the new moon, I wondered if the approaching torrent had weakened Calvin's fragile seizure threshold. I padded into his room and slipped him a little extra THCA cannabis oil hoping to prevent another seizure from gathering momentum.

For over three hours I laid awake listening to the storm. I tossed and turned: worrying about my loved ones who got Covid and wondering if they'll fully recover; exhausted from nine months of caring for Calvin six to eight hours most days by myself; grumbling about another of Calvin's IEP meetings in which his one-on-one therapies continue to be whittled away despite the absence of any in-person or remote schooling since March. Just after I heard the clock chime three, I finally fell asleep.

Today, Calvin has been cat-napping on the green couch. He sleeps for minutes at a time, wakes, gets off the couch—or me—then on again and rests some more. We will likely spend the entire day this way as he recovers from the grand mals.

As I sit here considering options for a title of this post—gravity, new moon, life storms—I search my blog to ensure I haven't used any before. I type in the word gravity and find this one. I read and mull over each word, nodding my head slightly as I go. Then I watch the attached video, which gives me the chills. At the end my eyes and nose are stinging, my face crumpling up as I begin to weep. It's so hard, this life with Calvin, made worse because of coronavirus and the absence of school or nurses to help ease the load. If not for my husband, the weight of it would be colossal—the seizures, the sleep deprivation, the angst, grief, loss, frustration, anger, inertia—the immense gravity of it all.

covid-19

Today, I learned that two people whom I love dearly have been infected with Covid-19. It's possible, if not likely, that they've infected others.

The news made me recall a recent comment on social media: "You don't die from Covid, you die with Covid." I couldn't believe my eyes, couldn't believe the (willful?) ignorance behind such a reckless statement.

People, please. For the sake of the nation and the welfare of its people, especially vulnerable folks—the elderly, the infirm, Black, Indigenous, People of Color, children and adults like my son Calvin, and those with other preexisting conditions like cancer, diabetes, COPD—please stop spreading misinformation about Covid-19. Just stop. And take precautions not just for yourself, but for others: wear a mask indoors and in public spaces when near others; understand that the only reliably safe Covid pod or bubble is your own household.

Here are some facts:

Fact: Covid-19 is not "just like the flu;" First, Covid-19 can cause serious complications including long-term damage to the lungs, heart, kidneys, brain and other organs. Second, it is thought to be substantially more deadly (possibly ten times or more) than most strains of influenza. 

Fact: Increased testing does not fully account for the rapid increase in reported cases; that is a false and reckless narrative. While more testing helps to reveal existing cases, the fact is the virus is spreading exponentially. For evidence, just look to the recent spike in hospitalizations and deaths nationwide, even in just the past two weeks. On Thursday, states reported 163,000 new cases of covid-19 and over 1,500 deaths—the highest number since May. Sixty-six thousand people are currently hospitalized. Texas has had to set up mobile morgues.

Fact: People don't just die with Covid, they die from Covid. Evidence: according to data from the CDC, the US has had nearly 280,000 extra deaths this year as of the end of September. That roughly correlates to the Covid-19 deaths thus far this year, which is rapidly nearing 250,000 (and thought by experts to be undercounted.)

Fact: Many people with Covid-19 are presymptomatic or asymptomatic, which means they could be unwittingly spreading the virus to others.

Fact: Doctors and public health officials are saying that small gatherings—dinner parties, carpools, playdates—create perfect conditions for the virus to spread among people who are crowded into poorly ventilated spaces. Experts remind us that we should avoid spending more than 15 minutes (in any 24-hour period) within six feet of people who don't live in our household, and they are begging folks to stay home for the holidays this year—i.e. just because he's your grandpa or grandson doesn't mean he doesn't have Covid.

Fact: Scientific research shows that wearing a mask helps to prevent the spread of the virus to others and could help to prevent getting it. Keeping public safety in mind, wearing a mask is no more of an infringement on our freedoms than wearing a seat belt or driving on the right side of the road; we follow these precautions to keep ourselves and others safe from harm. We could consider wearing a mask as a tiny, patriotic sacrifice for our fellow Americans.

We can stop this virus' wicked trajectory if we are committed. For me, all it took was imagining my husband and/or my son in the hospital.

Wear a mask to protect others and to protect yourself. It's not that hard. What's hard is losing a parent or child to coronavirus. What's hard is being on a ventilator for weeks. What's hard is dying in a hospital without loved ones nearby. What's hard is working sixteen-hour shifts to help keep Covid patients alive. 

What's hard is knowing it didn't have to be this way.

Calvin in the hospital, 2006

so little time

so little time these days to write my blog. my memoir has been neglected. leaves pile up on the ground outside. dust bunnies collect in the corners of the house. days are getting shorter fast. the sun is low, even at high noon. i see it slung in the sky above a tidal inlet where workers break their backs harvesting clams from the mud. 

calvin went sixteen days between seizures. in a month's time, he's only had four grand mals. his focal seizures are at a record low this year. he's taking way less medication—only one antiepileptic pharmaceutical. it seems my homemade thca cannabis oil is what's helping most, and that we are treating his anemia.

he's growing like a weed, though still tiny for someone who will be seventeen come february. almost five feet now. eighty-three pounds. we're still lifting him. keeps us strong, though not exactly young. 

dawn isn't coming until six-thirty. sun is setting at four-twenty today. tomorrow will be two minutes and twenty-four seconds shorter. so little time to do much of anything these days. the pandemic sadly rules.

hope for my america

my america is gorgeous. it lives up to its original promises. it is inclusive and, like the universe, is ever-evolving. it refuses to fetishize the evils, abuses and inequities of white nostalgia. it's hopeful, open, well-educated and well-informed. it's full of folks who are wise, charitable, courageous, righteous, curious, ingenious and brotherly.

my america is welcoming, kind, and loving. Its people admire and embody honesty, humility and decency. as someone once said, it leads by the power of its example rather than the example of its power. in my america, leaders are driven by truth, compassion and a great desire to unite the rest of us for the common good.

in my america, everyone recognizes that success is not achieved in a vacuum, where bootstrap and rugged-individualist theories die on their mythological vines. it's where people appreciate that their triumphs are won only through the help of countless others—the banker, the paver, the farmer and harvester, the meat packer, truck driver, garbage handler, builder, baker, coffee roaster, bagel maker. in my america, the empathy gap and the chasm between the haves and have-nots narrows instead of widens, and workers are not exploited, rather, they share the fruits of their labor.

in my america, women and people of color occupy a majority of the seats in boardrooms, executive offices, faculties, courts and cabinets, embassies and halls of congress. in my america women occupy the oval office. in my america, racism, discrimination, xenophobia, misogyny, bullying, abuse, harassment, rape and femicide are things of the past. in my america, women, people of color, lgbtq people and their works are proportionately represented in monuments, art museums, literature, film, theater, music and television.

though i'm no christian, in my america, people who claim to love jesus actually embody his teachings by loving, accepting and serving their neighbor—whether gay, straight or transgender, muslim, jew, atheist, native or african american, latino, asian, citizen, immigrant or refugee—and by feeding the poor, housing the homeless, healing the sick, casting no stones.

in my america, women have control of their own bodies.

in my america, syphoned funds from a bloated military are injected into education, healthcare for all, childcare, infrastructure and housing. in my america, no one is the victim of police violence or profiteering, there are no private prisons, people imprisoned for possessing small amounts of drugs are released—their records expunged—and capital punishment is forbidden.

in my america, our sordid history is taught in schools, not scoured and whitewashed like it has been for decades, if not centuries. it's a nation where symbols of the failed, treasonous confederacy are toppled once and for all. it's where monuments revere heroes of noble and just causes, and memorials honor victims of atrocities. in my america, we are moved to feel remorse for the crimes of our forefathers, and to atone.

in my america, those who are fleeing war-torn, starved and violent nations are welcomed here with open arms; we have room for them.

in my america, people see the value of—and work to protect—each other, particularly the vulnerable, including people like my son calvin, who in so many ways is one of the best americans i know.

today, my america feels within reach.

Rangely, Maine

meanwhile in america

a comfortable place. a window or deck with some kind of view. three bedrooms, two-and-a-half baths. healthy, well-fed children. no oppression due to race, religion, sexual preference or gender. a dog and a cat. reliable cars. gas in their tanks. a well-stocked fridge. a jam-packed pantry. a cupboard full of random booze. college degrees. no student debt. white-collar jobs. working from home. paid sick leave. vacation too. health insurance. childcare. broadband. cable t.v. laptops. iPads. cell phones. 401Ks. assets. equities. legacies. futures. write-offs. loopholes. quiet streets. decent schools. grocery stores galore. parks. camps. zoos. weekends away in nice hotel rooms. coats for every occasion. a dozen shoes. a household without chronic illness. neighbors with similar beliefs and views. pandora. amazon. netflix. hulu.

meanwhile in america.

three generations living under one roof. dissolving wallpaper. bed bugs. mildew. crummy plumbing. bad landlord. hungry tummies. refrigerator blues. bare cupboards. convenience-store food. thankless work if there's work at all. starvation wages. long days. no sick leave or paid vacation. no employee healthcare. soup kitchen queues. no childcare. cash-strapped. unpaid bills. no broadband. dilapidated schools. four people sleeping in one room. one coat for all weather. worn-out shoes. chronic illness in the family. acute, too. rationing medication. eviction looms. an innocent relative in prison. another deported. a loved one dying alone in the hospital from covid.

i hear on the radio a man named eric liu:

rugged individualism never got a barn raised, never got a field cleared, never got a schoolhouse built. the only good things that have happened have happened because people came together in a way where they took responsibility for each other.

a comfortable place: neglect in understanding—listening to, advocating for (in the streets and at the ballot booth), charity, bearing witness to and lessening—the suffering of others. complacency, selfishness, cynicism and ignorance can so obscure what's true.

Matt Eich/Alexia Foundation

in no uncertain terms

My parents told me and my siblings never to say the word "retard." Still, we called each other "spazzes" with reckless abandon. I grew up in a time when, and place where, it wasn't uncommon for racist jokes to be told with little reflection on the harm they caused. Some were told by my father, whom I didn't consider racist because of his friendship with, kindness to, and deferential treatment of people of different races and nations, including my friends.  

Later in life, it felt troubling when people close to me mocked my gay friends, used the "N" word, called Middle Easterners "towel heads," and referred to homeless people as "winos" and "bums." A friend's husband once used a racial slur to suggest that Black people are lazy. With a pounding heart and a face flush with indignation, I've challenged antisemitic, homophobic, sexist and racist tropes. Years ago, I ignorantly used the slur "White trash." I'll be forever grateful to the White woman I was speaking with who schooled me about the ways in which the term is offensive, wrong and hurtful. I've never said it since. 

Long before Calvin was born, I became sensitive to the bigotry and oppression that non-White, non-male, non-straight, non-Christian, poor, and homeless people face. I owe that to the many African American and gay men and women I've loved, lived with and befriended, and to my Chinese, Japanese, Filipino, Muslim, Latino and Jewish coworkers, friends and neighbors in Seattle, San Francisco and Maine. For years, I've done in-depth study of this nation's systemic racism; research shows racial discrimination occurs at all levels of government and society including housing, healthcare, education, employment, lending, criminal justice and voting. My son Calvin has given me firsthand experience of what it means to live with disability—its limitations, its stigma, its burdens and hardships. It wasn't until after his birth that I learned that children and adults like him were the first of millions to be executed during Hitler's Holocaust. This knowledge has stayed with me, and has further informed my opinions about bigotry and the dangers of otherism.

Despite what I see as dubious foreign policy, blatant and astonishing self-dealing, shady and felonious henchmen, petty and vindictive tweets, and reckless handling of the coronavirus pandemic, it's my love and support for vulnerable, oppressed and marginalized Americans, immigrants and refugees that is at the heart of my criticism of Trump and his administration's harmful policies. I mean, who cruelly separates infants, toddlers and teens from their parents for any reason? Trump does. For someone who claims to be Christian, that policy is the antithesis of godly; in other words, it's evil, and tantamount to terrorism.

As if the past four years of Trump's racist, xenophobic, antisemitic, homophobic and transphobic rhetoric and policies weren't enough, yesterday, I saw a video in which Trump, at a mid-September rally this fall in Minnesota, said to the crowd:

"You have good genes, you know that, right? You have good genes. A lot of it’s about the genes isn’t it, don’t you believe? The racehorse theory—you think we're so different? You have good genes in Minnesota.” 

For those of you who don't know what the racehorse theory is, it's the premise that selective breeding— eugenics—can improve a nation’s performance. German Nazis used this theory as the basis for exterminating those they deemed as undesirable, to advance their attempt at racial purity and strength.

Until now, in this blog, I haven't promoted the full argument that Trump is a racist, despite having been utterly convinced of it for years. However, after watching the video, I can no longer refrain. This time, his comments are so clear they cannot be explained away as being "not racist" or "sarcasm" or "in jest" or "taken out of context." This time, there's no denying the meaning or significance of his words; his message is odious and deliberate, its threatening implications, unmistakable. His words should serve as a caution to anyone thinking of voting for him who does not support White supremacy or Nazism. 

In no uncertain terms, Trump touted the same theory which Hitler employed to murder eleven million innocent people—disabled children and adults, the infirm, the elderly, the mentally ill, gay men and women, Jews, Romanis, Jehovah's Witnesses, Roman Catholics—to a crowd of mostly-White Americans of mostly-German heritage in a state with a growing number of Somali and Hmong immigrants.

After seeing Trump spew his vile words, to then knowingly back him is to choose to secure a White supremacist racist in the most powerful position in the world. His rhetoric goes hand in hand with his long record of using racist dog-whistles—"law and order," "save the suburbs," "go back to where you came from," "America first," "bad hombres"—and is particularly disturbing considering his tacit and overt support of White supremacists and far-right terrorist militias. As cynical as it might sound, it's not a stretch to imagine that his racehorse theory serves as grounds for his administration's promotion of herd immunity, in light of the well-documented evidence that Blacks, Indigenous people and Latinos are two to six times as likely to die from Covid-19 as Whites, depending upon age.

Chilling.

I can anticipate a response to my assertion from some Trump supporters. They'll say they're voting for him because they are pro-life and they are under the impression that he is too. But a pro-life claim rings hollow if one supports a man who espouses such a nakedly racist and dangerous theory used to justify the genocide of countrymen, women and children. Furthermore, any pro-life claim is meaningless if one does not also support social programs that sustain life beyond birth for those in need, such as healthcare, housing aide, food aide, family leave, childcare, pre-K, a decent education, and an interest in protecting the lives and livelihoods of immigrants, refugees and their children.

So, before going to the polls, if you have not voted already, ask yourself what kind of America you want to wake up to every morning.

Edward Muybridge, Horse Galloping, 1878

american dream (two paths)

I dream at night of San Francisco, but it's not the town that was my home. I dream at night of my husband, but he's not the man I know. I dream of movie stars and strangers falling in love with me. I dream of ex-sweethearts, but they're not like I remember. I dream of Calvin speaking, but also of him seizing. I dream of fleeing an America I don't recognize—a quarter million dead and thousands of others dying, Confederate flags, internet trolls, deceitful leaders, social unrest, jobless, hungry, homeless, sick Americans.

But my eyes are wide open; it's not a dream at all.

The other night, after Calvin's worst day in a long time, I laid awake thinking about a movie Michael and I had just seen called 20th Century Women. Near the end of the film was a clip from President Carter's 1979 Crisis of Confidence speech. So moved, the next day I went online to watch and then read the entire speech. As I did, I felt as if he were speaking about the coronavirus pandemic, its trivialization by some, and its reckless handling by the current administration. It felt as if he were addressing the current political climate—the pugilistic presidential election, the recent and regrettable Supreme Court fight, the deadlock in the Senate, the spread of election disinformation, the disenfranchisement of Americans, and the polarization and divisiveness in our nation. Here are some excerpts which struck me:

I want to talk to you right now about a fundamental threat to American democracy.

The threat is nearly invisible in ordinary ways.

It is a crisis that strikes at the very heart and soul and spirit of our national will. We can see this crisis in the growing doubt about the meaning of our own lives and in the loss of a unity of purpose for our nation.

Our people are losing that faith, not only in government itself but in the ability as citizens to serve as the ultimate rulers and shapers of our democracy.

President Carter went on to say:

The people are looking for honest answers, not easy answers; clear leadership, not false claims and evasiveness and politics as usual.

You see a Congress twisted and pulled in every direction by hundreds of well-financed and powerful special interests.

You see every extreme position defended to the last vote, almost to the last breath by one unyielding group or another. You often see a balanced and a fair approach that demands sacrifice—a little sacrifice from everyone—abandoned like an orphan without support and without friends.

We are at a turning point in our history. There are two paths to choose. One is a path I’ve warned about tonight, the path that leads to fragmentation and self-interest. Down that road lies a mistaken idea of freedom—the right to grasp for ourselves some advantage over others. That path would be one of constant conflict between narrow interests ending in chaos and immobility. It is a certain route to failure.

All the traditions of our past, all the lessons of our heritage, all the promises of our future point to another path—the path of common purpose and the restoration of American values. That path leads to true freedom for our nation and ourselves.

Carter's words resonated with me deeply, and rereading them I was nearly brought to tears. I imagined the two paths he mentioned—two Americas, really—one of them rising high toward healing, reform, unity, inclusiveness, diversity, compassion, decency, and justice, the other descending deeper into cynicism, intimidation, chaos, bigotry, selfishness, poverty, illness and lonely, unnecessary deaths from a runaway virus.

I hope in this election we, as a nation, abandon our worst impulses and fears and choose the high road—the path to an America worth dreaming of and fighting for—one glowing with hope and light and integrity, an America not just for some of us, but for us all.

Vote!

ice cream sundays

Inevitably, on Saturday and Sunday morning walks with Smellie, one neighbor or another will ask if I have any big plans for the weekend. My answer is always the same: nope.

 

With a kid like Calvin, most kinds of outings are difficult and others, especially during a rampant pandemic, are impossible. We are faced with major stubbornness if we try to take Calvin for walks on the beach or in the woods, so we pretty much never do that anymore. We no longer take him to the grocery store because he won't keep a mask on his face and he drools on and touches everything with fingers that go directly into his mouth. We almost never go on overnights because we can't be sure of securing a safe place for him to sleep, and though it has been years since he has been hospitalized for prolonged seizures, that fear is always in the back of our minds.

So, a typical weekend day for us starts at the same time as every other day, between 5:30 and 6:15, which is when we have to give Calvin his time-sensitive anti-seizure medicines. Michael makes coffee for us and breakfast for Calvin, reads a bit of news then goes for his 5K. When he gets back, I often make eggs and toast for everyone, then I take Smellie for a walk. After showers, we go for a car ride. On Saturdays, we venture to the next town over to pick up a freshly-baked baguette, then stop for a spell at the boat launch where we watch the Kennebeck river in its various stages of calm and choppy. Once in a while, we get the spot all to ourselves. Mostly, I stay in the car feeding Calvin and, if there are no boats, Smellie ventures into the water. On mild days we all get out for a bit to let the sun warm our weary bones.

 

Once home, Michael heads off to his studio for a few hours to develop film, make pictures, prepare for the week's classes or work on his next book. On days after a seizure, like today, Calvin spends most of the day napping in my lap on the green couch. Michael usually comes home early to hang out with us before making dinner.

Sundays are nearly carbon copies of Saturdays with the exception that we get ice cream from the drive-thru just after it opens. On the drive home, I feed everyone a few bites of one of our favorite flavors—gingersnap, coffee oreo, mint oreo, blackraspberry, chocolate peanut butter cup—then put the lid back on and save the rest for later. 

Pandemic or not, these are our weekends—mundane, highly limited, predictable and yet satisfying—and will be for the foreseeable future.

Michael walking Calvin down the dock a few weekends ago.

breathe deep

i tell myself often: breathe deep. forgive. forget. release regret, resentments big and small. abandon fear and angst if possible. practice compassion, kindness, respect, inclusiveness, gratitude, humility. expect successes but allow yourself to fail. imagine. wonder. create. explore. find a perch or cave from which to ponder the world. reflect. muse. hold onto hope. lose yourself. take risks, as long as you don't hurt others. founder, but move forward with as much grace as you can muster. embrace others. listen and live awhile in their shoes.

gift givers in a pandemic

In the months since the pandemic began, we've received all sorts of gifts from friends, neighbors, Michael's former students, childhood buddies and perhaps even strangers: a framed painting of Smellie, a pot of paperwhites, bags of homegrown tomatoes, green beans and white cucumbers, tiny raspberries and strawberries, garden bouquets, a photographer's self-published book, fancy beers, black trumpet mushrooms, kerchiefs and clothes for Calvin, dozens of oysters, fragrant eucalyptus fronds which remind me of San Francisco, jars of peanut butter and honey, bottles of rye, bourbon, wine and bubbly, homemade liver pate, artisanal loaves of bread and cheese, orchard apples, apple pies, dog treats, carrot cake, caramel chocolates, coffee, homemade granola, soup and spice cake. Have I forgotten anything?

No doubt these lovely gifts and their givers have lifted my spirits in the midst of hard times taking care of a teen who can do absolutely nothing by, or for, himself. Sometimes, I get a glimpse of the gift givers, but can't always catch them before they disappear. Other times, I visit with them for awhile from the porch as they stand at least eight feet away, often wearing a mask. No doubt for years, the love, affection and caring from friends and neighbors has sustained us. We are part of an amazing community. I've heard it said that it takes a village to raise a child. The fact that we are still here and in relatively good condition, despite the clusterfuck (sorry Gma) that is epilepsy, is a testament to that adage.

In the midst of this rampant pandemic, I feel doubly grateful to live in a state that is doing a good job of controlling Covid-19 levels. In my town and in nearby ones, I see most folks wearing masks in public. The first-year college students at Bowdoin are probably setting the best example, wearing their masks outdoors in groups or putting one on when they pass me on the sidewalk, fields or trails in the woods.

Nearly ten months into this pandemic, cases of coronavirus are rising in almost every state of the nation. Yet weekly, I still hear interviews with people who balk at the notion of wearing masks in public, despite the overwhelming epidemiological evidence that masks are one of the best methods to stop the spread of the virus. Don't they understand that by not wearing a mask—whether they feel healthy or safe or somehow immune—they may be endangering the well-being and lives of others?

Like gift givers, we wear our masks for others more so than for our own protection. That's how it works. Regrettably, mask skeptics cling to the selfish narrative that we all have to take personal responsibility for staying safe from the virus. But, as Americans, isn't our responsibility to be accountable for each other? Isn't that what community means—having each other's backs, watching out and taking care of one another? That was what New Yorkers did when the Twin Towers were attacked on 9/11. It's what people did in the wake of hurricane Katrina. It's what demonstrators of every color, class and creed are doing to protest police violence against Black people. It's what folks are doing during the Western wildfires. We are at our best when we help each other. Why should a threatening, runaway and lethal pandemic that has killed over 220,000 Americans be any different?

Some in this nation still stubbornly subscribe to the myth of rugged individualism and its regrettable mantras such as Every man for himself and Don't tread on me. They insist that the simple act of wearing a mask infringes on their personal freedoms or think that it's somehow a sign of weakness. Whatever happened to the notion of personal sacrifice for the sake of others? How did it come to pass that some well-off Americans value their 401Ks more than their fellow Americans' hunger, homelessness, poverty, illness, injustice, everyday struggle? How did a chunk of our nation's people become so hardened, thoughtless and reckless at the expense of their neighbors?

I like to imagine an America in which we are all gift givers: where we unconditionally help the vulnerable and those less fortunate than ourselves; where we help those who find themselves in a bind, unemployed, on the streets, needing a second chance; where we wear masks so that we don't unwittingly infect other people. Just imagine an America where compassion, support and understanding for others reigns over selfishness and petty indignation. We should help each other get through these hard times.

double whammy

Wednesday night Calvin suffered another double whammy: a grand mal at 7:30, then another one at 1:45 a.m. I had meant to get up at midnight to give him an extra dose of THCA oil hoping to avoid the second seizure, but since Calvin slept soundly in the wake of the first one, forever sleep deprived I snoozed right through.

In eight days Calvin suffered eight seizures (four grand mal and four focal ones.) It's not a good spate, and he remains lethargic with little appetite. I can see he's losing weight. As I laid next to him yesterday morning for hours, my mind raced over so many vexing thoughts and unanswered questions:

is this the anemia? is he oxygen deprived at night? is the calcium in the yogurt i give him at bedtime blocking the absorption of his antiepileptic medications? is the iron supplement triggering his seizures or causing some other stressor? should we try the palmetto harmony cbd oil again? it worked so well for a time. should we consider another antiepileptic pharmaceutical? would the drug treatment be worse than the seizures, like it has been in the past? would he succumb to their dangerous and troublesome side effects, some of them lethal? will we ever get our relatively lively boy back again? is he somehow slowly dying?

I imagine that last question might come as a shock to some of you. But this is how we—the mothers and fathers of children with epilepsy and other chronic and acute conditions—think. I remember a time when Calvin, because of a high dose of a powerful antiepileptic, didn't smile for a year. I feared I would never see his cute, dimpled grin again. I remember a time when I cried every day with a child who had become a raging little monster. I remember a time when Calvin was two when Michael and I sat next to his hospital bed preparing for his death during a forty-five minute seizure that wasn't responding to emergency medication.

Today, again, I lay with Calvin on the green couch as he catnaps. We have walked outside only about once in over a week. Thankfully, from our cozy spot in the corner of the house we can see the garden and all the lovely trees in their yellow, chartreuse and orange glory. An unknown donor dropped off some soup and cake yesterday. It's raining and the rhododendrons are super happy. The house is quiet. I'm optimistic about a sea change come the election. I have hope for the future, despite these double whammies.

a familiar hangout