real boy

pinocchio. lovingly cut from an animated hunk of wood. carved and whittled limb to limb, nose to toe. squeaky knee and elbow joints and all. he feels no pain. knows how to speak. desperately wants to be real. i don't know his story well. still, he reminds me of the boy i never bore, the one who this minute is seated fidgeting and seizurey at my feet.

like pinocchio, the boy i never birthed can talk and run and leap. he can ponder right from wrong. he can read and swim, play hide and seek. he's free from daily pain and misery. he's a boy with goals and hopes and dreams. like pinocchio pines to become, the boy is real as real can be.

i remember the sonogram. the peppery image glowing from a screen. my unborn's' limbs moved as if they were hinged. like a little wooden marionette, but without strings. his legs kicked as if he'd hiccuped. then, like waterlogged sticks, sunk and settled on the riverbed of my womb. secretly, i wondered what might be wrong, his movements so awkward and lumbering. surreal. was he a bona fide boy after all? would he fulfill my coveted dreams of motherhood?

my son's mind didn't grow in sync with his form. he still walks wonky like a marionette—elbows up and crooked, knees nearly knocking, flat-footed, toes drifting inward. but though calvin in many ways is not a real child in the same sense as some of yours (he lacks the ability to do nearly everything independently) he loves and cries and wants and needs and aches and feels. he can't do what pinocchio the wooden puppet can, but i wonder if—and i wager—my boy yearns to be real.

sublime

perusing through eight thousand pics. i fall upon an image. a still shot from a favorite film. in it, the celestial body for which the film is named, melancholia, hurtles toward the earth. its gravity, enormous. its shadow, broad and soft and inescapable. its weight, disabling, capsizing people and their relationships. 

years ago, i first saw the film. since then, calvin has suffered hundreds of seizures, including one this morning on day six. he has ingested thousands of pills. suffered painful and debilitating side effects. swallowed gobs of bitter cannabis oil, syringe by syringe.

i do a double take. see myself in this mother. her burden. her predicament. her place in the surrounding world—its dark sky and eerie light. the effort and worry etched into her face. no clear path forward. every step met with resistance. hard making progress, her gains erased. impossible slog through the mire that is her life. the weight of her child sinks her. his helplessness. her sheer effort just to keep him afloat. their back to a beautiful and familiar vista—a good and peaceful life left in their wake. and yet they manage to make headway, though really going nowhere.

even as the sun shines on her face, there is anguish in it. it's a bittersweet reflection of life with an exceptional child like mine—of yesterday and last night. of the past seventeen years. a lifetime. the image is dark and sorrowful, and yet somehow—in its raw, honest and gorgeous human depiction—soft, forgiving, intrepid, sublime.

Still image from the film, Melancholia

team hoyt

This father, athlete and inspiration died today at the age of 80. His and his son Rick's story is one of astonishing strength, stamina, patience, dedication and love. The world has lost a great man. Take six minutes to watch.

              

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.

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

decade

Like the pandemic, my son Calvin causes time to expand. Perhaps it's his protracted development—exponentially slower than watching paint dry or grass grow—which makes time-space stretch so impossibly. Unlike other parents, Michael and I don't experience fleeting years between diapers and high school graduation, because as the years pass, our boy never really grows up; he's much the same now as when he was little, though thankfully a bit less manic than when he was taking very high doses of three powerful antiepileptic drugs (see below).

Life with Calvin is a paradox in that, though time nearly stands still, it's astonishing to think that he was only six when I wrote my first blog post a decade ago. Maybe it's the writing that moves things along and makes one monotonous day different from the last. Maybe my prose and occasional poetry—or more so, perhaps, the musing that leads to them—are what inject meaning and richness into a life which otherwise might be mind-numbingly tedious, dull and unfulfilling. And how curious to think that, had Calvin not come along, I might not be writing at all. I might be stuck in a stressful, thankless job designing clothes for a hierarchical, outdoor catalog company. I might not be thinking and working so seriously to reveal purpose, to explore myself and others, to underscore and try to right injustices. I might not be considering life from the perspective of disability and other forms of marginalization, and their particular aspects of everyday living which are still unseen by—though not necessarily hidden from—too many Americans.

 

So, ten years, 2,024 entries and 1.3+ million hits since my first blog post, back when I didn't even know what a blog was, I am indebted to Calvin, and Michael (whose idea it was to write a blog) for helping me celebrate what has become a labor of love.

   

Calvin back in August of 2010, not long before I embarked on this blog.

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.

letting it out

My dear friend Elizabeth Aquino, whose adult daughter Sophie has epilepsy, writes the exquisite blog a moon worn as if it were a shell: where parenting, disability, politics and poetry intersect. In 2018, Elizabeth expanded her reach, becoming co-producer of a podcast called, Who Lives Like This?! The Grit and Grace of Caregiving, in which she and her co-host, Jason Lehmbeck, interview caregivers. It's a compelling venture in which Elizabeth and Jason ask thoughtful questions and offer their own insights on caregiving, which are often humorous and sometimes sorrowful and bleak. Last week she and Jason interviewed me about my experience raising Calvin and writing about it. They titled the podcast and corresponding blog, Letting it Out. I hope you'll tune in and share.

i can't breathe

Summer 2014

The evening was blazing hot. I was in the middle of mixing myself a bourbon with ginger beer on ice while Michael busied himself cooking our dinner. Calvin was screeching and spinning in his johnny-jump-up. He’d had an off day, whining a lot at who knows what. When I turned to check on him I saw that he was jackknifed in his jumper, his contorted limbs rhythmically pulsing.

“Oh no!” I cried, as Michael and I ran to his side and began prying his stiff body from the jumper, the crotch of which was wedged tightly between his rigid legs.

I had a hard time telling if or when the seizure was over, except for that he had begun breathing again. I gave him several drops of cannabis oil since, even though the color in his face had returned, he continued to twitch and flinch like a tortured bug. After a few minutes the spasms had subsided and he fell asleep on the couch.

That same summer, a Black man named Eric Garner and a Black man named Michael Brown also stopped breathing.

The seizures continue to batter my son every three to nine days, or so, though now they occur almost exclusively in the middle of the night.

Epilepsy is relentless. The seizures and the pharmaceutical drugs used to treat them rob our children of meeting their full potential, of living life to its fullest and often make them feel horrible. It pains me to see Calvin suffer, particularly when there seems to be nothing I can do. Try as I may, the seizures continue their steady assault on our fifteen-year-old son's brain and body. Our only hope in stopping the battery, it seems, is to continue giving Calvin an herb—cannabis—which is illegal at the federal level. In doing so we are essentially breaking the law. Luckily, I am insulated by a state law which sanctions the use of medical marijuana ... plus the fact that I am white.

Perhaps experiencing the injustice—the plague—of epilepsy is partly why I empathize so deeply with the family members of the unarmed black children and adults being gunned down at an alarming rate by white police officers and bigots like George Zimmerman. Lately, when I watch Calvin in the grip of a seizure, watch him convulse, watch his skin and lips blanch, his eyes sometimes rolling back or vacant and at others full of fear, I can't help but think about the scores of mostly black victims that continue to be sprayed with bullets, cuffed, punched, tasered, gassed, pepper-sprayed and choked to death by white cops. How did these fellow humans feel during their assaults? How do their loved ones feel when they see the distressing videos and hear their beloved's last words:

it's not real. i don't have a gun! stop shooting! officers, why do you have your guns out? please don't let me die! what are you following me for? mom, i'm going to college. why did you shoot me? i love you too. i can't breath!

Some of you might wonder why I continue to write about racism in a blog largely dedicated to motherhood, epilepsy and disability. Some of you might be fatigued by the rash of stories in the news and peeved by the talk of racism, by the inconvenience and violence of protests, by the lingering frustration and fury over the grand jury failures to indict the White police officers in the Michael Brown and Eric Garner killings, uncomfortable because of the Facebook posts condemning racism, police brutality, riot gear, racial profiling and the videos showing police assaults. Maybe you're sick of it all. Maybe you wonder why I continue to fuss about it. I'd say those are White-privilege problems, and I'll tell you why: Because as someone who feels deep despair, anger and hopelessness seeing my child pummeled by relentless seizures, seeing him stop breathing for minutes at a time, seeing his progress choked by vicious drugs and to be always fearful of the next attack thinking it might be his last, I shudder to imagine what it must feel like to be a Person of Color today and to suffer under a system built to oppress them, to mother a child who will no doubt at some point in his lifetime be wrongly profiled, targeted, pulled over, frisked, suspected, feared, questioned, blamed, arrested, charged, beaten, incarcerated or murdered by White law enforcement officers in a White criminal justice system, to live in a country where most White people deny that racism exists or is at the root of these kinds of wrongdoings. I write about it because it is wrong and pervasive and I love and understand my Black and Brown friends, and it is a problem that is not simply going to disappear until White people start to acknowledge there is a problem, until, perhaps, White people start to feel uncomfortable, which is little to ask considering what Black people have had to endure in this nation for four-hundred years.

The night after the Grand Jury declined to indict the White police officer who put Eric Garner in a choke hold that lead to his death, in the wake of Calvin's seizures, I laid awake lamenting the outcome and the plight of so many others and I thought about my fortune: My boy is alive. I live a life of privilege in a nice home in a safe community with a husband who has a good, steady job. We've got plenty of food, a comfortable, reliable car, good health care and money to spend—and I am White, which is not to say I am proud to be White. It's to say I can go to our local cannabis dispensary and procure two ounces of the best bud which nearly fills a large mason jar. I can transport it home in its white paper bag never giving it a second thought if I get pulled over for a traffic violation. At home, I can make it into an oil which I give to my son to lessen his seizures. I can tell friends about it. I can blog about it. I can feel relatively sure that I won't be arrested for possession and put in jail or have my son taken from me by Child Protective Services.

In a different world, one in which I were Black and male, would I make it past security even with my medical marijuana cards on me? Would someone call the cops because I looked suspicious since I was wearing a hoodie and I had my hands in my pockets? Would they believe I was buying the cannabis for my son's epilepsy? On the way home, would I be pulled over for, as some say, driving while Black? Would I be harassed? Would I, in my legitimate expression of anger and frustration over being questioned and doubted by the cops, be seen as belligerent, be cited, be assaulted, be put in a chokehold, be arrested, be thrown in jail? Would they shoot me while I reached into my purse to get my son's medical marijuana card? Would my last words be, "I can't breathe"?

questions (some rhetorical, others not)

will these early-morning seizures ever stop? will calvin eventually succumb to them? am i slowly going crazy? is my son already insane? when will so much of white america finally confront their ugly racism and bigotry? do i have traumatic stress disorder? has being a helicopter mama ruined me? will my patience ever give way? how can i stand my angry self? will life with calvin ever get better? why did that guy sitting on his porch look away from us when i caught his gaze? will folks ever stop gawking at calvin and me? will my son ever learn how to feed himself? will he ever be potty trained? will he ever be seizure free? when might i get a full night's sleep? am i being selfish? how do i manage living with my son's chronic illness and disability? when will police ever stop mounting violence against black and brown people? will contempt for the poor ever fade? will the occupant of the oval office ever be dead to america? when will women be treated equally? what will happen to the children of refugees? how can so-called leaders seem so unmoved by their caging of humanity? why are some folks so ignorant, cowardly and afraid of change? will calvin live beyond our years? will he die next week? next month? next year? how can i keep caring for him? could i really let someone else be his caregiver? will others prey on him? have they already? why do i feel such love and the next minute such contempt? will i ever get my life back? is this my life? what would life be like without him? will i ever return to rome? paris? madrid? will we ever leave maine? why do some folks believe in a merciful god amid such vast injustice and misery?

Photo by Michael Kolster

college nostalgia, sweet spots, pity eclipses, etc.

For a couple of hours last evening I was taken back to my college days, to a sweet, off-campus house shared by five students, complete with a shabby, yellow, vintage sofa and rooms decked out with second-hand tables and chairs. Our host let me peruse the second floor where, at the top of a steep, carpeted, slightly askew staircase, I peered into the dimness of a few rooms, their beds and floors endearingly strewn with piles of clothes like so many college students are wont to do.

Back in the kitchen, I cracked open a bottle of Côtes du Rhône and filled four stemless wine glasses, two of them plastic. We toasted our hosts, Ben and Meghan, wishing them well in the final few weeks of their senior year. We got their takes on life in Michael's photography classes, plus updates on their current projects. They told us of their post-graduation plans and dreams, including moving to Boston, of having turned down lucrative job offers that didn't speak to their hearts, and of their desire to live near new and old friends. They explained the dating app they've been designing, how it works, and shared with us its clever name, logo and marketing campaign.

It felt good to be sitting around a table with such bright, curious and engaged youth, felt good to be in an apartment that looked, smelled and vibrated so much like the ones I shared with my college roommates thirty-five years ago. And though I was delighted to be in the company of these generous souls who perfectly seared a huge filet mignon and tossed a tasty organic green bean and tomato salad, I was keenly aware of the pinch and sting I felt knowing I'd never be doing such things with my own child. Thankfully, however, the joy of communing with these happy, energetic, optimistic individuals eclipsed any pity I might've felt for myself. I left hoping they'd keep in touch and visit us from time to time like a few other beloved former students—Arnd, Ivano, Emma—did and have done over the years.

Back at home with our fifteen-year-old son who can't speak, wears diapers, still drinks from a sippy-cup, plays with chew toys, and is prone to seize, we are celebrating his own triumphs: Calvin has suffered only one seizure this month, and it was not a grand mal. He has had only three grand mals in the past thirty days, plus just three complex partial ones. And though I shouldn't get ahead of myself, if April keeps trending this well, it could be his best month seizure-wise in four or five years, despite taking only one pharmaceutical. I'm owing this success to having significantly reduced his Palmetto Harmony CBD oil from about five milligrams per kilogram of his weight down to about two mgs/kg, a strategy for success (finding its sweet spot) that its maker and many other parents attest to.

And so today, in the happy afterglow of last night's gathering, and during a day in which my own boy is doing quite well, I'm hoping good things for the Bowdoin College seniors who are about to inherit—and no doubt change for the better and for the common good—our crazy, effed-up world.

love and trouble

Most evenings, sometime between five and six, Michael and I head upstairs with our son to listen to the nightly news before putting him to bed. I sit on Calvin's diaper-changing table and Michael gets into bed with him to cuddle while he chews on his toys. Last night we listened to a rebroadcast episode of This American Life, a two-part installment called Unconditional Love. It was one that I vividly remember hearing for the first time when Calvin, now fifteen, was just two-and-a-half years old. That time, Michael and I had been listening to the second half on the kitchen radio, Calvin perhaps already asleep upstairs, and I recall weeping as I heard a couple describe the trouble of raising their autistic boy.

At the time of that initial broadcast, September 2006, Calvin had not yet received his PDDNOS (Pervasive Developmental Disorder Not Otherwise Specified) diagnosis, a condition found within the autism spectrum. Seven months earlier he had been diagnosed with epilepsy. In August of that year, he had suffered the worst seizure of his life—a forty-five minute grand mal which did not initially respond to emergency medications, prompting us to believe he might die.

By that point in Calvin's life, while toddlers his age were running about, talking, playing with toys, using forks and spoons, our boy could barely crawl, was just beginning to take first steps, had failed three antiepileptic drugs, and was still being spoon-fed and drinking from a bottle. The parents in the episode described their very large teenage son who was often violent. His twin brother, who did not suffer from autism, described a household full of loud noises, fear and stress. The couple went on to relate their difficult choice of whether to put their son in a group home, and what happened next.

Listening to this episode again was timely. Recently, Michael and I have been talking a lot about where we might live once he retires in several years. We discuss returning to our beloved San Francisco, but we have so many questions about such an endeavor: Where in the city would we live? How could we afford it? Would Calvin live with us? Are there group homes there for people like him? What kinds of assistance and programs does the state of California offer people as afflicted as Calvin? After years of living in a relatively small, college town in the Maine suburbs, would city life be too stressful?

The thought of living back in the Bay Area is both exciting and troubling. Exciting for its mild year-round weather, its amazing public transportation, its proximity to the beach, the bay, the Marin Headlands, its diversity and openness, and for the cherished friends we left behind eighteen years ago. Troubling for all the reasons I listed earlier. The thought of putting Calvin in a group home is equally thrilling and petrifying. I worry about his seizures getting out of hand. I worry his medicines will be mismanaged. I worry staff won't change his soiled diapers, linens and clothes. I worry about neglect as well as predators who might abuse him. Mostly, I worry about who will hug and love him unconditionally like we do. But I know I can't go on taking care of him forever; at some point—hopefully not for another twenty-five or so years if we make it that far—Michael and I may be too feeble to handle him, and/or we may not want to. Once Calvin graduates high school when he is twenty, perhaps it will be better for him to be in an environment with more activity and stimulation than we can offer him at home.

For now, though, we'll keep on keepin' on. We'll traipse around the house and yard with him in endless circles. We'll get up nightly to lay him back down and cover him. We'll give him extra meds in the wee hours of the morning if we expect a seizure coming on. We'll change mountains of dirty diapers. We'll bathe, dress and feed him. We'll burp him, like a baby, on our laps. We'll brush his teeth and clip his nails and wipe his drool. We'll hold him while he seizes. We'll endure his tantrums, mood swings, screeching, agitation, and perseverations—all of which, by the way, have improved on a higher dose of CBD oil. Whenever possible, we'll continue to bring him out into the world. Most of all, we'll keep loving him unconditionally despite his troubles, caring for him as best we can, and searching for other people and new places that will.

beyond reason and dreams

I dreamt of him the other night, the friend we lost last August. I could feel his strong body standing close to mine, could see the anguish in his brown eyes. In the dream, he hadn't died yet, but we all knew this was his plan; we all knew he had made up his mind and there was nothing anyone could do. In life, I wish I'd known how deep his anguish went.

With his dream-time coming to a close, I wanted every minute of him to be mine. But I knew there were others who felt the same, and I knew also that he needed space to himself, this friend-brother-son of ours. And so, after embracing, he kissed me and I released him to say goodbye to the others he loved. As I rode the streetcar to downtown San Francisco (I dream of that fair city almost nightly), I saw him riding inside a trolley headed in the opposite direction. Looking quite young again, his face thin and clean-shaven, his small ears and nose holding dark-framed spectacles, he was alone and weeping, his face buried in his palms. I understood then how hard his life had become.

Later in the dream we were together again for one final moment. I held him as if he were my child, then kissed his chest where in life a gorgeous tattoo had arced. The tattoo, a quote from Voltaire's Candide, had read, in French:

All is for the best in the best of all possible worlds.

But in my dream, his tattoo had vanished, revealing a smooth, blank expanse of skin, the one he had been born with. That was the last I saw of my friend-brother-son; he had said goodbye to me in dream-person.

I awoke melancholic, and yet yearning to go back to sleep and dream of him again. In dreams, we see people who aren't reachable, can hear and touch them. I understood how selfish I was to be glad to see him alive again, knowing that he suffered, and yet it pains me to think he's not out there living the life in which he seemed to revel.

While seated at a cafe later that morning, Michael and I saw Hector, one favorite of his former photo students who have kept in touch in recent years. As Hector approached me from behind, I watched Michael's happy surprise. I remained in my seat and leaned into Hector while he slung his arm around my shoulder. Resting my head against his side felt safe, familiar, like it did when I had embraced my friend-brother-son in the dream that morning, and in real life.

Later, I recounted my dream to Michael, told him how sad it made me and how much I missed our dear person. As I described my dream, Michael's eyes turned pink, and watered. Between us, Calvin was up to his usual antics—drooling, fidgeting, cackling. Watching Calvin, I pondered why a boy like him—intellectually and physically disabled, legally blind, incontinent, nonverbal, epileptic, autistic—goes on living with so little tangible purpose, goes on making me sometimes resent him, making me sometimes wish I were free of him, while another life, one with so much genius, vibrancy and potential ends so tragically early.

But then I remember the phenomenal essay, A Life Beyond Reason, written by my friend Chris Gabbard about his son, August, who was not too unlike Calvin. At the end of the piece, Gabbard, who has just written a memoir with the selfsame title, describes his son:

August ... is the most amazing and wonderful thing that has ever happened to me, for he has allowed me an additional opportunity to profoundly love another human being.

August died a few years later when he was just fourteen.

Having reread the essay, pausing on that last paragraph, I reconsider the despair Calvin often brings, and the grief I feel from having lost my hurting friend-brother-son to suicide. And instead of feeling sorry for myself, I feel grateful for having been able to know and love them deeply, and to have had the chance to tell them as much, in person and in dreams, past and yet to come.

Photo by Michael Kolster

pent up, awaiting escape

In so many ways Maine was not made for someone like me, for a fair-weather chick with a disabled, chronically-ill teenager who can't manage to walk all by himself, let alone in snow or on frozen tundra. And so every long, Maine winter we stay pent up at home when outside it's five or twelve or twenty or thirty-eight degrees. Frozen seas form in the wake of torrential sleet and rain, sheathing the earth in ice and crusting up pathways. Time outside is impossible for my child in conditions like these.

Yesterday, I wept in Michael's arms, lamenting this feeling of imprisonment, stuck in this place with a kid like Calvin who too often has seizures. I wished I were in California. If we lived in San Francisco—home for Michael and me in our late twenties and thirties—we could take Calvin anywhere quite easily on streetcars, on Muni trains, on buses, on the subway. In minutes we could be padding in the sand aside the Pacific, eating pizza in North Beach cafes, searching storefronts for the best dim sum in Chinatown. Year round there, days are mild and glorious. Parks, cafes and museums are numerous and bustling. Art is everywhere. Vistas abound, begging possibilities.

Here in Maine, January began well; Calvin had only two grand mal seizures by the sixteenth. However, the past two weeks have not been so good. Calvin has had at least five days with seizures in that span. He has stayed at home from school too often. His nurse called in sick. Monotony and melancholy set in. Worry knit its way into my brow. Sleep escaped me, though not from insomnia.

Understanding my despair, Michael came to the rescue as if for a wake, bearing extra attention, tenderness and understanding, and by delivering from "his" kitchen, multiple delicious dinners.

Today, as I look out over the back yard I see a veritable glacier in sun and shade. The rhododendrons have curled up, some tight as toothpicks, amid the frigid temps. All I can think about is spring and making escapes. Maybe I'll take a train south to see my sister. Hopefully I can get back to New York in May. In fall, I hope to make another a trip to San Francisco; too many things I missed while there last spring. All these journey's I'll do solo while Michael stays home taking care of Calvin. We can't easily travel as a family and still manage to enjoy ourselves, the places, our friends and each other, restricted as we are by our difficult boy and his needs.

On the phone yesterday with my dear friend Heather from California, she reminded me that every single day I take care of a sick child. Although I know this to be true, sometimes I forget, probably because Calvin has become my new normal. And though I love him to pieces, he's in great part why I often feel lost, stuck, hopeless.

Despite the fact it's windy and twenty-three degrees outside, I sit here on our green couch soaking up sun rays while trying to remember we're headed toward spring. Maybe it will arrive early. Perhaps we won't get much more snow. Hopefully, with more CBD oil, Calvin's seizures will continue slowly trending further downward. Perhaps I'll get more sleep.

And maybe, just maybe, come spring I'll escape.

Photo by Michael Kolster

weight of the world

October has been, in great part, kind of miserable for me and my son—grand mals mark up my calendar dates in orange highlighter; too many blue squares represent partial ones. My son has seized on nearly half of this October's days. He hasn't had a month this bad since January.

Again, I ask myself all of the pertinent whys. Again, I spend long, monotonous days nursing a sick kid. Again, I grieve the loss of a healthy, typical child. Still, I am grateful for our privilege and fortune, for our nation, our home, Michael's job, our food, our drink, our relative health.

Outside these four walls the world seizes. A journalist is brutally murdered in his nation's embassy abroad. Innocents are starving to death in Yemen from a famine aggravated by Saudi attacks using weapons we supply. Central American refugees are fleeing poverty, rape and homicide in search of a better life. Homemade bombs are sent to prominent democrats—People of Color, vilified women, and former presidents. Two African Americans were shot while trying to shop at a grocery store. Jewish friends are once again made into scapegoats. Tree of Life synagogue was shot up by an anti-Semite. Eleven people dead. The list of innocent men, women and children maligned and murdered for the color of their skin or their religion continues to rise. Some conservative White Christians sit back and bristle at the thought of their political leaders and pundits being confronted and harassed at restaurants, while never seeming to flinch at the oppression, abuse and murder of marginalized Americans by domestic right-wing terrorists and White supremacists.

The anti-Semitic shooter gunned down two intellectually disabled brothers—the innocent of innocents, the purest of the pure—reminding me of the first victims of the Holocaust who were people like my son Calvin: the intellectually disabled, the infirm. I hear too many Americans grouse about athletes kneeling during the so-called national anthem. I see too many efforts to suppress the votes of minorities. I watch videos of White women calling the police on Black Americans who are minding their own business mowing lawns, swimming, barbecuing, shopping, entering their own goddamn homes. It angers me, this continued harassment, abuse and disenfranchisement of my fellow Americans who work their asses off, pay their taxes, live good lives. They're far better men and women than many of these politicians are.

Sometimes I wonder if Calvin's seizures are—like the gravity of a full moon—triggered by the weight of the world. I wonder if they'll ever stop, or if they'll keep marching right through. With his and others' suffering in mind, I scour the internet for images of Yemen. I find the photo below. I think to myself what we all should be thinking—this could be my child.

Photo by Abduljabbar Zeyad/Reuters

the rest of us

Outside raking, I try to make sense of this effed-up world we're living in. In the cool glow of an overcast afternoon, I work up a sweat turning needles into piles of copper, all the while conscious that wealthy White Christian conservative men (and a smattering of their female counterparts) are brazenly cheating and lying, trying to control, disenfranchise, oppress and legislate the lives of the rest of us.

Who are the rest of us? I'll tell you: women, Black people, Latinos, Native Americans, Muslims, atheists, Jewish people, old folks and the infirm, mentally or physically disabled folks, young folks, students, union members, artists, journalists, teachers, scientists, environmentalists, public employees, poor people, gay, lesbian, bisexual and transgender people, homeless people, former inmates who have done their time and paid their debt to society or should have never been incarcerated in the first place, immigrants, pregnant women, and people who have preexisting conditions like my little boy.

My son Calvin by the way, because of his disability, cannot—nor will he ever be able to—vote; the rest of us must do it for him and for each other, or risk continued disenfranchisement by the powerful few who have nothing to do with the rest of us except to exploit. They have shown us what matters to them, which they will protect at any cost to their constituents and to the earth itself: money, power, control. They have proved incapable of walking in our shoes. Vote them out. Vote now.

rule number one: do not obey in advance

I'm away from home having traveled nine hours to attend a wedding. My time is not completely my own, which is why you have not heard from me. I should tell you that Calvin is doing okay and has had some of his best nights of sleep since adding a nighttime dose of Palmetto Harmony CBD oil last week.

When I woke up this morning while the others slept, I read my dear friend Elizabeth Aquino's blog, a moon worn as if it were a shell. She, like I, writes about her disabled child afflicted with severe epilepsy, intermingling her stories of despair, frustration, gratitude, perseverance with more than a smattering of the politics of social justice; she is a kindred spirit.

Her post is so powerful, expedient, and cogent I had to share it here:

Rule Number One: DO NOT OBEY IN ADVANCE
by Elizabeth Aquiino

Sophie got a new wheelchair yesterday, thanks to her private insurance which is governed by the Affordable Care Act's protection of pre-existing conditions and her qualification to receive Medi-Cal which helps to pay for any out-of-pocket expenses. I am filled with gratitude for these things and well aware of my immense privilege, particularly as these things are not afforded to everyone and are now under threat for everyone.

The week after Trump was inaugurated and became the POSPOTUS in 2017, my therapist (I know, LA, and all that stuff) gave me two pieces of paper stapled together, titled Twenty Lessons from the Twentieth Century.* Written by Tim Snyder, an American historian of Central and Eastern Europe and the Holocaust who is a professor at Yale, the list draws on the experience of those who lived before, during and after the rise of Fascism in Germany and Communism in the former Soviet Union. I think we're well past the rise part in Trump's America and into the fascist part, so I'm reviewing the lessons and was struck, especially this morning, by the first one:

Do Not Obey in Advance

Much of the power of authoritarianism is freely given. In times like these, individuals think ahead about what a more repressive government will want, and then start to do it without being asked. You've already done this, haven't you? Stop. Anticipatory obedience teaches authorities what is possible and accelerates unfreedom.

Despite the ease of it (for those who are privileged like myself), caving to despair or cries of how fucked we all are, we just can't. I know that I have "obeyed in advance" many times during my life, have handed power or agency over to not just institutions but to people in my family and even people that I love. Part of that is due to deep cultural influences, to patriarchal systems, to my own apathy or cynicism. It's a slow process toward acknowledgement of that anticipatory obedience, even in my privilege, yet having a child with severe disabilities has pushed me along that path of self-awareness and agency a bit further. 

When I heard yesterday that Justice Kennedy was retiring, handing the POSPOTUS the chance to ensure a draconian legacy of conservatism on the Supreme Court, I did feel despair, particularly about the threat to women's reproductive rights and the Affordable Care Act's protection of those with pre-existing conditions. My despair shows itself in biting humor which isn't funny at all. I imagine Sophie driving a car, proving her "worth" in lieu of getting "free hand-outs" through Medi-Cal, yet unable to get insurance to pay for the drugs and treatment of her life long epilepsy. I imagine her getting raped by some free enterprise private contractor in an institution for the handicapped and not able to have an abortion because it will be illegal. I crack sick jokes because it helps me to cope and perhaps jerks people out of their malaise and into action. 

Here's the thing.  I am thinking that we're entirely not fucked, that we're actually in a fight and that we have to stay in it. We have to stay awake. We can't succumb to despair. We can't obey in advance.

It will be me, maybe, actually driving that car with Sophie in it and any woman or women who needs to go to a state that still guarantees their reproductive freedom.** Sophie is very quiet and capable of holding great secrets. I am very loud.

*  You can easily look up the lessons, but I typed them out on the blog HERE
**Here's a list of things you can do if or when Roe v Wade is overturned.

Photo by Elizabeth Aquino

piece of cake and other idioms

This morning, I narrowly escaped a bruised or broken nose, a black eye and a fat lip. After Calvin's second grand mal in less than twelve hours he began acting as if he were going to launch into one of his frightening night terror episodes. These events are difficult to diagnose; I don't know if they are migraines or withdrawals or panic attacks or hallucinations or some kind of seizure. Perhaps they are a combination of all of the above. Thankfully, the acetaminophen suppository seemed to help, but not before he roughed me up and head butted me several times.

Last night was the second time this month Calvin suffered a grand mal only an hour after his bedtime meds and after falling asleep—a rare time for him to have a fit, though not unheard of—and the second time he had seizures on consecutive days totaling five grand mals already this month. I'm cautiously optimistic, however, about what it might mean that we have not seen any partial complex seizures in over four weeks. If we can virtually eliminate these, Calvin will, in any given month, have less than half the number of his average of monthly seizures. Still, the grand mals possess him, and I feel we are running out of viable, reasonable options for their suppression.

Often, I tell folks that if it weren't for Calvin's epilepsy—the dread, the scores of seizures, their side effects and dangers, the drugs he has to take which I have to order, dispense and give, their side effects, the cannabis oil I make, dose and administer, the sleepless nights due to seizures and drug side effects, the cumulative toll from stress—taking care of him would be a piece of cake. Seriously, without epilepsy, Calvin's non-verbal, incontinent, legally blind, uncoordinated fourteen-year-old self would be, in comparison, incredibly easy for me, a veritable walk in the park. Without epilepsy and its drug treatments, Calvin would likely walk better and be worlds ahead developmentally. Hell, he might even be uttering words and stringing some of them together. He'd likely sleep far better and not suffer bouts of mania, withdrawal, panic or the night terror thingies. I wager his bowels would work without having to "supp" him every day. Maybe he'd even be potty trained. A kid like that I could no doubt take care of blindfolded with one hand tied behind my back. No joke. If that kind of kid—the one I just described—sounds like a lot to handle, then perhaps you get some sense of how debilitating, limiting, harrowing, stressful and exhausting epilepsy can be for a child and their family.

So, today, while it is gorgeous and mild outside, I am walking around the house like a zombie. I am not on a cake walk. Right now Calvin is in his bed with a case of the hiccups. He's got a low-grade fever, doesn't want to eat or drink, is quite agitated and has several other harbingers of another seizure on the horizon. In other words, I am not convinced he is out of the woods yet. But still no sign of the partial seizures which usually appear in the wake of grand mals. That is good.

What is also good is that I don't have a black eye, a fat lip or broken nose ... yet. But I wish today with all my might that Calvin and I were taking a walk in the park.

Photo by Michael Kolster

trading places

Every day something prods me to consider my fortune, whether it be stories of cities, states or nations experiencing water crises, refugees fleeing war-torn countries, or images of starving children.

On my way to the doctor the other day, having just thrown on a hat, rubber boots and a grubby coat over my "yoga" pants, a cop pulled me over for doing a California stop. It had been years since I'd seen flashing lights in my rearview mirror. While calling my doctor to say I'd be late, I got distracted, so when I saw the large officer standing at my door, I flinched. When I rolled down the window he asked me for my license, insurance and registration. In the cold, I fumbled with my wallet and dropped my license near my left foot. Reaching down to retrieve it, I suddenly imagined what might happen to me if my skin were Black, especially if I were male and—perhaps—in a different part of the state or country. I've seen too many videos of Black men—one or two licensed to carry, though most not armed at all—being shot dead for less. And though I've imagined the scenario before and am cognizant of the double standard, at that moment I viscerally experienced but a sliver of my White privilege.

It may seem odd to some that, while I have spent most of my adult life as an autodidact of the struggles of others, raising Calvin has expanded my mind further on the subject of racial injustice. I find it interesting, and lamentable, how many folks I grew up with and others I encounter deny racism exists, deny their implicit bigotry, continue to stand their ground, blame the victim, shame the kneeling player, change the debate when speaking about police violence against Blacks, institutional racism, or the righteous Black Lives Matter movement. Yesterday, I read an important piece by Tim Wise explaining the history of this kind of behavior called, White Denial is an American Tradition: It's Time to Bury It. I highly recommend you read it and get up to speed.

Because so many Whites bristle when speaking about racism, and because it needs to be discussed and explored before it can be solved, sometimes I frame discrimination, oppression and it's history differently and in a way I think some might begin to relate. I say:

What if Calvin were your child and he were sequestered to a special school for disabled children only, a school which lacked the funding to provide his basic needs, much less help him succeed? What if he were physically barred from buses, restaurants, restrooms, beaches, shops, pools? What if society were taught to fear, mistrust and hate him because of his difference? What if he and others like him who might be more able routinely grew up and struggled to get the job, the raise, the apartment, the loan they hoped and worked so hard for? What if he couldn't achieve these things because society saw him as bad or strange and instead—as a minority—he was ripe for neglect, oppression, exploitation?

I wager most everyone these days would say that those scenarios are morally wrong; I'd agree, though some of them exist to this day. I also wager most folks—at least publicly—would think it okay for me and Calvin to protest such unjust treatment. So, I ask, why is it okay for African Americans to endure the same injustices? And why are so many White folks compelled to mistrust Black narratives, deny those inequities, dismiss their truths, condemn their peaceful protests no matter the platform, squelch their free speech, curb their right to vote? I can only begin to believe it's rooted in ignorance and the fear of trading places, of being the minority. But doesn't that in itself prove the point?

After the cop ran my license he returned to give me a warning instead of a ticket, even though I'd clearly run the stop sign in a school zone at first bell, no less. When I'd seen his flashing blue lights and scrambled to make the call, my heart was pounding nervously, and not because of my infraction. I had imagined trading places, had tried to envision how I'd be feeling in that moment if my skin were dark and my hair were somehow different.

Postscript: While I am on the subject of trading places, I can't recommend this article enough either, about affirmative action and the myth of reverse racism.

Photo by Roger

in my dreams

Sometimes, in my dreams I can breath underwater. Other times I fly. I just aim my face to the sky and slowly lift off the ground. Most often I dream of flying at night, looking down on darkened houses, purple beaches, and the tops of swaying evergreens, sometimes having to dodge and dart between power lines. Mostly, I am in control of where I soar, as if on thermals, and I alone posses this gift. Often, I am trying to help lost souls find their way, navigating and calling to them from above the earth. In other dreams I try to hide my gift of flying from villains who would attempt to shoot me down.

Other times I dream of Calvin having seizures, only to wake minutes before he launches into one.

Once in a blue moon I dream of Calvin talking to me.

Last night, though, I dreamt that I discovered ropy scars in each crease between Calvin's thighs and hips. These wounds were due to the rigid plastic tabs of his diapers being positioned too low and therefore cutting into his skin. I winced when I found them, then felt a sinking in my gut thinking my poor boy suffers so very much.

This morning, after the nightmare about his wounds, he had another grand mal on the heels of yesterday morning's one. December had begun fairly well, with just two grand mals by mid month and only one day with a spate of partials. But epilepsy has a way of catching up, of not allowing much down time, rest time, time to recover. If Calvin is not having a day with seizures, it seems he is ramping up to or recuperating from one.

As I lie next to Calvin in bed after he suffers these fits, and in my wicked state of chronic sleep deprivation, I sometimes lament my life situation—stuck in this flat New England town with little to do, stuck in my writing a bit, stuck indoors with a seizing child, stuck in this cold, somewhat isolated part of the world. I lament the state of things in this nation with its sick president and its hypocritical, greedy, disingenuous republican congress bent on twisting the truth just like their unhinged leader can't help but do. I lament the growing divide between the working masses and the wealthy few, the damage cabinet members are doing to the departments they've been hired to marshal, the turning of the clock backwards to a time when polluting earth, air and rivers was okay to do, when women's rights were kicked to the curb, when overt racism and mob justice ruled, when only white men reigned, when the disabled weren't given a place at the table, when the only people whose religion was protected were Christians, and when folks couldn't marry whom they wanted to.

I want to float on a thermal into the future where none of this is true.

In winter, a few nights each week, Michael and I watch the PBS news hour where we see stories of the world we wouldn't see on network news. I watch accounts of war, famine and genocide. I watch stories of the injustices of racial and religious discrimination. I see evidence of poverty and corruption, disease, neglect and mass starvation. I choose to bear witness to these avoidable atrocities—pain, anguish and suffering which our current administration's rhetoric and policies exacerbate. I am angry. I am tired. I am ashamed of the contemptible president and GOP congresspeople who claim to be leaders of this beautiful nation and all of its people, not just the few. They are not champions of truth, justice or morality.

Thinking back to my dream about Calvin's scars, I wonder what it means other than it is something of concern when he is in the care of others; I've seen the diaper tabs cause red marks and welts that must hurt. Then, I think about flying and of the free feeling of breathing underwater, and I wonder when we'll surface from this nightmare of relentless seizures, this nightmare of a depraved and hurtful regime.

Photo by Michael Kolster