like no other

Like wax off of a candle, the days drip, drip, drip. In profound ways, each one is nearly identical to the last and will be very much like the one after. Events beyond the mundane rarely happen. This trend has lasted for nearly two decades and will likely continue for at least as long. I'm not completely sure how I've been able to or will deal with the monotony of it all.

The only real change is that my boy is older and bigger. And yet, at eighteen, every day I still have to spoon food into his mouth. Change his diapers. Give him his medicines. Bathe him. Dress him. Walk him around. Get him to poop. Wipe him up. Put him to bed. Listen for him in the night. I must watch him knit his fingers, poke his eye, stare at the sun, suffer miserable side effects and seize. I have to listen to him moan and grouse and screech and feel him grab and scratch at me. Now and then my patience thins, and when Calvin stretches it to its limits, I become ugly both inside and out. Perhaps you know what I'm talking about.

Monday was one of those days. Though the weather was stellar for riding bikes, boating, fishing, hiking, swimming or going to a park, I was stuck with an out-of-sorts son making circles inside the house, in the yard, in the car. Despite the Independence Day holiday, Michael was off taking pictures, because what is there to do that is any fun for us as a family? It seems we've tried it all before and have met mostly with dismay and frustration. With Calvin in tow, beaches, restaurants, cafes and strolls are all virtually impossible. Adventures of any kind are a major undertaking and often end in disappointment since our son is incapable of sitting still or attending to any activity or subject. I wish that were hyperbole.

And so, again, I sat at home feeling sorry for myself. Perturbed, I pined for an escape—San Francisco, Seattle, New York, Paris, Lisbon, Rome. Places in which I used to live and those I've visited and roamed.

Monday morning, Calvin and I went on our daily drive—a kind of respite for me even though I'm not alone. He bitched the entire time like he used to all too often. On our way home, we drove past a friend's house. She and another gal were outside soaking in the gorgeousness of her perennial garden, lounging in the shade draped in a couple of butterfly chairs. Their sun hats seemed to float over the day lilies beginning to bloom. I felt a pang of jealousy. In waking hours, Michael and I can't take our eyes off of Calvin. We must take turns watching him, staying within arm's reach so he doesn't fall. Can't leave him unattended for a second unless he is secured in his safety bed, and even then we have to listen for him over the baby monitor. There's no escaping him. Can't find real relaxation and solitude. Can't send him anywhere on his own. In that way, we don't have much freedom unless he's with his pal Mary or at school.

In the late afternoon when Michael got home, we all drove to Pennellville to pick up our friends' farm share since they're out of town. Afterward, we drove out to nearby Simpson's Point which is a regular stop on my morning drives with Calvin. We pulled into the turn-around, parked and watched the bathers from the car. Michael spotted a friend and went to say hello. I got out of the car to take a few nearby photos while Calvin sat in the back seat gnawing his toys. Our friend's wife emerged from the waters and came to visit with me. So that I could keep an eye on Calvin, we stood next to the car catching up about our boys, our gardens, our various goings-on. Eventually, I openly lamented the monotony of my days with Calvin. Then, in what I believe was a loving and concerned attempt to level the playing field, she told me that the sameness of days is something everyone experiences, that it was that way for her at work, too. I told her, with gratitude, that I hadn't exactly thought of it in those terms before.

But late that night, after I had gotten out of bed for the third time to lay my restless boy back down, cover him up and to wrestle his bed pad which had gotten untucked and buckled under him, I had a thought: the monotony of my days is wholly different than what my friend was talking about. This was an eighty-plus degree holiday weekend, a day made for barbecues and picnics, watching parades and fireworks or taking a dip in the cove. Michael, Calvin and I were there in our street clothes. We had simply been on an errand and had taken a detour. We were not sunbathers, swimmers or waders. Our teenager was not frolicking in the water with his buddies. We were not there reclined in fold-out chairs reading our favorite novels or sipping iced drinks from a thermos. We were not resting under wide-brim hats in the shade. Those are things we never do, don't have the luxury of doing with Calvin because he can't sit still. We were doing what we always do when he's around, which is practically nothing beyond driving the back roads. And yet, we were grateful for our astoundingly serendipitous "adventure," and to get a slice or scent or taste of what others were able to immerse themselves in, some of them perhaps for hours.

After a short visit (we had to get home for Calvin's evening seizure medicines and early bedtime, otherwise we would have lingered) we said our so-longs to our friends. But before we drove off, I decided I should at least test the waters. I padded down to the boat launch past folks in bikinis and tanks, trunks and sunglasses. Before we had embarked, by a streak of luck I had slipped into my flip-flops for the first time this summer and had rolled my jeans up. I stood at the water's edge and let the gentle waves lap over my feet and ankles. It felt refreshingly cool, though not too cold for a swim. There on the point, I closed my eyes for a moment as if no one were around. Tipping my head back, I felt the sun and the salty wind kiss my face and neck as if a lover. For a split second, I let the elements take me somewhere far away and exotic.

And as I finish writing this, I realize Monday had turned out to be a day like no other.

Simpson's Point

slice of hard life, bits of fun

my kid falls and breaks his hip. he undergoes surgery to fix it. a four-inch incision and three steel screws jammed through his femur. some days later, he gets feverish and sick. he has three grand mals in two days. the same number in the entire month of april.

everyone is under the weather. snotty, runny, stuffy noses, though testing negative for covid. even the dog snores. unruly, drunken students traipse by on their way to and from parties between eleven p.m. and two-thirty in the morning. it's hard to get a decent night's sleep. i lie awake worrying about the serious and mundane. i think of my huggy child and how i should farm him out to nursing homes as a therapy kid. if only he didn't have innocent fingers good for poking out eyes and scratching necks.

luckily, an afternoon nap (a rarity) is like a pat of butter smeared on a hunk of freshly baked bread. it's a cloud. it's sugar dissolving into warm liquid. a salve and a salvation. the sounds of daytime waft through an open window: a young man shoveling gravel; songbirds; light traffic; lawn mowers. i deliciously drift in and out of the dream world, my husband and child saming me in the room next door.

i carry my ninety-two-pound child down the steep flight of stairs from the second floor where we've been camped out for five weeks which feels like a chunk of forever. he walks a few yards on the grass holding my hands as i step backwards, guiding him. i lift him into his stroller. buckle him in. push him around the garden taking our millionth loop. he paws an alberta spruce. takes his glasses off and begins chewing them. i can see he's done. he goes back up the stairs with a lot of help from me pushing his bum. he's happy to get back into bed again where he's free to do practically nothing.

he's supposed to go back to school on wednesday with walker and wheelchair and some vigilant humans. still, i'm nervous. he's not walking that well. his gait is slanted. his change of direction and pivot is hitched. i don't want him to get hurt again. it's a natural concern. but i need a rest. i miss my pennellville vistas, walks and runs. i miss my garden. i miss time and space spent alone. miss doing things for myself. miss my friends.

while i'm changing a wet diaper, i hear a barking dog. i look outside the open window to see if i can spot the snarling pooch. i see my neighbor walking his achy, ancient beagle who, by the way, isn't the culprit. half chuckling, i bark at him (my neighbor, not his dog) as he looks around in puzzlement. i bark and laugh again, and can see from my perch as he beings to understand, though still can't tell where i'm coming from. i call, "never a dull moment when you live next door to christy shake." he laughs and says something about crazy neighbors. i'm amazed and delighted, despite this slice of hard life, i still have a knack for humor, and that some people get my jokes.

besieged

Last night just before eight, my son began to seize. While his body convulsed, his lungs were cut off from oxygen for a minute or more. His lips, fingers and toes turned blue. Watching him, I thought of the dusky, lifeless face and hands of the schoolboy who was shelled by Pootie's Russian troops over the weekend. He died in the street beside his mother and sister while they were trying to escape. Others died too. Here at home, after his spell, my boy simply drifted off to sleep, safe and sound.

Of late, my thoughts are almost exclusively with Ukrainians. When I walk alone on the back roads, the skies are free of enemy aircraft. I'm keenly aware of not being shot at or shelled. I wonder if this Maine landscape looks at all like Kyiv or Mariupol. Wonder if those places, too, are beginning to thaw. Halfway through my misty morning walk, at about the two-mile mark, I feel a dryness in my mouth. I think about living in a city under siege, surrounded by an enemy intent on strangling any and all sustenance. When I catch droplets of mist on my tongue, I know my thirst can't be quenched, and I wonder for how long a body can go without water. Not long.

My thoughts turn to my boy who is only five-feet one and ninety-two pounds; still, he's a giant compared with the puny little unloved men who manage to stay in power only by strong-arming, issuing threats, telling lies and spreading propaganda. You know who they are. They use the term "fake news" with reckless abandon. They brazenly lie to their constituents. Enrich themselves. Rewrite and whitewash history. Engage in ethnic cleansing. Squash the tenets of truth and justice. Commit genocide. I don't believe in the place, but if it exists, I hope they go to hell, and soon.

My nonverbal, incontinent, uncoordinated, epileptic, autistic son is so much better than them. He not only loves unconditionally, he very literally envelopes people with his affection and is afraid of no one. Most of all, he doesn't discriminate. And though his antics and afflictions often mess with my well-being, he's not like the effing fascist autocrats bent on ruining the world with their vile, narcissistic doings.

Meanwhile, I weep while reading the good news. News about American veterans heading to Ukraine to help in the fight against Pootie's fascist tyranny. News about Ukrainian troops getting married under gray skies like these, surrounded by friends and rocket-propelled grenades and antitank missiles at the ready. News about the secretive vigilante cyber group known as Anonymous which is hacking into Russian streaming services and State television to broadcast footage of the bloody and destructive war their president is waging. About the flood of Airbnb bookings in Ukraine by people abroad not intending to check in but hoping to help ease the suffering of the besieged.

After calvin's seizure, as usual, I woke up several times. It was quiet. I pulled his cover up over his shoulders, gave him extra cannabis oil to thwart any further spells, gave him a few sips from his bottle, then went to get a drink of water. Outside the bathroom window I saw Orion in the southwestern sky with his belt and club, shield and sword. As always, I imagined him not as hunter but as protector of underdogs. And I thought again of Ukrainians—each one of them underdogs besieged in their own way, cut off from family, democracy, freedoms, food and water, husbands, sons, fathers, brothers ... breathing—hoping they can withstand the constant pummeling somehow, just like my own little Calvin.

geek on the back roads

For the first time in what seems like weeks, I went for a run. The roads were clear of snow and ice, and Calvin was in school. It was only thirteen degrees, and I'd never jogged in such cold, but when one lives in Maine and wants to run outdoors, there isn't much of a choice. Luckily, though the air felt damp, it was mostly still. I suited up, then headed out to my beloved Pennellville and parked the car near the point at the side of the road. Right out of the gate, Smellie took off and ran amok, zigzagging from one side of the road to the other, sniffing whatever there is to smell when everything is frozen. When we passed one of two dog walkers, just to be considerate (because Smellie is the mellowist dog in the world unless you're a tennis ball, chipmunk or squirrel), I clipped her on the leash and she trotted alongside me quite well. I jogged on the smooth, flat roads at a steady pace, feeling light and lithe and kind of cool (groovy, not chilled) despite the fact I was clad in mixed layers and looked like a total geek: big, boxy, patched-up, dirty, drab, puffy jacket; dingy-white, stretched-out, high-water joggers; long, black leggings underneath; bright teal sneakers. At least the chunky wool hat Meggan knit me looked good. But I stayed warm, even my hands, which were gloved, fisted, and drawn into tattered, apish sleeves.

Nearing the halfway point, I ran into my friend Lauren walking her dog. I stopped to give her a big, long-overdue hug, making sure to exhale away from her face, because—you know—Omicron. We chatted for a bit and vowed to somehow get together soon for a homemade cocktail, then I took off again. 

Twice along the way I stopped briefly to take a couple of photos before my phone crapped out in the cold. I've not often seen the early(ish)-morning sky at Pennellville, and today—not unlike every day I visit there—the scenery didn't disappoint. On my way out, clouds spread across the sky in a way that was wonderfully moody, both in color and how they dissolved into each other as if watercolor or smoke. On my way back, I watched a sliver of lemon sunshine squeeze itself through a gap in the eastern horizon. Not surprisingly, it looked and felt sublime.

In all, I went four miles, which is no big deal, but I'm thankful I could do it at all (I hope to perhaps run this summer's Beach to Beacon 10K, if I'm lucky.) As for Smellie, well, considering she's nearly eleven, her performance was amazing. Perhaps most noteworthy is that I didn't worry or think about Calvin even once until my cell phone failed on the way back, and even then I wasn't too bothered since he had had a decent morning and is in good hands at school.

At home now, Smellie is totally conked out. I'm here writing, my feet up on the green couch, listening to music and feeling the warm afterglow of a good workout, plus a slight high some attribute to endorphins while others believe might be endocanabbinoids. It has been seven days since Calvin's last seizure, which isn't very long, but it's better than three consecutive days of the terrible cluster-you-know-whats. Michael will be home soon with groceries. I've just put a fire in the stove. A small glass of red wine is imminent, and I'm already looking forward to tomorrow morning, which is when I've planned another running date with Pennellville.

oh, pennellville

it's nearly ten o'clock. barely as many degrees out. ruling the day are crystalline skies and sunshine. no hint of a breeze. even so, i bundle up: long underwear, jeans, wool sweater, scarf and hat. shearling boots, gloves, grayish puffy jacket. for the first time in a year, i pack my panasonic. i miss its reliable wide-angle capture. it catches more of the world. gives a different perspective.

calvin is at school, so i turn on my phone's ringer. then smellie and i drive to the point by way of pennellville road. not far from home, it has become one of my favorite places in the world. i park the car by the side of the road. with smellie off leash, she and i walk briskly in the cold. fists balled up in my pockets. squinching my toes back and forth to better make the blood flow.

unlike life, the terrain isn't difficult—no traffic. no obstacles. gentle slopes. roads are paved wide and flat and smooth. besides smellie, i'm all alone. the feeling is sensual and splendid, like when i used to travel solo far from home. a slim gravel margin runs between trench and road. i pause to study a frozen stream running from a culvert. treading tentatively to see if the ice is firm, i punch clear through. having grasped a nearby fencepost, i narrowly escape stepping into the frosty pool below. chuckling, i feel a bit like my former kid self. oh, to be so free again! oh, pennellville, to call you my own!

out here in the peace and quiet, sound travels as if on the backs of birds. out here, i can see bits of ocean kissing the horizon between stands of trees on a hill. out here, the sky is big and magnificent, like the west i ache for, love, and still think of as home. out here, it's like there's no care in the world. pennellville, you are my home away from home.

as i walk and frame and shoot, i think about the past two years—the damn pandemic; the fourteen months my son stayed home; the scores of seizures he has endured; the conversations about elections, insurrections, masks, vaccinations, conspiracy theories, religion and its pitfalls, the true meaning of virtue. i wax nostalgic about the drives we took. the friends i've made—and hope to make—along the way; the ones i've kept and the ones who long ago somehow became estranged. pennellville, i want to whisper you every name.

in all, the dog and i go four miles. nothing to write home about. still, it's the furthest i've roamed since taking calvin out of school for three weeks after some brushes with covid. luckily, he didn't get infected. my ankles and feet are slightly sore. i'm not used to these boots; still, i could return again tomorrow. could see something new from one day to another—icy bubbles; frozen grassy waterfalls; red berry boughs; stately, naked oaks; bald eagles; snowy owls; dog walkers in hiking boots and puffers; runners of all ilks clad in myriad colors, each with their own distinct gait. 

oh, pennellville, thank you for giving me the space and freedom i can't easily get in other ways, during my virtual and prolonged lockdown with calvin. thank you for your steadfast offering of sanctuary and repose. for your quiet attention and embrace. for your lack of judgement. for your unwavering charm and beauty, no matter the season or weather. for allowing me to look upon you unabashedly and ponder anything. to see myself reflected in your skies and trees, pools and meadows. for the room you so freely give me to see and dream and feel anew.

freedom to me

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

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

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

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

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

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

windows

Deep in dream comes the whistle of a train. It's one of few sounds—plus wind chimes, foghorns and rain—that I don't mind waking to, even at four o'clock in the morning. The well-composed symphony of notes, the crescendo, the low rumble and roll of steel wheels on burnished tracks soothes me. I imagine myself in one of the cars headed somewhere—almost anywhere—peering out the windows at countryside, cityscape or coast. I drift back to sleep again until five or six when I must get up to give Calvin his seizure meds. In this house, sleeping in is not a thing.

Earlier, I saved another stink bug, at least I think so. She'd been lingering inside the upstairs bathroom for too long. Like me, she'd been traipsing in circles. I cupped her in my hand and opened the window, tossed her out hoping she'd fly away like the last one. But she was in no shape, and fell to the ground like a pebble. Perhaps she's tough and survived the fall. I'd like to think so.

Milder weather is coming in dribs and drabs. I walk Smellie past Woody's old house thinking that soon it might be the kind of evening we'd be sitting on his porch drinking whiskey together. Last spring we were visiting each other from opposite sides of a window. By june he was gone. I miss him so. 

Mark and Kathy peddle past on their tandem smiling and calling my name. Kathy blows me a kiss. I blow one back to her. Turning my head toward the glare of a sinking sun I see Jill a few houses down standing in her driveway waving both hands at me. I return the favor. At the crosswalk Nan slows, turns then stops. She rolls down her window. Behind my mask, I crouch down to see her better. She says she's eager to get working in her garden. Her perennials are likely the most beautiful in town. I tell her I miss seeing her. In maine's window between late spring and early fall, we often stand in her yard—one she's tended for probably sixty years—regarding the iris and lilies, zinnias, geraniums and dahlias. She seems to know all the botanical names of her many varieties. Every year she gives me a bunch of poppy seeds and a clump or two of something I covet for my own garden. I try to return the favor, but what I have to offer pales in comparison.

Calvin is on his thirteenth day with no grand mals. We rarely see focal seizures anymore, though they're not completely gone. He's changing, growing like crazy. He's doing better on the potty and beginning to wash his hands with a bit less help. His balance is better, his walking more sure. I've begun to peel myself away from him for brief moments in the house and yard. It didn't used to be that way. For seventeen years I've had to always be within arm's reach of him. The weaning gives me tiny windows of freedom. Still, I yearn for so much more.

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.

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

gut punches (and others)

Reading the news Friday night felt like a gut punch.

"Oh, no!" I cried out, upon learning of Supreme Court Justice Ruth Bader Ginsburg's death, my verbal reaction reminiscent of Michael's response when he heard that a dear friend had taken his own life.

On the heels of my grief and disappointment over the news of RBG's passing came the regrettable recognition that the current administration would move quickly to replace her, no doubt with a nominee apt to, at the very least, kill the Affordable Care Act and its mandate covering preexisting conditions, broaden avenues for continued voter suppression, and subvert (further) the body autonomy of American women.

My mind went into a frenzy recalling myths about abortion and the ways in which conservative men, for the most part, have for decades worked hard to politicize and legislate (away) women's reproductive health and freedom by limiting access to birth control, and by further diminishing the reasonably small window in which most abortions are allowed to be performed. Republican-led, mostly-male legislatures continue their aim to tighten regulations and mount burdensome hurdles so as to strictly limit the number of the nation's abortion clinics making it difficult for women, especially those who are poor, to access safe and legal procedures. Consider, too, the disingenuous pro-life claims, borne out in attempts to stifle proven, best methods of preventing unplanned pregnancies and abortion, such as free and accessible contraception, family planning and comprehensive sex education. Despite the fact that neither the Old Testament nor the New mentions abortion—not one word—many people cite their religious beliefs as the basis to condemn it. Noteworthy, too, is that Christian women make up nearly two-thirds of those who choose to have an abortion.

I became further vexed pondering the fact that many who profess their belief in the sanctity of life also support capital punishment—state-sanctioned murder—while still others suggest allowing abortion in the case of rape or incest, thereby belying their pro-life claims. And what of the growing number of Americans like me who aren't religious, who don't buy into the notion that a zygote or fetus has more rights than its pregnant mother, who don't condone the legislative and punitive coercion of women to carry unintended pregnancies to term? Should the religious freedom of some Americans supersede the basic human rights of others? I don't think so. Moreover, consider the fate of malformed fetuses which will endure brief though agonizing lives if their mothers and fathers are not allowed the option of sparing them certain pain and suffering after birth.

All the while—incomprehensibly, if not for the current patriarchal paradigm—the subject of making accountable the male impregnators never seems to enter the political discourse or legislative debate regarding abortion. How convenient. This continued strangling of women's reproductive rights and personal empowerment and freedom is insufferable—a literal and figurative gut punch. And the stomach-churning truth is that now, with RBG's death, the specter of yet another diehard conservative on the Supreme Court makes women's hard-fought sovereignty as precarious as ever.

Obviously, I'm pro-choice, which is not the same as pro-abortion. However, were I aware early in my pregnancy the extent to which Calvin's brain anomaly would lead to his miseries, I wonder what I would have done. I think I know, but I can't be certain. Regardless, I don't believe I have the right to decide the outcome of other women's planned or unplanned pregnancies, which impact their mental and physical well-being, the stability of their families, the trajectory of their careers, and the health risks to themselves and/or their unborn.

At a time when over three-quarters of all Americans support a woman's right to choose, and when one in four American women access abortion, the passing of Justice Ruth Bader Ginsburg leaves American women vulnerable to a handful of privileged, conservative, male, Supreme Court justices, all with Catholic roots. As deft as these conservative justices are on the Bench, I have my doubts that they are capable of fully considering, from a woman's unique perspective, the sweeping risks and considerations, the threat to very private, personal and constitutional freedoms and equal access to life, liberty and the pursuit of happiness that unintended, unhealthy or hopeless pregnancies—or a government mandate to take those pregnancies to term—may represent.

As I mused on the terrible dilemma of losing one of America's best champions of gender, religious and racial equality, I recalled The Notorious RBG's use of a statement by the abolitionist, Sarah Grimké:

I ask no favor for my sex; all I ask of our brethren is that they take their feet from off our necks.

This November, get out there and vote. Know how to vote in your state. Vote early. Vote by mail. Complete your ballot carefully and put it in your city's drop box. Be prepared for long lines if you vote in person. Vote as if your healthcare is in peril. Vote as if your or your partner's reproductive rights are at risk. Vote as if corporations have more rights than you do. Vote as if your right to vote is in jeopardy. It's all hanging in the balance.

Now is not the time to pull any punches.

the terror of decent people

The wind through the trees speaks to me, each leaf part of a collective voice, each a palm, each a map of sorts to a larger world. These living beings know what to do, know what freedom means. Seeds travel on breezes and in the mouths and bellies of birds. Trees put roots down in fertile soil. Geese and butterflies migrate legions of miles. Seas intermingle. Grasses cross natural, manufactured and imagined divides. Rivers breach levies. Clouds rain down quenching all creatures. Nature knows no boundaries. Why should we?

After Calvin's unexpected grand mal at dinner time Saturday night, after we wiped a stream of blood running down out of his mouth, I sat on a stool next to his bed and watched him breathe. I pondering the state of the nation we're in, where blood is shed in massacres which are happening with increasing frequency. Studying my boy's maturing face, I recalled what Frank Borman, Apollo 8 astronaut, said when feasting his eyes on blue Mother Earth from space:

When you're finally up at the moon looking back on earth, all those differences and nationalistic traits are pretty well going to blend, and you're going to get a concept that maybe this really is one world and why the hell can't we learn to live together like decent people.

—Frank Borman, Apollo 8, December 1968

And then, while bitterly lamenting racist despots and White supremacists and the atrocities they commit, I reflected on what the seventeenth-century Dutch physicist, mathematician and astronomer said:

How vast those Orbs must be, and how inconsiderable this Earth, the Theatre upon which all our mighty Designs, all our Navigations, and all our Wars are transacted, is when compared to them. A very fit consideration, and matter of Reflection, for those Kings and Princes who sacrifice the Lives of so many People, only to flatter their Ambition in being Masters of some pitiful corner of this small Spot.

—Christiaan Huygens, The Immense Distance Between the Sun and the Planets, 1698

And yet, on this small spot of glorious planet we share with nature and the rest of humanity, we have an epidemic of Right Wing, White Supremacist terrorism. It's motivated by the erroneous, bigoted and dangerous notion that ours is a White, Christian nation, and inspired by a reckless president bent on maligning People of Color meant  to rile up his base, pitching one struggling human against another while he tweets indignities from his gilded toilet seat.

I think of how these hateful people speak of and treat others who are their mirror image, save what's in their hearts and the pigment in their skin. I hear and read deplorable rhetoric about refugees spewing from fanatical mouths, words like "alien," "animal," "thug," "infestation"—no way to describe decent, loving, striving human beings. Where has our collective humanity gone? It is being poisoned by a fearmonging "leader," a tyrant, liar and thief who preys upon the ignorance and anxiety of people who feel they need someone else to blame.

How foolish to believe that anyone on this hunk of land, one which was stolen from its natives in a heinous genocide, can somehow feel entitled to decide who has the right to call it home.

Yesterday, I watched a video of a Black American with long dreadlocks being harassed by a White police officer in the front yard of his own home. It was a case of mistaken identity. Watching and listening, I heard the anger in the man's voice and the fear in his wife's. History has proven that any false move by the Black man could've resulted in the cop gunning him down. I've seen so many of these kinds of videos I've lost count—White cops shooting decent Black people. White cops and civilians harassing Black men in cars. Black men on sidewalks. Black men picking up garbage outside of their apartment building. Black boys playing in parks. Black men, women and children going to church, having a bbq, entering their own homes, walking across their college campus, sleeping in their dorm’s common room, waiting for a subway, mowing their lawn, entering their apartment building, going home from a pool party, driving to work, crossing a street, waiting for a friend in a Starbuck’s, shopping at Walmart, walking home.

And if you haven't read or seen James Baldwin's, If Beale Street Could Talk, you should; in its words and scenes, you will feel the terror of decent Back people.

These White Nationalist racists have launched an assault on the rest of America, on decent people's freedom to move and to safely exist in our personal and public spaces. They are driven by the fear of being replaced by people who've born the brunt of centuries of White state-sanctioned slavery, family separation, rape, forced labor, harassment, racial profiling, police violence, arrest, incarceration, exploitation, discrimination, marginalization, segregation, disenfranchisement, and demonization.

But as sure as the trees speak to me through the whisper of wind, as sure as the tides flow and recede, the world is evolving, its natural and imagined borders forever changing. Its people put down roots where the ground is most forgiving. We cross divides in search of liberty. We intermingle like the seas. We suffer and triumph and love and bleed the same. Each of us is a leaf on the same tree. We have room enough to shelter one another, and to let each other breathe.

Carolyn Cole / Los Angeles Times

choices

Recently, while listening to a podcast about abortion, a sickening thought popped into my head: what if my obstetrician concealed the fact that my fetus, who became Calvin, was missing some—perhaps most—of the white matter in his brain?

Michael and I didn't learn of the grave anomaly until a follow-up sonogram when I was thirty-two weeks along. I remember a Boston specialist's surprise that the malformation hadn't presented in one of my earlier sonograms from Maine. It was her opinion it should have. Thinking back, I wonder if it had without us knowing.

With news on abortion trending, I relive the events of my two pregnancies. I revisit the initial weeks of my first one, and the dreaded feeling at seven weeks that I wasn't pregnant anymore. I remember the sonogram revealing there was no fetal heartbeat—confirming my suspicion—and the gut-wrenching decision to wait for my body to expel the miscarried fetus or to undergo dilation and curettage. I then recall my OBGYN moving her practice out of town and, when I got pregnant again, asking friends to recommend a new one. I relive the first few visits to see the new doctor, my request for a CVS test to check for genetic abnormalities early on, her resistance to assent, followed by her comment that if we found something terribly wrong with the fetus we would be "hard-pressed" to find a local doctor to provide an abortion, asserting her refusal to perform the procedure herself.

She offered no further discussion on the topic, no counseling, no support, no understanding, no offer to refer if needed. In my and Michael's minds, she was negligent and indifferent. In the end, a sonogram proved my pregnancy was in its thirteenth week, too far along to undergo the test.

In revisiting these moments from over fifteen years ago, I wonder if my obstetrician secretly knew early on—though concealed it because of her religious beliefs—that Calvin was missing as much as 80% of the white matter in his brain, a percentage that one pediatric neurologist cited after having studied my fetal MRI and sonograms. He later told us our child might never crawl, walk or talk. He never mentioned severe visual impairments or uncontrolled seizures as possibilities.

If Michael and I had known early on of Calvin's malformed brain, and had we known the dreadful extent to which it might impact his well-being and quality of life, his development, cognition, coordination, communication, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused by caregivers, would we have chosen to terminate my pregnancy? I really can't say. But one thing I do know with certainty: it is torturous to see Calvin suffer on a daily basis, to see him seize repeatedly, sometimes for several consecutive days, bite his cheek so bad it bleeds, see terror in his eyes and malaise on his face, be a veritable guinea pig for neurologists and me, endure the miseries of antiepileptic drugs and their heinous side effects, to see him hurt so needlessly.

Especially during rough stints, it's hard not to imagine how life might have been—perhaps easier, calmer, happier, less restricted, less anxious, less heartbreaking—if Calvin had never come into this world. I find myself resentful of still having to spoon-feed him and change his diaper after fifteen years. I get frustrated by the fact he can't do the simplest of things. I'm chronically sleep deprived from his frequent awakenings. One moment I lament his existence and the next I wonder what I would do without him. And though Calvin brings me immense joy at times, and though he is as precious to me as any mother's child could be, our lives have been profoundly strained by his existence. All three of us suffer, but none more than our sweet Calvin. Life with him, worrying about and watching him endure his maladies—despite, or perhaps owing to, the fact I love him immeasurably—is such a painful and burdensome endeavor that at times I regret ever deciding to have a child.

Yesterday, I read a post on social media accompanied by a photograph of a young woman in a long dark dress cupping her pregnant belly, head bowed. The post read:

I’ll be honest. This week’s news cycle has been exhausting and painful. 

This picture is me, taken the night before I terminated my pregnancy. My head is bowed and my hair covers my face, so what you don’t see is the grief, my face and eyes swollen from days of no sleep and constant weeping. After days of research and google and doctors visits and soul wrenching conversations with my husband about whether we would bring our son into this world knowing he would not survive. 

Women are not waiting until the third trimester and saying “oops, I changed my mind.” They have little outfits in drawers, maybe even have the nursery set up, they have picked out names. And then they’re having their hearts broken after discovering their baby will not come home. Please be kind. Please read our stories. Please research before you post.

None of these situations nor the feelings they induce are easy. There's no black and white, cut and dried logic to apply when pregnant women are faced with these dour choices. Panels of men in suits and ties meeting behind closed doors should not be deciding pregnant women's fate. Sometimes the most intimate and hopeful situations sour. That is when understanding and empathy come in, not hyperbolic, false propaganda and political posturing by men in positions of power who'll never be pregnant. We need to listen to women's stories and trust them to make the best well-informed choices they can when their lives turn upside down.

To imagine again that someone—a stranger to me—could have decided my fate and the fate of my family in such an intimate and tragic matter is chilling, dystopian, really. With the future of Roe vs. Wade now in jeopardy, and access to safe, legal abortion becoming harder in many states due to anti-choice efforts, our mothers, daughters, sisters, wives and partners are facing similar peril, when what they need most is love, understanding, support, and the ability to make their own choices.

letting go

After reading my most recent post, a little less stress, about giving up on logging Calvin's behaviors, etc., in a daily journal, a friend my age, who some years ago lost his daughter to opioid addiction, shared his thoughts about what I had written. He said: 

Letting go. Acceptance. It comes last, and in endless layers, one thin peel at a time. I know. Believe me: I know some version of this.

We hold on to magical thinking, and only in release ... slowly, sequentially, only as we are able, feather by feather ... is there relief.

I think I know ... I can't say I for sure know, but I think I know ... I think I understand this sort of surrender of which you speak, and the modicum of peace that follows.

Time and readiness. Patience and prayer. For all of us.

His gorgeous words were particularly moving to me. I hadn't considered my decision to give up the daily task of logging in a journal as a kind of acceptance of Calvin and his stubborn condition of intractable epilepsy. I thought of it more as a way to reduce my level of stress. However, in my first day of not logging, I felt more present in my son's life, not feeling compelled, whenever I saw what I thought might be a seizure harbinger, to run to my journal to jot it down. The result was something I hadn't fully expected, which was a kind of admission and acceptance that I didn't have full control over my son's epilepsy, and that journaling—though it once served a purpose—might no longer be necessary or helpful, and that Calvin will be okay even if he seizes. Rather than logging every suspicious behavior, I've just noted them in my head, sat with each for a bit, then continued to engage with my child—embracing, kissing, tickling. It was a relief not to be hyper-focused on documenting. I was focused instead on my son without suffering some of the angst I usually feel. Putting the journal away, to a great extent, has allowed me to let go.

With new insight, I reread what my friend wrote. Certain words stood out. Acceptance. Endless. Thin peel. Relief. Surrender. Peace. I felt all of these things the first day I gave up logging Calvin's woeful and suspicious behaviors. In giving up that routine, I also give up emphasizing in my mind and on paper the negative aspects of Calvin's days, therefore depriving them of a certain agency. So, too, do I relinquish a certain amount of cynicism leaving more space for hope, optimism and healthiness. Maybe Calvin will feel this effect, too. Perhaps he'll seize less. We run in such close circles, inches or feet away from each other at all times, I can only imagine he'll benefit.

Photo by Michael Kolster

a little less stress

Something came to me the other night in a kind of epiphany. While cozying up to Michael in bed, I was thinking about my dentist's suggestion of wearing a night guard to protect my teeth from clenching them. Assuming my teeth clenching is due to stress, it occurred to me in a flash that perhaps giving up keeping a daily journal would lessen that stress. I've kept a journal since Calvin was diagnosed with epilepsy in 2006. In it I log his behaviors, star the ones which seem to be harbingers of an impending seizure, underling or capitalizing the most vexing ones. In the outer margins I log his bowel movements, indicating their size and consistency. I circle any suppositories or pain medications I give him. I highlight medicine changes in yellow, night terrors/pain episodes in pink, grand mals in orange and partial complex seizures in blue. I note how many times I am up at night laying him back down and covering him, and draw a cloud around nights when he stays up past bedtime perseverating. Rarely do I write positive things, perhaps because of their infrequency or perhaps, in my eternal quest to fix my kid, my focus is misdirected.

I think the epiphany came as the result of something Calvin's new nurse, Sue, said to me the other day. In relating her own history of hypervigilance over a now-grown son who had intractable epilepsy as a kid, she told me he had once said, "Mom, stop looking at me." At the time he was just six.

In her anecdote, I saw myself and the way I physically and mentally hover (obsess?) over Calvin and his condition. Perhaps, if he could speak, he'd tell me to stop looking at him. It got me thinking that maybe the journal—though it has served a purpose in tracking possible relationships between Calvin's seizures and his meds—might at this point be overkill. After all, I think I've got a pretty good sense of patterns in his condition, and I'm not sure writing down omens prepares me any better for his seizures. And if need be, I can also rely on my monthly calendar where I log the important stuff like seizures and medicine changes.

Years ago, I stopped using a handmade chart to check off Calvin's daily medicines. At one time, using it was necessary considering the slew of medicines and supplements he used to get—as many as twenty-three administrations a day—and sometimes I'd forget if I'd given them. Now, Calvin takes so few medicines—Synthroid, Keppra, multivitamins, Miralax, THCA and CBD cannabis oils—that I can remember them without the use of a chart. Years ago, I also stopped listening to the baby monitor when I slept because I'd wake up at the slightest move Calvin made in his bed. Both decisions reduced my overall stress, if only a little.

So, yesterday, the journal went into a drawer. Starting today, I won't be logging anything in it. Though I'll allow myself the right to use it again, I want to see what life is like without it. Perhaps I'll stop clenching my teeth at night. Maybe I'll sleep better. Perhaps Calvin will feel less stress. Maybe in turn he'll seize less. Maybe its absence will open up scads more time for me to do other things instead. Who knows? The possibilities are endless.

in the sparkling stars

When thirty-five degrees feels balmy, it's a sign one might live in the northern hinterlands, where at five o'clock a long-set sun lights up a mackerel horizon.

On our way to the fields, Nellie and I stop by Woody's just to see if he's all right. I ring the bell and through the window see his cat Norton scamper by. Once inside, I give Woody a hug and on its heels my usual grilling: What's for dinner? Any news to report? Are you out of dessert? Does your rib still hurt? A few weeks ago Woody, who turned eighty-six last July, stood up too fast, became dizzy, fell into a desk and fractured a rib. He's doing okay now. I thank the stars for Woody.

After a short visit, Nellie and I continue to the fields where most of the snow has melted. Off leash, she races around nose to the ground, smelling scraps of student-athletes' food now thawed and rotting in the spongy sod. There's a hint of pine in the air, plus wafts of smoke from neighbors' chimneys settling over us like fog. Strings of colored lights have begun popping up on neighbors' trees and shrubs. I stand in the center of the field looking up. Above us, only a smattering of stars peek out between sparse clouds. As they twinkle, I think of Lily and Ronan and Cyndimae and Gordon and Arnd and so many others who have left this world far too young. Now, I see them in the sparkling stars. On our saunter home, I glimpse another octogenarian friend, Nan, through a gap in the fence around her house. Her face is aglow from what I think is a laptop, and I wonder if she feels lonely without her husband Bob there to take care of; he now lives in a nursing home. I miss greeting him in his driveway on nights like this, smelling his sweet pipe smoke as I approached. He'd always say, "Nan doesn't let me smoke inside anymore," then he'd chuckle as he took a puff.

Almost home, a crescent moon appears tangled in the canopy of a scraggly oak. I'm thankful the moon isn't full, since those seem to trigger seizures in my son. The thought of seizures brings to mind Jakelin Caal Maqin, the seven-year-old Guatemalan refugee who recently died in US custody. She had suffered seizures before she passed, having made the arduous journey with her father to our so-called Promised Land. I wonder if these refugees who walk at night navigate by stars. I wonder what led to her demise. I read of border patrol agents sabotaging humanitarian water stashes left in the desert to aid desperate, parched refugees. What kind of people do such things to fellow human beings? Cowards. Monsters. Fools.

I call Michael from my new dumb phone to tell him that I love him. I hear Calvin squealing in his arms. It's almost bedtime for our boy. Soon, we'll change his diaper and put him in flannel pajama pants and two clean long-sleeve shirts. We'll give him Keppra, cannabis oil and water. We'll brush his teeth, lift him into bed, tuck him in under a goose down cover and thick fleece throw. We'll stroke his hair and kiss him. He'll be warm and safe, dry and hydrated. No hiding under desert sagebrush in the wilds. No risk of thirst and hunger. No sleeping on concrete floors in cages. No sitting in filth with scores of others. No abuse, neglect or trickery from foreign strangers speaking English.

Where has our compassion as a nation gone? Our embrace of others? No doubt to dirty dogs.

As I step into the house, warm light and air pour over me. Once more I glimpse the sky before I close the door. I see Jakelin there among the sparkling stars.

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.

glimpses

Before he came into the world, I used to have glimpses of myself with him as a baby at the beach, the two of us plopped on a blue and yellow sunflower blanket, his blond curls caught by the wind. Imagining him older, I'd see us walking silently through a pine forest, looking up through the trees, watching for woodpeckers, hearing the creak and squawk of rubbing branches in the canopy. At some point I thought perhaps we'd fly with him to New York, to France, to Italy.

Now I walk alone with my dog Nellie across a vast field, tears trickling down my cheeks. I call her and she runs to me. Half-heartedly, I play hide-and-seek. She understands and can do so much more than her human brother. I get glimpses, but mostly I feel so little semblance of what I think parenthood must be. My fitful grief gets all balled-up with loss of hope, expectation, ambition, dreams.

It was hard enough knowing much of his brain's white matter was missing. Worry. Then my planned cesarean turned into an emergency. Fear. Then he needed help breathing and eating. Anxiety. Then he failed to thrive and barely develop. Guilt. Then we learned he could hardly see. Despair. It took him years to crawl and walk, and he has spoken just a single word—Mama—once. Misery.

Then he started to seize.

We keep him alive. Keep him fed, keep him warm, dry and clean. Try to control his seizures. Like any parent, we love him immeasurably, but beyond occasional smiles and giggles, there are very few glimpses of normalcy or happiness in our infant-toddler-teen.

In my lowest moments I think of good, productive and exciting lives wasted on years of soiled bibs, dirty diapers, sopping garments, sleepless nights, hopeless futures, monotony. Had our son been born healthy, I consider the freedom we'd be moving into with a child old enough to be alone. I juxtapose that glimpse of liberty with a heavy one of wondering how long my body and spirit can withstand the burden—my child's weight, his restlessness, his seizures, his behaviors, his need. I glimpse that burden in the mirror. I feel his trouble settling inside of me.

vigil strange I kept on the field one night

This year, when I returned to Walt Whitman's poem about burying his son on the battlefield, I tried to understand the cause his boy, and hundreds of thousands like him, made the ultimate sacrifice for: our freedom as Americans. Then I imagined those who have battled in vain for freedoms which never really came their way: people who, along with their families, have never been fully unshackled from centuries-long oppressions, many of which they still face every day in this nation, Americans who are marginalized by the ones in power who make policy, pass laws and enforce them.

I considered, perhaps more deeply, Americans taking a knee during an anthem which ostensibly symbolizes the land of the free. Their voices are stifled and condemned by so-called patriots for asking to be treated fairly, respectfully, humanely. Why do we send our sons and daughters to war if we do not all share in the same freedoms at home? How can one American feel righteous in denying another his or her voice, particularly when unarmed, often innocent folks are getting gunned down by cops in the streets? Their parents and loved ones have to bury and grieve the loss of their children not unlike Walt Whitman did.

This Memorial Day, my hope is that more Americans will finally see said inequity and have the courage to stand up—or kneel—for their brethren, thus honoring those who have died fighting for our most basic and precious freedom.

Vigil strange I kept on the field one night;
When you my son and my comrade dropt at my side that day,
One look I but gave which your dear eyes return'd with a look I shall never forget,
One touch of your hand to mine O boy, reach'd up as you lay on the ground,
Then onward I sped in the battle, the even-contested battle,
Till late in the night reliev'd to the place at last again I made my way,
Found you in death so cold dear comrade, found your body son of responding kisses,
(never again on earth responding,)
Bared your face in the starlight, curious the scene, cool blew the moderate night-wind,
Long there and then in vigil I stood, dimly around me the battle-field spreading,
Vigil wondrous and vigil sweet there in the fragrant silent night,
But not a tear fell, not even a long-drawn sigh, long, long I gazed,
Then on the earth partially reclining sat by your side leaning my chin in my hands,
Passing sweet hours, immortal and mystic hours with you dearest comrade—not a tear,
not a word,
Vigil of silence, love and death, vigil for you my son and my soldier,
As onward silently stars aloft, eastward new ones upward stole,
Vigil final for you brave boy, (I could not save you, swift was your death,
I faithfully loved you and cared for you living, I think we shall surely meet again,)
Till at latest lingering of the night, indeed just as the dawn appear'd,
My comrade I wrapt in his blanket, envelop'd well his form,
Folded the blanket well, tucking it carefully over head and carefully under feet,
And there and then and bathed by the rising sun, my son in his grave, in his rude-dug
grave I deposited,
Ending my vigil strange with that, vigil of night and battle-field dim,
Vigil for boy of responding kisses, (never again on earth responding,)
Vigil for comrade swiftly slain, vigil I never forget, how as day brighten'd,
I rose from the chill ground and folded my soldier well in his blanket,
And buried him where he fell. 

—Walt Whitman

Confederate dead, Chancellorsville