6.24.2022

choices

Awhile ago, 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 today's news about the Supreme Court reversing Roe vs. Wade, 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 fetal tissue 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 agree, 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 eighteen 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 the possibility of blindness 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, happiness, vision, ability to move about and function independently, and his increased odds of having unstoppable seizures, or of being abused and neglected 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 the terror in his eyes and malaise on his face, be a veritable guinea pig enduring 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 eighteen years. I get frustrated by the fact he can't do the simplest of things. I'm chronically sleep deprived from his frequent awakenings and seizures. 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.

Years ago, 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 mostly men in suits and ties and robes meeting behind closed doors should not be deciding pregnant women's fate. Sometimes the most intimate and hopeful situations sour. That is when understanding nuance and empathy are required, not hyperbolic, false propaganda, and disingenuous political posturing by men in positions of power who'll never be pregnant, nor their female counterparts who shove their religious, dogmatic agendas down others' throats. 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 by an unplanned pregnancy or one that took a turn for the worse.

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 access to safe, legal abortion having just become harder in some states and impossible now in others, our mothers, daughters, sisters, wives and partners, especially the poor and people of color, are facing similar peril—forced pregnancy no matter the circumstance, unsafe, back alley abortions, suspicion and punishment in cases of miscarriage—when what they need most is love, understanding, support, and the ability to make their own choices for themselves.


6.10.2022

graduation day

Calvin would be graduating from high school today with so many of his proud, talented, smiling peers if things hadn't gone so terribly wrong from the start. For reasons we will probably never know, life with Calvin didn't turn out like we had hoped. What I thought of as the promises of parenthood did not deliver. 

While in the garden today, throwing mulch down, pruning, mowing the lawn—controlling that over which I have some semblance of control—I thought about all the ways in which the three of us have been cheated. You've probably heard it all before. We have been deprived of: seeing our child in school concerts and plays; cheering him on at athletic events while making friends with the parents of other athletes; joining family potlucks and picnics and pizza parties and movie nights; seeing our boy bring a sweetheart to prom. These are but a smattering of what we have had to forego because of Calvin's conditions, and thinking of them makes me sad second-guessing our decision not to have another child, albeit a healthy one, so we could cash in on some of parenthood's most precious experiences.

Michael and I have missed the chance for dinner conversation with our child, the chance to hang out with him at the beach, the mountains, the swimming hole, the movies, at restaurants and other venues. We have missed sharing our love of camping with him and have had to give up on that venture all together. We have missed the chance to leave him home alone so we can walk the dog or go for an impromptu anything together as a couple. We have been cheated out of seeing our boy excel in whatever he might have enjoyed, and perhaps gracefully endure defeat and failure. We have been robbed of watching him become a man. We've been cheated out of seeing him travel, study, have friends, fall in love. We'll never know the joy of having grandchildren.

While rereading this, I feel like a major whiner. So many people have it so much worse than we do, deprived of their basic freedoms, of food, shelter, water and modern conveniences, of seeing their loved ones. From where I'm sitting outside, I gaze out over a glorious garden of my making, the early-evening sun shimmering through the maples while I hear Calvin upstairs, with Michael, patting on the windowsill of our bedroom. The bell of the college chapel strikes half past four. A soft, warm wind blows a couple of wind chimes. I'm so goddamn lucky, I think to myself.

And so when I see the families of graduates tonight—some of them my friends' sons and daughters—stepping out of their cars parked in front of our house, I'll be both happy and excited, living vicariously through them as I do of other's travels. I'll also be silently heartbroken, and may shed a tear when I look into my husband's eyes tonight over a glass of wine and a lamb burger. But I'll also be full of gratitude looking out over a garden which I have shaped and sheared into a sanctuary I can appreciate as much for its beauty as for all the promises it reliably brings to me each year. Most of all, I'be be grateful for a son who, though he's not destined for college or travel or rocket science or journalism or art or marriage, still gives me what I wager every parent wants most from their child.

6.06.2022

senioritis

Spring is in the air. Lilacs and azaleas are in bloom. Lupine is blanketing the hillsides. Showy large-leaf rhododendrons are budding into trusses of red, pink and purple. Students are donning chambray shirts, khaki shorts, flip-flops, capris and flouncy dresses. High school seniors have wicked cases of senioritis, their minds on summer and beyond, eagerly awaiting the last day of school before graduation. I remember the feeling.

I'm suffering the effects of my own version of senioritis. This is the time of year when I hear and watch the students breeze past our home on foot, bikes, roller skates, cars, skateboards. I see photos of them on social media dressed to the nines on the way to prom with their sweethearts. I wait for the day, with both excitement and trepidation, when our street becomes choked with cars, and out of their doors step throngs of seniors who then stroll past with their families on their way to commencement at a nearby venue.

When I was pregnant with Calvin, Michael and I fully expected he would graduate from high school this year along with two of our friends' sons, the three of whom were due to be born within a week or so of each other. Alas, Calvin arrived six weeks early, and his brain malformation drastically changed his trajectory and our expectations of him and what parenthood might offer.

Some very dear West Coast friends have a son just three months older than Calvin. Recently, they sent us their boy's graduation announcement and his handsome senior photo. In a separate envelope, his mother included a thoughtful, handwritten letter. In it she wrote:

We love you guys and hope it is ok to share this moment with you via Luc's announcement. Our boys have circled the same number of suns but their journeys have been unfairly different. Even so, we celebrate Calvin too, and all he and you both have accomplished in the face of constant, deep and shifting challenges. He would not have come this far but for your loving strength. And all the beauty you have created in writing and photography and gardening and friendships and teaching and cooking while raising Calvin—well, Miss Rumphius would approve.

My eyes stung and watered, and I wondered who Miss Rumphius was; though her name sounded familiar, I couldn't place her. Nevertheless, it was one of the kindest most sensitive gestures we've gotten regarding Calvin, right up there with the handmade, hand-delivered birthday cards our friends' son, Felix—who was born when Calvin was meant to be born—has given Calvin every year without fail since Felix was old enough to write and draw. 

The morning after we received the graduation announcement and letter—before Calvin gave me Covid—I ran a 5K out at Pennellville. Before the halfway mark, I came upon a beautiful swath of lupine sprinkled with buttercups growing thickly aside a drainage ditch. I paused my workout to photograph it. When I got home I showed Michael the photo, and he reminded me who Miss Rumphius was. In the children's book named for her, Miss Rumphius—who was inspired by the real-life "Lupine Lady," Hilda Hamlin—spread lupine seed along the Maine coast in an effort to make the world more beautiful.

Recounting my friend's kind sentiments, plus the serendipitous discovery of the lupine and her suggestion that I and my husband, despite the travails we've endured with Calvin—or perhaps because of them—have made the world more beautiful, deeply touched me. I realized that a high school diploma is but one accomplishment in a world full of challenge and opportunity. I realized that Calvin has endured more adversity in his eighteen years than perhaps most people will in a lifetime. I realized that I am immeasurably proud of him for the obstacles he has surmounted and for the person he is. Calvin is, with no doubt, the best person I know because of his purity, affection, unconditional love and acceptance of everyone, no matter who they are. Those accomplishments and qualities are things worth celebrating, and being reminded of them by a thoughtful letter from a dear friend does a lot to assuage my case of senioritis. 

Calvin's preschool graduation photo

6.01.2022

on guns and gutlessness

Because of someone's negligence, my child fell at school and broke his hip. It caused him excruciating pain. He had to have surgery. His supple thigh was cut open. His muscles splayed. The pieces of his broken femur were set in place, drilled and fixed with screws. He was stitched up and bandaged. My son spent five weeks mostly in bed recovering. His fall could and should have been prevented. Even so, I'm grateful that my child is healing and smiling and walking again. More to the point, my child is alive and kicking unlike the victims of countless mass shootings. I grieve for them.

What the hell is wrong with this nation? This place of so-called rugged individualists ("so-called" because exactly no one achieves anything by themselves) who think their right to own and brandish (or conceal) guns—even high-capacity assault weapons—eclipses the rights of others to keep themselves and their children safe from harm in public spaces and in homes. What the hell is wrong with these so-called leaders ("so-called" because they don't lead if it risks crossing the NRA)? Instead, in the shadow of these tragedies they deflect and deny any notion that guns are a main source of the problem. What is it about the Second Amendment's words, "A well-regulated militia" that these cowardly, power-hungry fetishists don't understand? Originalists be damned for your hypocrisy. Where did some Americans' selfishly reckless "me, me, me" and "eff your feelings" attitudes come from? Ignorance? Hate? Narcissism? Entitlement? Fear of becoming obsolete? All of the above? There have been so many lives lost to Covid and guns, but it didn't—doesn't—have to be this way. The spurning of common sense gun safety legislation is outrageous. Unforgivable, really. Lives could have been and can be saved.

When I consider the grieving parents of the murdered children, I think of Walt Whitman's, Vigil Strange I Kept On the Field One Night, in which he writes about a father's vigil for his fallen soldier son who, as he describes, was "a boy of responding kisses, (never again on earth responding.)" I read that one little girl at Robb Elementary School was brave and resourceful enough to smear herself with her dead friend's blood so she'd appear dead to the shooter. Compare her courageous actions to conservative legislators who, despite these grisly scenes which have become so frequent, are paralyzed by their gutlessness and greed.

I mourn for the families and friends of children and adults gunned down in schools, theaters, concert venues, grocers, places of worship. It's painfully clear that thoughts and prayers do nothing to stop the carnage. Neither, it seems, do the 393 million guns Americans hoard with the false notion they are somehow safer owning one (or more) despite the studies showing that owning guns increases risk of harm or death. And, there is no merciful god to step in and stop the bloodshed. There's only nature, including human nature, which fails so miserably when fear, hate, greed and lust for power displace peace, love, understanding and brotherhood. It's sickening to watch legislators sit idly by and, in their flabby inaction, seem content to continue watching massacres happen. "Guns don't kill people," they exclaim. I'd like to hear them explain why guns are prohibited at the annual meeting of the NRA—evidence of their hypocrisy and deceit; they know it'd be dangerous. They have the blood of innocent children on their hands, a stain they can never wash away.

And so, at times like these, when mothers and fathers are grieving the senseless murder of their children, I think of my boy who is often out of sorts. My boy who regularly feels miserable. My boy who, like today, still seizes and in the wake of the attacks struggles to breathe. I've seen him look, too often, glassy-eyed and ashen as if the life had been snuffed out of him. But today he is here beside me, and for that I am most grateful; he is still a boy of responding kisses.

For the sake of our children, I hope folks do away with their guns and gutlessness, their unfounded, erroneous, harmful notions.

In the wake of this morning's seizure

5.16.2022

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.

5.09.2022

struggles

It has been four weeks since we took Calvin to the emergency room, and three weeks since he had surgery to install three stainless steel screws into his femur which had been broken during a fall at school. He has spent the better part of every day since in bed recovering. It's a good thing my husband is gainfully employed so I can stay home all day taking care of our son. A little over a week ago, with help from me to hold his hands on a walker, Calvin began taking a few baby steps each day from his bedroom to ours. It's a bit of a struggle; he can't go far—just partway across the carpeted room. Sometimes his little legs quiver. Is he in pain? Are his muscles fatigued? Both? Since he can't tell me, I can't be sure, and that just about kills me.

When I think about how long it took Calvin to get to the point where he could walk safely and somewhat independently (was it ten, twelve, fourteen years?) without a safety harness or a hand to hold, I could cry. He and I have worked so goddamn hard to get where he got before the fall, and it's painful to think it was lost—at least temporarily—in a matter of seconds.

Last Friday, we brought Calvin back to see the orthopedic surgeon. They took more x-rays and the surgeon removed the dressing protecting Calvin's incision. The surgeon said Calvin's hip—the incision, femoral head, femur and three stainless steel cannulated screws—looked "good." We went home and gave Calvin his first bath and shampoo in twenty-four days.

Thankfully, it seems our boy is on the mend, though he is still walking very tentatively and not for any significant distance, and he can't do stairs for another two weeks, which means I have to scooch downstairs with him on our bums and carry his ninety-two pounds upstairs. What I worry about as much as anything is that Calvin will suffer the kind of hidden and chronic pain—like headaches or arthritis—that isn't bad enough to cause him to limp or bring him to tears, but exists nonetheless. We can never know, for instance, if those steel screws will at some point cause him bone pain or if they'll irritate the surrounding tissue. It's miserable knowing my baby can't tell us when he's hurting, can't get relief for what ails him. It's the trouble with mothering him, which—though I've struggled at times in my life—may be the hardest thing I've ever done.

5.02.2022

leaves of grass

This is what you shall do; Love the earth and sun and the animals, despise riches, give alms to every one that asks, stand up for the stupid and crazy, devote your income and labor to others, hate tyrants, argue not concerning God, have patience and indulgence toward the people, take off your hat to nothing known or unknown or to any man or number of men, go freely with powerful uneducated persons and with the young and with the mothers of families, read these leaves in the open air every season of every year of your life, re-examine all you have been told at school or church or in any book, dismiss whatever insults your own soul, and your very flesh shall be a great poem and have the richest fluency not only in its words but in the silent lines of its lips and face and between the lashes of your eyes and in every motion and joint of your body.

—Walt Whitman, from the preface of Leaves of Grass

4.27.2022

hard to cry

there's no sun due till sunday. for two weeks, i've been mostly holed-up inside. i feel the need to have a good cry. but somehow it's stubborn. hard to get out, though impossible to swallow. considering the state of things—putin's loathsome war against ukraine; musk's strong-arming of twitter; lying, scheming "patriots" in congress; a friend's premature death; grieving mothers, fathers, wives and children; calvin's broken femur and recent surgery—it shouldn't be hard to cry. tears should flow unrelentingly. but they're stuck somewhere in my thickening throat. i can feel them trying to push past my clenched teeth when i drift between sleep and dream, or suffer insomnia. sometimes a song will tug them along, nearly into existence—the soundtrack from melancholia; nick drake's river man; adagio for four strings. i so want the tears to spill. to let go from their headwaters, each holding a different emotion in its salty, quivering drop.

perhaps they're caught up in a knot of anger and resentment, despite the work i do to limit and loosen those emotions. to leave them behind. but i know those feelings are present and are maybe festering. sometimes I need to scream just to release them. i don't want them to breed or eat me from the inside out.

calvin had surgery last week on his broken femur—one of my worst nightmares—to reattach his femoral head to its bone using three cannulated screws. it was a somewhat long operation. he doesn't yet want to put weight on that leg. it dangles from its socket as if a pipe on a wind chime, hovering above ground like it did when it was broken two weeks ago at school. i hope the surgeon got it right and that calvin will be walking on it soon. today is his fifteenth day spent in bed playing with his baby toys, listening to music, eating his meals, cuddling with michael and me. i worry he won't again be able to walk independently. the notion is scary. angst and bitterness pool. i wish i could shed some tears, but for now they remain steadfast in their reservoir.

i sit here on calvin's changing table listening to music. steely dan's do it again comes on, and i hear the lyrics:

then you love a little wild one and she brings you only sorrow.

the words make me think of me and calvin, and i just about break down.

but then i hear an unmistakable noise in calvin's bed, and i know he's had a huge gooey poop, and i spend the next half hour wiping it up—off his skin, off his pajamas, off his socks, off my sweatshirt cuff, while trying to ensure he doesn't put his hands in it and so it doesn't get on anything else. and i could almost cry from sheer exhaustion. but i don't. the anger, angst, and discontent have their grip on me and are holding my tears hostage, at least—i think—until i can begin to see my boy take a few steps. until i have a sense this clusterfuck (excuse my french) may one day be over.

when michael comes home, i duck outside to walk the dog. the sky is gray. the ground is wet. i feel fatigued in a way i haven't often felt. i drag the heels of my green rubber boots along the gritty sidewalk as if i'm very, very old.

suddenly, the sky opens up. the clouds begin to sprinkle. drops fall on my cheeks, and something in me releases—the floodgates—and i cry a good cry, a long cry. and i walk along the street not caring if anyone sees my miserable, knitted face, because—besides a good night's sleep—crying is just what i need.

4.22.2022

road to recovery

On Wednesday morning, my son was wheeled into the operating room of our local hospital. Michael donned a bunny suit, cap and booties to accompany him until the anesthesiologist put Calvin under. Standing in the hospital room alone, looking out into the woods—a very similar view to the one we had when Calvin and I boarded in the labor and delivery ward for several weeks after Calvin was born—I felt a bit incredulous. Incredulous that my sweet little unassuming son was being drugged up, cut open, muscle splayed apart, femur drilled and fit with three stainless steel screws, all because of a regrettable accident at school the previous week. I was living one of my worst nightmares as the parent of a child who, despite his inner and outer loveliness, has already been the source of so much angst and grief.

The surgery lasted far longer than we expected, and therefore was a bit of a nail-biter. Michael and I sat in silence, my mind racing to all kinds of places that no parent wants their thoughts to go. But the good news is that the surgery seemed to go well, and it was lengthy because the surgeon had, in his own words, obsessed about the placement of screws in Calvin's wonky anatomy. He told us that Calvin could put weight on his leg whenever he's up to it! We were astonished, having been told earlier that Calvin would likely be confined to his bed and wheelchair for up to six weeks. More good news came later that day when we realized we didn't have to spend the night in the hospital, a place we don't relish for a number of reasons that could fill a blog post or more on their own.

To add insult to injury, that night Calvin had a seizure, which we had seen coming while in the hospital. Like all of his seizure of recent years, it stopped on its own, and we were able to thwart a second one by giving him extra THCA cannabis oil. We managed his hip pain with alternating doses of ibuprofen and acetaminophen and with half a tablet of oxycodone when it seemed, by Calvin's moaning, that the others weren't sufficiently doing the job. Obviously, none of us got much sleep, but we rested better than if we'd been in the hospital.

Through all of the trauma since Calvin's fall ten days ago (seems like eons), many dears have shown their love, concern and support. We had dog walkers for Smellie, and received all kinds of goodies—cards, bottles of wine, flowers, cake, dinner, homemade negronis, stuffed animals, homemade cookies, bread, and other treats. And we got hundreds of loving messages from friends, acquaintances and strangers, and offers to bring food to the hospital. The outpouring of support has been incredible.

This morning, Michael and I got Calvin out of bed. With great help from both of us—Michael supporting Calvin's body from behind, and me in front holding his hands—our boy took three very shaky and tentative steps. A little smile crept across his face as if doing something novel or accomplishing something great. We sat him down on the soft carpet in our bedroom where he crawled a few yards, his left knee turned slightly inward. Once more, we got him into a stand, but he held his leg off the ground as if lame, so we scooped him up and put him back into bed, lavishing him with praise for having done such a good job. Hours later, I hoisted Calvin out of bed to change his diaper, then stood him up for a moment, bracing him. He didn't want to put his foot down and appeared not to be able to bear any weight on it, so I lifted him back into bed again where he remains and is resting.

If today is any indication, Calvin's road to recovery looks like it might be a long one after all. I worry he won't get back to walking as well as he did before the accident, which, though his gait was awkward, he could get around to a great extent by himself without falling or tripping on his turned-in feet. I worry he might be in pain without being able to tell us. I worry he'll regress in other ways. I worry about future accidents. As for going back to school next week, it doesn't look possible without a wheelchair, which would mean the staff would have to do a lot of transfers from chair to changing table and back again. There's plenty of other things to consider—the state of his incision and protecting it, his strength, his stamina, his safety, his ability to heal and rest, his happiness, the risk to him.

This incident has been disconcerting and stressful, and has given us a lot to ponder. But, it has also been a cause to celebrate our good fortune—for our healthcare, our community, our home, our family, our friends and neighbors, for each other.

Yes, the road to recovery might be a long one, but one thing is clear: none of us will be walking it alone.

4.18.2022

gratitude today (is hard)

The scent of hyacinth is so intense it seems to reach my gut, just below the place where the ache of want, angst, sadness, anger and resentment settle. I try my best to sooth these feelings using gratitude. It isn't always or wholly possible—or necessary; I need to taste the fullness of my sentiments lest they eat me up.

Gratitude today is hard. Calvin is in his sixth day confined to bed. He likely has a broken hip. It needs time and space to rest and mend. He injured it at school last week just trying to sit. He tumbled when he partly missed the seat. I'm not sure where his one-on-one was. His school hasn't told me yet. It appears, not on him, at least not close enough to block his fall. Thankfully, he's nothing if not resilient.

Gratitude today is hard. Hard because Calvin is itching to exit his bed. But we can't let him put weight on his left leg. We're getting better x-rays soon to clearly see his injury's extent. The only time he gets out of bed—so far—is when he's soiled or wet. Crouching down, I scoop him up, lift and set him on his changing table. It isn't easy. He's ninety-two pounds. But I'm strong, I lift correctly, and he holds tightly around my neck. When we wipe him up, we must take care not to move or jar his leg in ways that hurt, which makes the cleaning difficult. He can't use the potty for the foreseeable future. Instead, we have to deal with dirty diapers and "blowouts" again. One step forward, back two steps. The situation is disconcerting at best.

Gratitude today is hard. Calvin won't be able to walk for up to six weeks. I'm not sure he understands his restriction. I wonder if he'll suffer setbacks. I wonder how much his muscles will atrophy. I wonder how well he'll be able to walk when it's all said and done. I wonder if he'll suffer long-term pain, the kind which isn't obvious to others, but bothers nonetheless.

Gratitude today is hard. Calvin's movements are already seriously limited, more so during this pandemic. He can't just go wherever he wants whenever he wants, like other eighteen-year-olds. He has to go where I go, and I with him, except when he goes to school. Now his freedom is further restricted. I had been hoping, as the weather warms, that I could take him for mini walks on the back roads or for a yards-long stroll in the nearby woods. All that is now impossible. It's not even clear if I can manage lifting him into the car just to take a ride on back roads.

Gratitude today is hard. Our boy is defenseless, helpless, trusting, innocent. He relies on others for exactly everything. Expects us to be there for him. To help him navigate and to assist. To catch him when he falls and trips. Though he walks quite well on the straight and flat, I tell those at school to stay close, to keep their eyes on the ball—on him—at all times, especially near obstacles, on stairs and in crowded halls. His poor vision and bad coordination are mostly why he has a one-on-one. It isn't the first time he has suffered injury. Regrettably, humans are fallible. I for one should know.

Gratitude today is hard. Even so, I'll look for reasons to be thankful: a walk alone in the forests and on back roads; sunlight streaming through trees and windows; a cozy home; tons of dear and generous friends; an awesome dog; a supportive, interesting, creative, loving husband, the meals he makes and the way he is with me and his son; the rich fragrance from hyacinth sprigs picked just for me; most of all, my son Calvin, his sweetness, affection and awe-inspiring resilience. He's always there for me no matter what, even when I stumble in my mothering, graciously, he catches me when I fall.

4.14.2022

helpless

I was going to write about loss and grief. I was going to write about goldfinches nibbling thistle, and robins tugging at stubborn worms, and cardinals flashing by windows, and woodpeckers warbling in the forest. I was going to express my astonishment at trees and shrubs doing what they're supposed to do when they're supposed to do it and in perfect unison with others of their same making. I was going to mention how all seems right in this little corner of the world despite ever-present loss and grief, while at the same time everything is so messed up here at home and abroad, and how I feel so helpless to change the things that seem to matter most.

But partway through writing this post, I got a call from the nurse at Calvin's high school. He'd suffered a fall, was hurting and not able to put weight on his left leg. The nurse somberly relayed to me that, while trying to sit in his chair, Calvin "got one cheek on and one cheek off," and he went down hard on his elbow and hip as if the chair he was expecting to be there wasn't, and the ed tech had heard something in Calvin crack. I said, "fuck,"—one of my worst nightmares having seemed to come true—then dropped everything and went to fetch my poor little helpless boy.

So, Tuesday, instead of writing or gardening or taking a much-needed, long-overdue nap, I drove Calvin to our local hospital's emergency department where his beloved teacher, who had loaded him into the car and followed us there, had then lifted a miserable Calvin out of the car and into a wheelchair, waited with us until we got a room.

During the seven hours we spent in the hospital, Calvin underwent three painful hip X-rays and one CT-scan of his pelvis, hip and femur. In between, I sobbed in his arms, feeling completely helpless. As he wailed and moaned, trembled and sweat in waves of intense pain, I wanted to disappear, my motherly anguish becoming worse recalling the horrific hospital episodes of the past: Calvin's fraught birth; his painful, poorly-placed nasogastric tube; his excruciating, unnecessary, bloody intubation; his stubborn, forty-five minute seizure during which Michael and I sat by helplessly, thinking we were kissing him goodbye.

Regrettably, the CT-scan revealed some fat and blood in Calvin's hip socket indicating an occult (hidden) fracture in his hip socket or the femoral head. We'll know for sure a week from Friday when he goes in for more X-rays. We're hoping he won't need surgery. In any event, Calvin will have to keep weight off of his leg for as long as six weeks. Yesterday, I did some heavy lifting, calling doctors and medical supply companies (for a hospital bed and a wheelchair), cleaning up vomit, changing all of Calvin's clothes and bedding twice, doing laundry, trying to get him to eat and drink, changing several dirty diapers—something we've rarely had to do anymore since he's been going on the potty, and a colossal effort with such a big kid whose hip kills him, and who is inclined to put his hand in his poop—and keeping him comfortable and content in bed where he's regrettably sequestered without really understanding why. I can't quite wrap my head around managing Calvin, my hyperactive infant-toddler-teen who suffers seizures and akathesia and is incapable of attending to a screen or reading or playing with most toys, for such an extended time while confined to a wheelchair and bed. Most of all, I feel sorry for Calvin being restricted from the things he loves to do and needs most, which is his jumper—his most favorite place in the world for allowing him to move without expending energy—going to school, traipsing around the house and yard, using the potty and taking a bath (jeezus, I just realized: how in hell are we going to bathe him?!) Once his pain subsides, which I hope is soon, I wonder if I'll be able to manage getting him into the car for rides on the back roads. Suffice to say, we're stuck at home again for the foreseeable future, and helpless to do anything else.

Thankfully, this home is a damn cozy one. Thankfully, our community is astoundingly supportive: a neighbor has offered to walk Smellie anytime; his teacher came by yesterday with the assistant superintendant of special education and they helped while Calvin retched; his teacher went to the store to buy us Pedialyte and Milk of Magnesia; a friend just brought by flowers and many others have offered their help; I have a ridiculously hard-working and supportive husband. In essence, I have so much to be grateful for!

Even so, as I sit here in Calvin's room tapping on my laptop while listening to some quiet music, I worry, with fresh anger and resentment, about my child and his unfortunate mishap, wondering if he'll fully recover and without chronic pain. I consider what a hard and bittersweet spring this is going to be seeing Calvin's peers graduate from high school and go on to bigger and better things. I think about their parents, envious of some of them who will soon be empty nesters enjoying newfound liberties. I meditate on the innocent people in Ukraine who are suffering dire and dreadful atrocities.

But I also think about the podcast I heard the other day in which a woman describes immense grief and loss as not necessarily lessening over time, but instead feeling as though they diminish with each new, rich life experience that expands around them. And though there are spikes and waves of grief and loss, especially during incidents like these, I can attest to feeling as if those emotions have dwindled, if slightly, since grief nearly took me down when I learned about Calvin's malformed brain, then hammered me again when he began suffering seizures and side effects from the drugs meant to stop them.

As with all my blog posts, I write this one not knowing where it will ultimately take me until I've "penned" the final words. Now, it having fully unfolded, I reflect on what I've written about the sorry state of Calvin's fractured hip and what it will mean for us. And I wonder if this might be one of those expansive experiences, and though it mightn't be true for Calvin, I realize I'm not really helpless at all. Rather, in my community, friends and family, I've got all the help in the world.

4.05.2022

movements

The sun is on my face, the wind feels and smells as if I were at the beach. The pines are whispering. Through them, I hear the lonely drone of a small airplane. Despite the twinge in my back and hip, plus a tinge of melancholia, it feels good to be moving.

This morning, Calvin was not his best self. His recent conscious-onset morning seizures have put me on edge. They are typically rare, and lately have seemed to come out of nowhere. I'm afraid to send him to school lest one happens on the bus, in the hallways or classroom. Despite seeing hundreds of them over the years, they're hard to take, and I can only imagine how they make him feel.

As I stroll down a sloping road, moving from one side of the black tarmac to the other while noting the big sky above me and amber fields spanning out from my flanks, I sink into my sadness and angst. I ponder their roots, which have taken ahold and perhaps manifested in my stiff, achy parts. I assume it's simply the weight of the world: the damn protracted pandemic restricting our movements and gatherings; the war waged against Ukraine and elsewhere on this small, precious planet; the terrorism and suffering of so many innocent beings; too many deceitful, badgering, insincere, criminal leaders.

Then, I think about Calvin's burdens: his inability to effectively communicate; his incontinence; his poor vision and coordination; his seizures; the drug side effects he suffers. He's confined to his own little messed-up world in which his movements are greatly hindered.

And yet, my poor boy can't sit still. He's on and off our lap almost in the same moment. He often paces without purpose. He sits at the table for mere minutes, taking a few bites of food before being compelled by something to get up and move. I know what possesses and troubles him: impending seizures and, perhaps mostly, epilepsy drugs and the lingering effects of their withdrawal.

One of Calvin's worst afflictions is a drug-induced movement disorder called akathisia, which, like most drug side effects, I have researched and diagnosed myself:

akathisia: akəˈTHiZHə-ˈTHizēə | noun | A state of agitation, distress, and restlessness that is an occasional side-effect of antipsychotic and antidepressant drugs.

and:

A movement disorder characterized by a feeling of inner restlessness and a compelling need or urge to be in constant movement [despite fatigue.]

For the longest time, I was convinced Calvin's restlessness was just from years of taking benzodiazepines. More recently, however, I think it could also be from one of his current antiepileptic drugs, Keppra, aka leviteracetam, which he's been taking for over ten years. I fear the (brain) damage from both drugs might be permanent.

I read the literature. It's all there, documented on multiple reputable websites (my go-to is rxlist.com): Keppra can cause drug-induced movement disorders. Calvin's akathisia manifests mostly in his restlessness and repetitive, aimless pacing, but I wonder if it's also displayed by his jaw-jutting, teeth-grinding, hyperventilating, knee-knocking, frantic fingers (pill rolling), and what I call crab-clawing. I believe the akathisia is why he likes riding in the car and spinning in his jumper so much; they allow him to move without expending much energy. 

Drug-induced akathesia is a miserable affliction which causes some sufferers to feel so achingly restless, frantic and panicky that they take their own lives in desperation. I can't begin to understand what a child like Calvin—who doesn't grasp abstractions such as the notions of tomorrow, life and death—must be thinking or feeling when he is most afflicted, which is pretty much whenever he's awake. I've seen him in states of panic, pain, serious discomfort, distress, malaise and misery, which are often impossible for me to alleviate (thankfully, though, extra doses of my homemade THCA cannabis oil seems to help.)

As I approach the final stretch of my walk, the sky is blue and painted with clouds. The sun is beating down. The wind is still sifting through my hair. The road is flat and smooth, and my bit of melancholia still lingers, though has lessened. I think about how amazing it would be if Calvin could walk these back roads with me without faltering or balking. Maybe the fresh air and quiet could somehow relieve some of his own troubles. Perhaps there's a chance one day my wish could come true. I'll keep embracing hope. Sometimes it's the only thing to hold onto.

Photo by Michael Kolster

3.28.2022

march by numbers

too many fitful nights and risings before 3:30 a.m. one tired mama. four grand mals. zero focal seizures. three ice cream cakes assembled for friends. two cool, glow-in-the-dark nike running shoes from joanie. a bunch of 5Ks and a few four-milers equals one tender iliac crest. several weeks overcompensating. one foolish kid-lift. one wrecked, spasmy back on the mend. twenty-eight days abstaining from running (insert several sad emojis.) one book on healing back pain due to tension caused by the stress of anxiety and resentment; an excerpt reads:

her life remains as hectic as ever, she is perpetually tired and harassed, and she never feels as though she has done as well as she should.

it is pointed out to her that she will never cease being a perfectionist, that she will always have too much to do, but that the secret of getting over TMS (tension myositis syndrome) is not changing oneself but simply recognizing that the combination of the realities of her life and personality cause her to generate an enormous amount of anxiety and anger.

yes, anger too. she has probably never acknowledged the fact that although she adores her three little girls, she is simultaneously angry at them for what they require of her. the idea that she could be subconsciously angry at her children is outside of her experience. when she grasps the idea that the cure is in the acknowledgment of such unacceptable subconscious feelings, the pain will cease.

. . . one deep grateful breath for the validation of what i already consciously acknowledge but hadn't applied to injury. two stinging, weeping eyes for the suggestion. three major turkeys: one five-foot-one, ninety-two-pound boy giving me a run for my money; one ridiculous dog; one hard-working (seven days a week) husband. countless hugs from my son. a bunch of tasty perishables hand-delivered from friends. several good movies. four ounces of crushed cannabis bud being made into thca oil for calvin. one faded bouquet of tiny white daffodils with peachy centers given to me in exchange for a slice of ice cream cake. a dozen edited manuscript chapters. too many frigid days for this fair-weather, west-coast "kid." countless magnificent skies, clear and cloudy. nine- and ten-day stints between most of calvin's seizures. four fingers crossed that his seizures lessen. scores of crocuses smiling up at me. zero nights out on the town. zero family visits. zero vacations to exotic and amazing places. three family excursions in the confines of our car. one good cry. two social security supplemental income applications to complete for calvin. one pile of smellie's vomit scraped and rubbed off the rug. one cracked iphone. several tears shed. four covid tests for two long-overdue dinner parties. infinite thanks for friends who love and hug and kiss this zany chick. three bird baths quenching thirsty cardinals, jays, robins, chickadees and squirrels. scads of delicious dinners cooked by one loving and talented husband. a few quarrels. several long car rides. fifty-five, or so, nice walks on the trails and back roads. handful of friendly and much-appreciated encounters with strangers and friends. infinite satisfying panoramas. abundant gratitude.

3.21.2022

wishing on stars

The weight of the world weighs heavily, sometimes on me, often on others, terribly so on the people trapped by disability, illness, poverty, hunger, and by war and its unconscionable and needless suffering.

Calvin, war and suffering are just some of the reasons I don't believe in god. Not the Jewish one, not the Christian one, not the Muslim one. Not any god of organized religion over which so much of the world wages its wars. I don't believe in the notions of heaven or hell—except the ones here on earth—or Satan, or religion's anthropomorphic and patriarchal architectures, or the Bible's stance on slavery and subjugation. It doesn't make sense to me to worship a static, anachronstic god when the universe is expanding and evolving. What I do believe in is the breathtaking interconnectedness of everything in the universe—the planets and stars, the rocks, the forests and seas, the animals—and how we all are a part of it and will rejoin it in a more literal and elemental way when we die, when we again become stardust. The feelings I have for the sun and the moon and the far-off galaxies and the pull they have on me—this wishing on stars I sometimes do—is powerful spirituality. My energy will not be lost when I die. It will live on in the memories of those whom I have touched and in the soil and sea where my ashes might scatter. I will sink into and become earth and sky, wind and river. I am and will be universe.

But when a friend tells me they pray for me, I understand, even appreciate it. And when someone whom I've never met offers me this kind of solace on a difficult day in a way which resonates in my bones, I melt into her words and heal just a little bit. In reading this, perhaps you can see why:

each day when I light my candles I say the names of your family aloud, with the others I choose to remember in this daily way, and I pray for peace and healing and love for you all and I carry a ruby for grief and an obsidian for comfort and a tiny icon of mother and child and a small wooden angel and some other things which i carry in my pockets and find in my hands several times a day and though it is the way of a child to hold to such talismans i allow myself this touching home, these miracles of the universe, and i reach for my mother and father, and my grandparents, and dear friends i have lost and for my own lost self and for all those who struggle and all those in pain and like a child i wish on stars and hold my stones which once were stars and i feel the love of the universe and send some to you and to your small miracle and trust it reaches your family in some way, like sunlight on a cheek, like sea mist, like hope, like yes, like moonlight, like a small bird shaking her feathers, like a shadow of a tree bending just slightly in morning air, like bending on one knee, on both knees, like bending the head with hands forward pointing from my heart to yours

—Elizabeth C.

I, too, send my deepest gratitude and love to you, Elizabeth, and to all of you, dear readers—brilliant stars—who lift me up, fill my heart, dry my tears, inspire me, send your love in prayers and words and wishes and gifts. You make my world—my universe—a better place to be, a place where, despite my burdens and my son's suffering, I can believe in the power of wishing on stars, and in wishing for peace and love and wholeness for the rest of the world.

3.17.2022

breathless again

As my mother once told me she used to do, this morning I tried to drown my sorrows in the shower. Though my eyes stung and my throat began to feel swollen, only a few tears fell. I so wanted and needed to do some serious weeping—about my son's afflictions, the suffering of Ukrainian civilians being bombed by Russian troops, the miseries of this damn pandemic—but instead, all my body had to offer was a halting breathlessness under the stream of hot water.

A couple of hours earlier, not long after waking for the day, Calvin had a rare, conscious-onset grand mal seizure in his jonnny-jump-up. Michael had just stepped out for his early-morning run, so when Calvin began to seize, I ran to the door and yelled Michael's name into the sleepy street, hoping he was still within earshot. Moments later—knowing well what my calling-out meant—he rushed back in through the door.

Unable to pry Calvin's convulsing, vice-like body from the jumper, we managed to get him onto his side—which limits the risk of aspiration—by supporting Calvin's upper body on Michael's chest and his hips and legs on my lap as I sat in a chair pulled under his jumper. Once the seizure was over, we were able to slip Calvin out of the jumper and onto the floor where I placed a folded blanket underneath his head. After a few minutes of our son's own halting breathlessness, together Michael and I hoisted Calvin onto the green couch where he laid in a daze.

Regrettably, it has been only two days since our son's last grand mal. I had just been thinking about how extra homemade THCA cannabis oil often seems to prevent Calvin's seizures from clustering if given in the hours and days after each initial seizure. I wish I had given him extra cannabis oil yesterday afternoon and last night with the hope of preventing this morning's fit, especially considering the advancing full moon which also seems to tug his seizures into existence.

Thankfully, Calvin's conscious-onset grand mals have become a rare occurrence since I began giving him my homemade cannabis oil eight years ago. He used to have them regularly, and frequently in the bathtub. They virtually disappeared with the advent of the cannabis oil, which relegated his grand mals to the middle of the night when he's asleep and secure in his safety bed. Unfortunately, his daytime grand mals began to reappear in the last several years, albeit with little frequency; they still account for just a small handful of the sixty to seventy grand mals Calvin suffers in any given year.

So today, once again, I'm stuck indoors with an unwell kid who is going between resting on the green couch to fidgeting and walking in aimless circles; I doubt he's out of the woods yet. Thankfully, I was able to get outside for a short stroll with Smellie as the sun was rising over the pines that skirt the fields. Thankfully, I got to take a shower before Michael left. Thankfully, I was able to breathe peacefully as the morning sunshine lightly gilt the room (instead of hiding in a bunker without food or water, breathless, while being shelled by the enemy.)

And, like a gift, just as I was wrapping this up while Calvin rested next to me, I got an email from a friend and former Bowdoin College student, Marina Henke, who did graduate work in radio and podcast documentary studies at the Salt Institute last fall. She attached a link to the profile piece she did on me, which I'm now able to share widely. I invite you to have a listen; it's beautiful and telling, and only seven minutes. Hearing it again unleashed all sorts of feelings in me, as well as some much-needed, hard and cathartic weeping.

Calvin recovering on the couch after this morning's grand mal.

3.14.2022

matter of reflection

There's so much to be grateful for every day—running water, food, heat, electricity, the freedom to move, democracy. We've got infrastructure that pretty much works, and grocery stores regularly stocked with essentials for our homes. We've got restaurants in which to dine, and hospitals where we can (hopefully) heal if we're ill or hurt. We've got Amazon and Apple, Zappos and Google, Netflix and Zoom. We've got public servants: librarians, teachers, fire fighters, legislators, road workers, bus drivers, garbage collectors and cops. We've got farmers, truckers, builders, manufacturers, artists, musicians, chefs, servers, grocery store and retail clerks. We rely on all of them to supply what we need and want, and to get shit done. They're there for us despite some people's petty tendency to complain and protest. 

There's so much to grieve—war, illness, debt, death. So many things to love, to loathe, to lament. These are strange and harrowing times. The world is turning upside down and inside out. Millions are hurting while billionaires continue to enrich themselves by exploiting the labor of others; they pocket record profits by gouging the rest of us (blame them for stagnating wages and inflation) and by not paying their share of taxes. And there's another power grab: the unjustified, unprovoked war that Pootie is waging against Ukraine. It's all so sick and twisted.

I consider the Ukrainians, and others in war-torn nations, whose homes, livelihoods and families are being blown to smithereens. Because of Pootie's war, they have little to no access to their homes, their schools, their hospitals, their critical medications to treat chronic conditions. I imagine legions of them seizing, not just from epilepsy, but from traumatic brain injury, diabetes, dehydration. And what of expectant mothers, new mothers, infants and preemies? Pootie's troops are bombing children's hospitals and maternity wards. His lies and crimes against humanity are unfathomable. Someone has got to bring him to heel.

Here, I reflect on my fortune. I recline on a comfortable couch with a full belly, a small glass of red wine and a large one filled with clean water from a tap that never runs dry. My only palpable worry at the moment is whether my epileptic child might seize tonight. Even then, he's likely to make it through, unlike so many of war's refugees trying to flee besieged cities.

Wartime calls to mind a favorite rumination from, The Celestial Worlds Discover'd, Or, New Conjectures Concerning the Planetary Inhabitants and ProductionsIt goes:

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, 1698

It is clearer now than ever how much Pootie and his stooges' evolution as human beings has been stunted. I wonder what tainted ingredients make such depraved megalomaniacs.

My thoughts return to little Calvin sleeping safely and soundly upstairs. I wonder what he dreams about. I wonder if one day he'll be orphaned. I wonder if one day soon war will return to these shores. Then, I recall images of the innocent Ukrainian people caught up in the Russian invasion: a mother and her children shelled while trying to escape bombardments; a man pushing his bicycle through ravaged streets strewn with debris; a father clutching his dead child riddled with shrapnel; bodies wrapped in black plastic being thrust into mass graves; mothers grieving over their dead boy soldiers; a pregnant woman dying on a stretcher. And I wonder again, like I do about Calvin's suffering, how much these good people can endure, and what more I can do to ease it.

Photograph: Evgeniy Maloletka/AP

3.07.2022

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.

a hard rain's a-gonna fall

Because Ukraine, because tyranny, because artists like Bob Dylan and Patti Smith, because the power and beauty of music that calls us to think and weep, resist, ponder and dream.


Oh, where have you been, my blue-eyed son?
Oh, where have you been, my darling young one?
I’ve stumbled on the side of twelve misty mountains
I’ve walked and I’ve crawled on six crooked highways
I’ve stepped in the middle of seven sad forests
I’ve been out in front of a dozen dead oceans
I’ve been ten thousand miles in the mouth of a graveyard
And it’s a hard, and it’s a hard, it’s a hard, and it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, what did you see, my blue-eyed son?
Oh, what did you see, my darling young one?
I saw a newborn baby with wild wolves all around it
I saw a highway of diamonds with nobody on it
I saw a black branch with blood that kept drippin’
I saw a room full of men with their hammers a-bleedin’
I saw a white ladder all covered with water
I saw ten thousand talkers whose tongues were all broken
I saw guns and sharp swords in the hands of young children
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

And what did you hear, my blue-eyed son?
And what did you hear, my darling young one?
I heard the sound of a thunder, it roared out a warnin’
Heard the roar of a wave that could drown the whole world
Heard one hundred drummers whose hands were a-blazin’
Heard ten thousand whisperin’ and nobody listenin’
Heard one person starve, I heard many people laughin’
Heard the song of a poet who died in the gutter
Heard the sound of a clown who cried in the alley
And it’s a hard, and it’s a hard, it’s a hard, it’s a hard
And it’s a hard rain’s a-gonna fall

Oh, who did you meet, my blue-eyed son?
Who did you meet, my darling young one?
I met a young child beside a dead pony
I met a white man who walked a black dog
I met a young woman whose body was burning
I met a young girl, she gave me a rainbow
I met one man who was wounded in love
I met another man who was wounded with hatred
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall

Oh, what’ll you do now, my blue-eyed son?
Oh, what’ll you do now, my darling young one?
I’m a-goin’ back out ’fore the rain starts a-fallin’
I’ll walk to the depths of the deepest black forest
Where the people are many and their hands are all empty
Where the pellets of poison are flooding their waters
Where the home in the valley meets the damp dirty prison
Where the executioner’s face is always well hidden
Where hunger is ugly, where souls are forgotten
Where black is the color, where none is the number
And I’ll tell it and think it and speak it and breathe it
And reflect it from the mountain so all souls can see it
Then I’ll stand on the ocean until I start sinkin’
But I’ll know my song well before I start singin’
And it’s a hard, it’s a hard, it’s a hard, it’s a hard
It’s a hard rain’s a-gonna fall 



Written by Bob Dylan and performed by Patti Smith