intimate decisions (american dystopia)

I've been pregnant twice. My sweet, pure, legally blind, nonverbal, incontinent, autistic, cognitively impaired, seizure-plagued son, Calvin, is my only child. At least three of my friends who were in committed relationships when their contraception failed were able to get safe, legal abortions after discussing the intimate decision with their partners. One of them was the mother of two, another went on to have two children, and the third remains child free. I'm not pro-abortion and I've never had one, but after suffering the miscarriage, I underwent a D and C. My only worry was that, because of my age, I might not get pregnant again. That worry was shortly replaced by a wholly different kind of worry: Calvin, my little apogee and abyss.

The recent Supreme Court reversal of Roe vs. Wade, which has eliminated Americans' constitutional right to abortion—aka body autonomy and reproductive freedom—is as astonishing as it disturbing. It serves as evidence of the Conservative majority's callousness, ignorance, and chauvinism.

Callousness—for the blatant disregard of the physical and emotional harm millions of girls, women and their families will suffer when they are forced to carry unplanned, unwanted or medically problematic pregnancies to term. Women and girls will die without access to safe abortion. They'll die in childbirth itself. When they have dangerous complications from miscarriages and stillbirths, they'll die foregoing access to medical care for fear they'll be suspected of attempting to abort in states that have banned the practice. Black girls and women, whose rates of maternal death are three to four times higher than whites, will disproportionately face the most dangers, as will poor people and other people of color. How are these circumstances not examples of depriving women and girls of their constitutional right to pursue life, liberty and happiness? Despite these lethal risks, anti-abortion advocates claim this decision is somehow pro-life. Moreover, anti-abortion advocates tend to oppose measures known to greatly reduce abortions such as easy access to contraception and comprehensive sex education, and social programs such as universal healthcare, paid family leave, childcare, universal pre-k and other programs aimed to help mothers and fathers avoid the financial and logistical hardship of raising children. It sickens and pains me to see and hear them celebrating this decision, this most recent version of American dystopia.

Willful ignorance—for the apparent refusal to seriously consider and truly understand—or care about—the infinite and deeply intimate reasons why millions of women and girls might want or need to have abortions: complications such as ectopic pregnancies, fetal abnormalities, extreme youth or advanced age, family size, financial woes, career aspirations, rape, abusive relationships, health of the fetus or the mother, or simply that they don't want children. Forcing women and girls to unwillingly carry their pregnancies to term is tantamount to torture. But these facts don't matter to a sanctimonious, sexist court which has relied on precedent from a century-and-a-half ago when women were not equal participants in society or government and were barred from voting; Alito cited in his draft decision an English jurist who defended marital rape and had women executed for “witchcraft.”

Chauvinism—for holding the erroneous, absurd and sexist notion that half of all Americans don't have a fundamental right to control their own bodies and destinies. As some wise woman said, if men could get pregnant, abortion would be a sacrament. Chauvinism—for the way the decision hastens our nation to a place of (worse) female subjugation and punishment. Chauvinism—for the way the decision thrusts us into an American dystopia where surgical abortions will again be clandestine, will again result in rape, and will again be dangerous and lethal. Again, women and girls forced to carry pregnancies to term will be unjustly denied their constitutional right to life, liberty and the pursuit of happiness.

The Conservative Justices have scapegoated and punished girls and women by imposing their fundamentalist, patriarchal, religious and sexist agendas on them, ones to which a growing number of Americans—including some religious people—do not prescribe. The Justices used the absurd originalist argument that, because there is no explicit mention of abortion in the Constitution, women are not guaranteed access to it in their pursuit of liberty. It's worth noting that there is no explicit mention in the Constitution giving men the right to impregnate girls and women.

You know you're living in an American dystopia: when the rights of an eleven-year-old rape victim matter less than the zygote, embryo or fetus inside her resulting from that rape; when a government entity—particularly one made up mostly of conservative religious white men—attempts to control women's and girl's bodies by forcing them to carry pregnancies to term risking dire physical and emotional health outcomes, particularly in a nation that has one of the worst maternal mortality rates in the developed world; when imaginary lines drawn on a map of a nation where white colonialists slaughtered indigenous people and stole their land is what determines whether girls and women become the mothers to their rapists' children. Note: beware the anti-abortion push for a federal ban on abortion; if republicans gain control of congress this November, we'll be one step closer to that dystopia.

Our sweet boy Calvin, who I chose to have despite knowing he was missing most of the white matter in his brain, has made life for us very difficult and harrowing at times. I can't say for certain what I'd have done had we known earlier and for certain that things would turn out this way and that Calvin would suffer so. What I do know is that I wouldn't think of making that kind of deeply intimate decision for someone else. When our bodies are not our own to control, when legislators regulate them like commodities, we live in tyranny—an American dystopia—where, one by one, our other rights are at risk of being whittled away by a small group of powerful, callous, willfully ignorant and chauvinistic people who will never choose to hear our stories or walk even a few steps in our shoes.

Back when I was pregnant with Calvin, yet still child-free.
Photo by Michael Kolster

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.

a man and his family

This is a picture book I made years ago for Michael on Father's Day. I invite you to click the link below to read it.

Please click here and expand the Blurb image to page through the picture book ...

A Man and His Family

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.

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

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

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.