A photo taken at a backyard wedding in 1972 shows my older sister Liza—a skinny three-year-old, short on hair—holding a large pink balloon near her face. As a kid I remember believing that the balloon was a giant chewing-gum bubble. I wondered why I could never manage to blow bubbles that large.
My parents had one child at the time, but my mother was pregnant with their second. They were young, or so it seems to me: my mother twenty-seven, my father thirty-two. They had already been married for nearly six years, and they lived in an apartment in Watertown, Massachusetts, a small city next to Cambridge, where later, when I was in college, I would go with friends to eat at a diner with socially conscious coffee and long lines, driving there in a borrowed, wood-paneled car from my parents’ era, inhabiting my world and theirs simultaneously, looping through the streets and the years.
My brother, Jody—his given name was Joseph—was born a month early, in the early summer of 1972, but he was healthy looking, with a full head of red hair, and nothing seemed amiss. In photos taken near the time of his birth, my parents have smooth skin, ironic smiles, and a seemingly limitless collection of attractive woolen knitwear. Mostly, in pictures, they are on vacation: relaxed. They are obviously recognizable, and yet entirely different from the middle-aged people who became my parents in the eighties. Then they were early in their careers: my father was a journalist, an educator, and a sometime poet; my mother had left the first grade classroom to become an education scholar and was finishing her doctoral dissertation. They didn’t have much money, but they managed. My mother came from Baltimore and money; my father came from a less well-off family in northeastern Pennsylvania but certainly from professional-class comforts (Japanese woodprints, well-maintained Victorian houses) accumulated in sharp contrast to the previous generation’s working-class Irish roots, all crucifixes and rowhouses. My parents were on the way to doing well for themselves.
A week after Jody’s birth, though, the doctors found toxoplasmosis—a parasitic disease that exists benignly in many people—in a routine examination of the placenta. T. gondii, the parasite, lurks in various household and farm animals—cats excrete it in their waste, and it can be found in rare meat. In infected rodents, the wily parasite creates a phenomenon known as “fatal attraction,” wherein the smell of cat urine becomes appealing to the unfortunate mice and rats, who then seek out their own predators, thus ensuring the disease’s spread through unwitting felines. T. gondii’s implications for infected adults are as yet unclear but not particularly dramatic; it is anything but benign for fetuses, however. To avoid infection and the devastation that can ensue, pregnant women are warned against consuming rare steaks, changing kitty litter, or gardening, lest they pass the infection along to their unborn baby. It is possible for a pregnant woman to contract the infection without transmitting it, but my mother was not so lucky.
In the early 1970s, the disease in infants was catastrophic. In the weeks and months that followed my brother’s diagnosis, my parents would learn that he was blind, severely cognitively impaired, and hydrocephalic, and he suffered from both seizures and cerebral palsy. They wrestled with the new reality of caring for an infant whose needs would be large and unending. They chose to keep him at home and to try for another baby: my sister Caitlin, born healthy and comically fat, arrived two years after Jody’s birth.
I learned some of these facts as family lore, from stories told in passing at the dinner table or carefully imparted as the family station wagon traversed the broad streets of the Michigan town to which we decamped when I was four. But some I learned from the pages of my mother’s book, A Difference in the Family: Living with a Disabled Child, which she published when Jody was seven. I wouldn’t read the book until I was twenty-eight, riding the train from Grand Central Station to Westchester, where I was studying for a degree in Child Development. The copy I read was on loan from the library of my husband’s university: blankly navy, with that textured, plasticky veneer of re-bound books. The last name on the spine was my own.
I never bought a copy for myself. It would be easy to say that it was because I was a broke graduate student, but that same year I regularly paid large sums for matte-gray duck eggs at the Whole Foods on the Bowery, and I saved up (carefully, recklessly) for Swedish clogs that cost $350. So maybe I didn’t buy it because I felt that I should already have it. There is something shameful in not knowing the things with which we ought to be intimate.
In the New York Times, the critic John Leonard called the book “heart-mending.” He assumes that the reader is not the author’s daughter. I do not think that the book mended my heart.
Before meeting my husband, I dated a man about whom one could say politely, if one wished to be polite, that he had a problem with alcohol. A few years after we had parted ways, we found ourselves at a party together. A neighbor offered me a ride home, and this ex of mine invited himself along, folding his long limbs into the backseat of my neighbor’s small car, and proceeded to rant and rave about various petty grievances for the length of the drive. I did not turn around; I am prone to carsickness. I wondered why I had ever allowed myself to become involved with him. At one point the ex leaned forward, his breath humid and boozy, and denounced someone we knew as “so stupid, fucking retarded.”
“Oh, Max,” I said, long suffering. “Don’t say that.”
“Sorry,” he said. “I forgot about your dead retarded brother.”
The words were sharp—he filed them down for maximum precision, so they would puncture the tissue. But I have no memory of being hurt. I was surprised and interested in Max’s cruelty, but Max was no longer mine. More saliently: was my brother even mine? Your brother, he’d said. He was dead, yes. Was he a brother? If not, what was he?
Sometimes when I talk about Jody I say “my brother.” Sometimes I am careful with my words and say, “My parents had a child.” Jody died when he was nine, two years before I was born. Liza was twelve, then, and Caitlin was six. He never was a brother with whom I shared meals or posed for photographs—nor have I ever had another brother. He never bullied or bothered me or flirted with my friends, nor could he have done so had he lived.
He was gone by the time I arrived, though I realize now that he had not been gone long. When I was a child I thought two years was a lifetime. It isn’t. His family—my family—was grieving when I was born.
In 1980, the child psychoanalyst Selma Fraiberg, basing her insights on case studies, wrote of the way that “ghosts in the nursery”—past trauma in families—affect parents, babies, and the relations between the two. Her prose is almost campy in its horror: she cautions against the “emotional starvation” that can result from parents’ being haunted by tragedies including, but not limited to, “bleak rural poverty, sinister family secrets, psychosis, crime, a tradition of promiscuity in the women, of filth and disorder in the home…” Still, her insights about the transmission of trauma from one generation to the next changed how we think about the past and its ability to mutate the lived experience of even the smallest members of society.
In 1990, the pediatricians T. Berry Brazelton and Bertrand Cramer described the long tentacles of the past in slightly more moderate terms:
It is a fundamental fact of human relationships that new attachments are always based on old ones. They also…overlap with one another. Normally, this repetition of the past is seen in discrete signs: the child is said to resemble his grandfather, carries the name of a loved relative, or is thought to be developing the same talent as an admired adult of the parent’s childhood. More subtly, a child may evoke the same type of emotional response that the parent had experienced in his or her childhood.
With their black bags full of Freud and unarticulated drives, these practitioners remind us that our relationships are not built from the ground up: infants do not simply enter, stage left, freshly imagined. The beginning comes long before birth, even before pregnancy. Each newborn drags with her the characters who moved and spoke before her. The new child carries the old children’s battered props, wears their stained costumes. She chews the scenery that they, too, sat upon or slumped against.
There were a few copies of my mother’s book in our house when I was growing up, although most were translations—into Hebrew or Italian, for example—that none of us could read. This, too, seems like a decent excuse for my avoiding the book, although I don’t think it would stand up to much scrutiny. A friend read it in college. He was interested in my mother’s success, I think, and also nosy: he was intrigued by the mechanics of other people’s families. His own sister was troubled (or troubling). He thought the book was very good. “You should read it,” he said, as we sat together on the marble steps of the library.
“Yeah,” I said, noncommittal.
“You really should read it,” he repeated. He was full of prescriptions: bands to listen to, people to date or not date, restaurants to try. I did not read it.
I was afraid of what the book might contain: a family that was complete without me, defined by a member whom I have never known. The long distance at which I could keep the sorrow associated with Jody’s illness and death was comfortable. I worried that if I read my mother’s words, the sorrow and sadness that excluded me (happily, miserably) would come to life. That I would then be forced to reckon with who these people—the people I presumed to know best—really were.
I was quick to correct people who contorted their faces into an expression of condolence upon hearing that my brother had died. “Before I was born!” I would reassure them. “I never even
knew him!”
In fact, I was afraid of my brother, the only other redhead in my family: afraid of his disability and of our resemblance. I’d always liked the photo that hung on the wall of my sister Caitlin’s staircase: toddler Caitlin stands on chubby legs, tending carefully to a thin, awkwardly-shaped kid with a huge, gummy smile, who is strapped into a swing. Jody there is comfortably alien, securely other, babylike.
I asked my parents once if I was a mistake—after someone made a joke about “surprises” upon learning that I was nearly nine years younger than my closest sibling.
“No,” my mother said wryly. “A replacement.”
I knew that she was joking, but I also knew that she wasn’t.
When I finally read the book, sandwiched between commuters on the Harlem Line as the density of the Bronx gives way to the green of Bronxville, it is different from the one in my head. It is both a memoir and a synthesis of first-person accounts by other parents and siblings (including my own) of disabled children and adults, sprinkled with reviews of the literature on families of children with disabilities, and guidelines for doctors and professionals working with such families.
My sisters’ voices ring true. Liza is not so different at eleven from herself at forty: sharply perceptive and critical of my mother. The people mentioned are known to me: my mother’s best friend, Jane, and her asthmatic daughter. Reiko, the artist from Japan whom my parents hired to help care for Jody and my sisters. The values and ideals of family and marriage that emerge are unmistakably familiar, but there are discordant elements: my parents are unhappy at forgoing their shared tennis game. That this would be mourned as a loss suggests an improbable commitment to sportiness. By the time I was born my parents were in their forties. In my lifetime they were never young, as they were when they embarked upon parenting my siblings. Today, my parents sit together and read for hours; they walk slowly along the beach, stopping to look for seals. I catch myself wondering, idiotically, Did Jody make them old? Did I?
My mother’s voice in the book is different. In his review, Leonard writes that she is “calm, wise, unflinching,” and this is true. But the mother I know also loses her phone and her cotton print purse routinely, and recruits my father to find them—she has declared herself “bad at looking for things.” She flinches, visibly, at other people’s pain. She can become frazzled in an emergency or alarmingly fatalistic. Once an employee of the Department of Motor Vehicles presented her with a series of impossible steps for renewing her driver’s license by mail. “Well,” my mother barked into the phone, “what do you suggest I do? Hang myself?”
This woman isn’t visible in the book; but the pain of a mother in the throes of grief and helplessness is rendered acutely. “I remember during the early months of Jody’s life,” she writes,
the anguish with which I contemplated the distant future. Jody cried constantly, not irritable, hungry cries, but heartrending shrieks of pain. Vain efforts to comfort him filled my nights and days. One evening when nothing seemed to help, I went outside, intending to escape his misery for a moment, hoping that without me he might finally fall asleep. Walking the summer darkness, I imagined myself at seventy, bent and wrinkled, hobbling up the stairs to minister to Jody, now over forty, but still crying and helpless.
As I read A Difference in the Family my mother is approaching seventy. She is, I suppose, “bent and wrinkled,” and she hobbles up snowy steps to restaurants and museums; up the two impractical flights to her sunny condominium in Cambridge. But she is not hobbling up the stairs to minister to Jody. I am flooded with relief that this, at least, hasn’t come to pass.
I am also filled with her pain.
I return to this passage again and again, stuck on the author’s agony. It is vividly rendered, yes, but also—the author is my mother. I love her, but how well acquainted am I with the things that hurt her?
Children learn early to avoid asking the questions that would reveal something raw and sinewy. When does seeing your parents whole become permissible, or even possible? When you are grown, maybe a parent yourself? When they lose the ability to make their own decisions? When you make the time to read their memoirs?
TWO MONTHS AFTER I HAVE READ A Difference in the Family, my mother arrives in New York to see a doctor. It is the coldest kind of spring day, and so we abandon our plans to take a walk and seek out the sun on the top floor of her friend Jane’s renovated brownstone. She stays with Jane when she visits, not with me: I am not a real grownup (am I?). I am twenty-eight, studying children and families with the aim of becoming a poorly compensated clinician. I have no spare bedroom. Jane is an artist; the spare room serves as her studio. There are paintings and tubes of paint everywhere, and a child’s easel with giant pencils for legs. My mother and I sit facing one another on two folding chairs, the only seats available. There is nothing between us, and the arrangement feels vaguely clinical, therapeutic. The room is warm with the sun, but the wind is deafening. My mother asks me if I ever think about Jody, as if she had suddenly grown clairvoyant.
“Well, actually,” I say, “I just read your book.”
My mother laughs, and her laugh holds both discomfort and comfort at once. She and I are known to one another; this topic is uncharted. “What’d you think?”
“I thought it was really good,” I say, inadequately. And then I say other things; I don’t remember what.
She asks me if I’ve talked to my sisters about Jody and I say, no, I haven’t. I tell her I talked to Caitlin about reading the book, but “I didn’t ask her about feelings.” The last word is meant to sound comically icky—to evoke the tone she used digging through a moldy cheese drawer an hour earlier.
She laughs, and she says, “Me neither. ”
“What do you mean?” I ask. Jody’s life and death were subjects around which I wasn’t comfortable, but they weren’t avoided. The stories were told, the photos were framed, parading along the top of the bureau.
“I haven’t ever talked to them about how they felt about him, and his dying,” she says. The starkness of this is striking.
“Not even when they were pregnant?” I ask.
“No,” she says. “I don’t think so.”
“They must have worried though, then, about their own babies… you never asked them about it?”
“Maybe they didn’t,” she suggests, optimistic but not altogether convinced, or convincing.
“Oh, come on,” I say. “I worry! I’m not even pregnant. And I wasn’t even there.”
“I was so anxious when I was pregnant with Caitlin,” she says. “But not with you.” It gets hotter in the studio, and she tells me that being the parent of a dead child is like being a restored piece of crockery: you can’t see the crack once it’s been fixed, but it isn’t gone, and if you drop the vase it will break again in the same place.
“Did you ever feel relief?”
“No,” my mother says, almost without hesitating. “I mean, maybe now I can see that I wouldn’t have wanted him to be an adult. If he could have stayed the same age, and if we all could have stayed the same…then, maybe…”
“Hard to arrange,” I say. I am shocked. Relief seems to me like a natural response to the death of a child who is so profoundly disabled. I have read the book, but what do I know, after all?
“I don’t think he knew that his life was harder than anyone else’s. But maybe he did. If he did…that would have been different. I wouldn’t have wanted that.”
SCHOLARS WHO TRAFFIC IN DEATH and its ripple effects posit that children who experience loss or knowledge of loss early in life may develop a belief that the outside world is dangerous. But as I attempt amateurishly to turn my professional lens inward what I find is something closer to a dread of the internal: the conviction that pregnancy, birth, and childrearing are potentially dangerous, that bodies and families are potential sites of disaster. There is Jody, of course. A sister’s miscarriage. My maternal grandmother’s own full-term, stillborn child: John, born before my mother. My husband’s childhood friend was killed in a car crash when he was in middle school, but the danger didn’t come from an ice slick, or a semi-truck: her father fell asleep at the wheel. Close relatives struggle with serious mental illnesses. Nothing, not even love, can stop the sharp edges of death and disease from poking through, ripping the fibers.
I cringe at baby showers, at the dubious new custom of the “gender reveal.” Anxiety bubbles up like acid in my throat. Don’t they know that this isn’t a sure thing? I wonder, looking with horror at Facebook photos of couples cutting into thickly frosted cakes: a pink interior for a girl, blue for a boy. Prospective parents grin, and I judge their unguardedness, the naked and naïve quality of their joy.
“They say lightning never strikes the same place twice.” My mother writes this about choosing to have another child after Jody. But this is not true: skyscrapers, I peevishly argue with her text, are often struck over and over.
WE VISITED JODY’S GRAVE a lot when I was a kid. I remember it as a semi-regular, and not unhappy, occurrence: mostly snowy and sludgy and cold, like so much of Boston for so much of the year. But there was one visit that was green and lush and warm, and I remember my revulsion then at the mausoleums—actual houses for dead bodies, which seemed far creepier than the idea of Jody lying under the ground—and how on that visit, my father told me about Mary Baker Eddy, and how she’d had a telephone installed in her tomb in Mount Auburn Cemetery, just down the road. I remember laughing, nervous and incredulous; for years, I thought about that phone every time I visited a cemetery. The story, as it turns out, is apocryphal.
I wonder if the absence of secrecy—photos of Jody on display, outings to the gravesite—created a false sense of integration. My parents were children of the 1940s and 1950s and knew firsthand the unfortunate consequences of withholding information, of burying in shallow graves cancers, addictions, criminal behavior, sexual orientations, illegitimate children, affairs. I understood from an early age that concealment suggested something insidious, unhealthy. The opposite, I thought, must indicate health, wholeness, clarity.
I saw a therapist throughout college whose office was above a Kinko’s and furnished in black leather and chrome—the neon lights outside the window and the sleek shapes within an odd contrast to the messy, fractured clinical work in which we were engaged. It was at least a year—maybe two—before I mentioned Jody. When I did, casually, he was flabbergasted. “How could you not talk about this?” he pressed, almost amused.
“I don’t know,” I said, and I think I laughed, too. “It didn’t seem very important.”
The psychoanalytic phenomenon of “replacement child syndrome” (wherein a child is conceived with the explicit goal of “replacing” a dead sibling, then raised with kid gloves) is no longer referred to as such. Polite contemporary clinicians temper their alarm, emphasizing the coping skills of parents and subsequent offspring, using quotation marks and careful phrasing to distance themselves from assumptions of pathology (“The ‘Replacement Child’: On Adoption, Haunting, and the Unlived Life”; “The Myth of the Replacement Child: Parents’ Stories and Practices After Perinatal Death”). In graduate school I wrote a paper on the subject, and clicked my way through Google Scholar, riding link after link into case study after case study. Within the cheerfully described “coping skills” there didn’t seem to be enough room for the complexity of having (and being) a child born after a devastating loss. There is no control group; I will never be able to parse the impact of Jody’s life and death on my own life, or even upon the parents who raised me. All I have is myself.
Was I healthy, relatively untroubled, gratifying? I would say so. Ten-pound, placid baby Caitlin was a solution of sorts, too: a way to heal my mother’s own damaged sense of herself as a vessel, a robust cure for her feeling of brokenness: “Here at last was the baby I had dreamed of for three years, the baby who grew and fattened, and went at life with gusto,” she writes. But neither I nor Caitlin was ever the healthy son our parents had hoped for. I do not think we were disappointments, nor do I think we could have replaced Jody as he was, or the fantasy of the healthy child that they lost at his birth. The “ghosts in the nursery” are not just ghosts of people but ghosts of hopes, after all. Sometimes such nebulous creatures are squirmy and slippery: tough to grasp, they are difficult to put to rest.
I had turned my mother’s experience over in my mind a thousand times, rubbed it smooth with my preoccupation. But all it yielded were fears about making a family of my own, as well as a vague hunger to understand life marked by disability. I know that Jody was loved, because when my parents speak about him, they speak about him with love. Because one sister has photographs of him in her home, and the other slid the name “Joseph” between the first and last names of her own son. But I don’t yet know how it feels to love someone who is unable to reciprocate love in the way that I conceive of love as being reciprocated. Reading the book I tried to understand: knowing this, I fantasized, would make me a good mother in advance. I would have a head start on relinquishing control.
One woman in whose classroom I worked in graduate school brought her copy of A Difference in the Family, dog-eared, for me to see and hold. She placed it in my hands, and I nodded and listened to her description of the ways it had helped her and her other children make a happier life with her daughter. I was practiced in the art of the empathic face. I conveyed the sense that I understood her and her plight. But I had nothing to give her. I had no experience, really—or rather, no experience that aligned with hers.
AND THEN, JUST LIKE THAT, I am pregnant: on purpose, but rapidly, somehow unexpectedly. It is 2012. I am twenty-nine years old, I have been married just over a year. I am lying on the examination table at a gynecologist’s office for a long overdue pap smear. She pokes at my breasts, checking for lumps.
“That really hurts,” I tell her.
“Oh?” she asks. “Maybe you’re ovulating. Or you could be pregnant.” Her voice is like a shrug, and she finishes the exam and sends me on my way. I walk seven blocks to CVS and buy a single test. I carry it back to the basement bathroom in the library of the school at which I am studying people and pain and coping and other messes, and I pee. And then there it is: the second blue line. Positive. All around me young women flush and wipe and wash and stick their hands into the high-tech hand dryers that cause the skin to ripple and wave. I sit.
And at some point, perhaps in that stall, or in the moments that follow, the fear of illness and disability slinks offstage to lurk in the wings, and a new monster shimmies into the spotlight, ghoulish and commonplace: miscarriage becomes more terrifying than any misfortune that could come after. The wanted baby that might never get to be replaces the specter of the disabled child.
Freshly pregnant, I devour stories of children-that-weren’t as if they might work as prophylactics. The author and editor Martha Bayne writes, in an agonizing essay in The Rumpus, about what happened after she stopped bleeding: “And then, eventually, I stopped crying. And when my grief floated way, I was left with…nothing. ‘Of course you feel “empty,”‘ said the therapist. ‘Something is missing. There was something there, and now it’s gone.’” It is this sudden absence of something still unknown that I begin to dread, and I check my underwear whenever I use the bathroom, looking for telltale spots. What will happen to me if this suggestion—and an early pregnancy is nothing more than potential; it is not a promise—goes unfulfilled? How will I climb out of that disappointment? The journalist Peggy Orenstein, in an essay about grieving for her miscarriage, writes about how her consciousness of the provisional nature of early pregnancy provides cold comfort in the face of loss: “But for me, there is another uncomfortable truth: my own pro-abortion-rights politics defy me…. I tell myself that this wasn’t a person. It wasn’t a child. At the same time, I can’t deny that it was something. How can I mourn what I don’t believe existed?”
Uncomfortable with my own feelings of attachment—I have a powerful hunger for what this embryo will become—as well as my lower back pain and a host of strange smells, I try to understand my own twisted logic. To lose the pregnancy at this stage would be to lose everything that might come after, to be forced to grieve for the unknown. It would, in a way, mirror the grief for a brother I never met. Like Jody, the child that would have been is at once unknown, and unknowable. But of course there is a key difference: the child that was—the child that lived—was knowable. There was someone to know in Jody; it is just that I missed knowing him.
As the weeks tick by and the cells continue to divide, his reality is present to me. I want an actual child, one who will inevitably upend my fantasies about motherhood, which include reading aloud Judy Blume and watching The Great Muppet Caper. I want to cook meals that will be refused, infuriatingly. I want to give bad advice; I want to be dismissed with an eye roll or an exasperated groan. I remind myself that even these imperfect images are fantasies, though they contain the sharp edges of realism; I try to count on nothing.
I begin to see my mother’s grief in a new, bright light. The relief that I imagined his death would bring her slinks offstage, pushed roughly by the desire for sustained life, the desire for this thing to become and remain a person—anyone—whom I can love with some kind of mutuality. Nothing else will be enough.
Within this new worry is something warmer, softer: my fear of Jody and his disability is replaced. In this shift from a threat to something tender, more welcome, I feel closer to Jody than I have ever been. Jody was loved, and he felt love, I am sure.
I TELL ALMOST NO ONE I am pregnant. I make a new friend in graduate school. I see her at orientation on the first day, and she stands out by virtue of looking like somebody I already know. We have lunch. She is Canadian, and she is interested in palliative care. Palliative care and families with terminally ill children, she says. She doesn’t say this as if it is fun and exciting, the way some social work students gleefully announce their grim predilections: Disaster relief! International trauma work! Survivors of childhood sexual abuse! She says it matter-of-factly. This is what she cares about. I squint at her: there is a dead kid in her past; I know it.
She friends me on Facebook and I scroll through her profile, looking for clues. She is predictably discreet, tastefully evasive. But then there it is: a picture of a round baby, cherubic. “Thinking of Henry,” she has written. “Every day, but especially this day.” There are a few of the usual comments: people are thinking of her and her family.
Henry. I can’t tell from the photo, or from any of the social-network-appropriate expressions of condolence, what her relation to Henry might be, or when and why he might have died. He is definitely dead, though: I have become an accomplished tragedy hound.
Many weeks later, we meet for tea on a Saturday, after the library. It’s midafternoon, but already dark; November has just declared its allegiance to winter. She tells me about her week, her vacation with her sister. Her sister, she says, cautiously, has had a hard couple of years.
“Oh?” I say. I know what is coming, and indeed: her sister lost a baby a year ago. The baby lived three months with some rare genetic illness. And then, last week, the sister had a miscarriage. She only just stopped bleeding.
I think of this grief-saturated Canadian woman whom I’ve never met—whom I may well never meet. I think of the maxi pad that absorbs all her hopes. And after that: clean, bloodless, nothing more than underwear. I express my condolences; I hold my mug and keep my eyes on my friend’s eyes. Inside I make frantic calculations, as if I could pick and choose among terrifying outcomes: miscarriage, stillbirth, neonatal death, SIDS, death in childhood, a life altered by disability. But I don’t get to choose. None of us do. I just have to hold my breath.
I HAVE AN OCCASIONAL SIP of beer, of Diet Coke. I perform speculative arithmetic on the cumulative disadvantages of alcohol, nitrates, and other toxins, and I figure that my baby already has a lot of advantages. But I studiously avoid undercooked meat. Once past the first trimester I find it impossible to relax into confidence that this being will make it to the outside world alive and well. I fret about toxoplasmosis relentlessly. The dangers seem to be everywhere—the cat that weaves in and out of my legs outside our apartment building, the ground beef in the refrigerator. Restaurant kitchens, pâté at Christmas.
Then she is here. She is alive, and what’s more, she is well, and arrives with very little emotional fanfare: her birth brings joy, and relief from worry, and, oddly, nothing much more complicated than that.
I do not worry about germs, or the edges of coffee tables. I laugh out loud when I come home to find that the babysitter has surrounded my unsteady six-month-old with a wide plain of cushions, leaving the couches completely bare. One day I watch as a big girl at the playground eagerly pushes my toddler so vigorously that she falls out of the swing. Lola’s lip is cut; she cries. It’s okay, I reassure the big girl, who is guilt-stricken, horrified. She’ll be okay. I take solace in my mathematics. I will control what I can when it comes to the statistically likely dangers: cars, backyard pools. I will leave the rest to chance.
AT TWO AND A HALF Lola’s hair is long enough to put in a ponytail, and her cheeks are losing their baby fat. We move to a leafy neighborhood in West Philadelphia and make friends with a couple who have a child Lola’s age. They are academics and therefore readily Google-able. “They had a baby that died before it was born,” my husband, Gabriel, reports back. He sends me an essay the mother, Lara Cohen, wrote—“Past Griefs”—and I read it, hungry. A scholar of nineteenth-century literature, Lara frames her loss as a relic of that time: “Mourning is inescapably isolating,” she writes, “but this grief alienated me from my entire present. Dead babies belonged to another century.” She writes sensitively about the twin emotional and logistical nightmares of the death of something that never was, a twenty-two-week-old fetus that is more than a “pregnancy” but less than a “baby.”
When the moment comes in our friendship for Lara to tell me that she was pregnant before Louisa, her resolutely round-cheeked, tan daughter with whom my daughter plays and squabbles, I nod. I do not lie, but I do not share that I know this already. I say the right things, inasmuch as one can—by now I am really and truly a social worker, after all—but I do not disclose my furtive consumption of her misery. I tell her that I had an anxious pregnancy.
I fear that the blond preschooler climbing in and out of my lap is a prop that renders my interest unseemly: were I to tell her about reading—and re-reading “Past Griefs”— I would seem like nothing more than a grisly rubbernecker. Lara writes about finding solace in Victorian literature, which is littered with dead children, and of course the irony is not lost on me: I am myself consuming her narrative, getting my fix. A healthy baby didn’t cure me: I am still a voyeur, poring over others’ worst-case scenarios.
But there is more to it than that, I hope. In scavenging the words that describe other people’s heartbreaks, I am accumulating the language of their very concrete grief, the clear losses whose absences filled their days and nights with sorrow. Maybe a tidy collection of all these carefully described traumas will give me something to hold on to, a window into the loss endured by my own family two short years before my birth. They lost a child, a brother. His limbs had precise curves, and his hair had a specific color. This is what I know about him: he laughed. He liked music and the audio of domestic chaos. They knew—and know—so many other things about him, too many to name.
Lara, like Orenstein, struggles with the nebulousness of her loss, but its shape seems clear enough to me. No one would begrudge her the grief she feels for her son-who-wasn’t. What kind of grief do I have? I have a family who lost Jody, first the idea of him that disease stole away, and later the very real boy. I have all the ways in which losing him made them the parents and sisters I know. And I have a brother who was never mine. In Jane: A Murder, Maggie Nelson writes about the aunt who was killed four years before her own birth:
When I tell my grandfather
I am writing about Jane, he says,
What will it be, a figment
of your imagination?
I have my own figment, and my family has their grief, as real as Nelson’s grandfather’s angry grief. My nose is pressed up against the glass, looking in. The orange-hued photos of all of them with their strange 1970s hair, their endless ensembles of corduroy and velour do not include me. I never knew that decade, the full ten years that they lived together as a family, swimming in love and devastation and exhaustion and play and the ceaseless mundane labor of life with many small children, one of whom could not walk or talk or feed himself. They are not waiting for me in these photos; they are camping, of all things! They never once camped in my lifetime. But the photos can only tell me so much. I cannot see the weight of the camping equipment, the mosquitoes, or the texture of the pink balloon I thought was a bubble. I cannot see the unmeasurable weight of death, and the uncountable ripples of mourning.
I think of my mother leaving her grief for a healthy Jody between covers for anyone to read, but never once asking my sisters about their own experiences of pregnancy and motherhood in the aftershocks of Jody’s life and death. There are always things that get in the way of people touching one another: clothes, walls, decorum, fear, ink, words.
AND THEN MY PRESCHOOLER is four years old, blowing out candles on a cake she helped to make, and I am pregnant again. We are settled in a grandly dilapidated Victorian house, no doubt with its own history of pain and loss. Did the worry work as a talisman last time? Is it folly to try for another child when the first one came out so well, so robust and chatty?
But I want a backup. Every so often a horrible image arrives, uninvited, of something too terrible to name. And then where would I be? I wonder. The answer is grim: I would be childless, still a mother, but with no object of care. So I will make another one, another whose love will consume me with its sheer physicality, the nearly romantic desire I feel for its skin, its little arms and legs and hands and toes and ears, who will enrage and enchant me by turns.
In the daylight, Lola, her freckled face so very real and solid under my thumbs, is an antidote to worry. “We’ll save this for my baby brother,” she announces, handing me an outgrown sweatshirt, a pair of torn tights, a dull toy.
I give in: together we go through Lola’s baby clothes early in my second trimester. I price strollers and arrange to paint the study, transforming it into a nursery over the course of weekends.
“What if my baby brother messes up my sandcastles?” Lola worries at the beach, trampling over any remaining caginess. We discuss where he will sleep. We change together in the bathroom and she taps my protruding stomach and says, with the confidence of a four-year-old, “That’s where my baby brother fetus is.”
I wince, but I do not say to her, He is not a sure thing. I can-not bring myself to introduce the idea of death or illness into her anticipation.
One night, Gabriel and I leave a sleeping Lola at my parents’ house and go out for dinner at a restaurant that we cannot strictly afford. It is on the water in a cushy residential neighborhood—many of the diners have boated up to the dock for dinner—and the atmosphere is one of casual wealth. I read the menu and eliminate one item after another: oysters, tuna tartare, blue cheese from a local farm. We settle on a shared salad, free of dangers, and a pasta and steak. We ask for the steak to be cooked medium, rather than medium-rare, as it is usually prepared. The beautiful waitress nods, but what is placed in front of us is purplish-red, like the edges of a wound. We do not send it back, for reasons unknown. I eat the pasta, and Gabriel tracks down a small piece of steak that is more pink than red. It is, of course, delicious. I eat it, not without fear. Why? Why risk it? In order to feel human; in order to remind myself that the risks are small; in order to enjoy the $35 cut of meat. In order to tell Fate, Fuck you. There is an aspirational quality to the whole experience. I aspire to shoo away the specter of poison, of disease. I aspire to waterfront real estate.
I return to Philadelphia. I fret. I Google. I feel some of the old certainty that something within me will poison this child, that I contain the seeds of my own destruction. I replay the meal again and again: I practice sending the dish back, making myself heard to the server over the little waves, the hushed and decorous clatter.
At my next prenatal appointment, I duly pee into a cup and hand over my arm so that it can be wrapped in the blood pressure cuff. I stand on a scale, noting the way the numbers have inched up in four weeks. I wait in a quiet, windowless room for my midwife, who is tall and loud and matter-of-fact, immaculately upbeat.
“In addition to the important gaps in their understanding and information,” my mother writes in the chapter titled “Brothers and Sisters,” “children lack a first-hand source of information. Parents take their handicapped children to doctors, teachers, and therapists. These experts form opinions and answer some questions. Able-bodied children, even if they accompany [their families] on such visits, rarely ask questions of their own. They make what sense they can of overheard conversation and rely on their mothers and fathers for basic information.” I am an adult now. Tackling the worry that has wormed its way into me is my responsibility. Sitting on the vinyl chair next to the midwife’s desk, her computer a confession screen between us, I unload the sin of the steak. And I tell her about Jody.
“That’s what we’re testing you for, every time you pee! T. gondii!” She is thrilled by her ability to address my exact concern. “Now we have treatments,” she tells me, her round face lit up, her curls bouncing. “Or we would induce sooner! It wouldn’t be like your mother’s experience at all.”
To say that the fear falls away sounds pat. What can I say, then? It slips into the sea with the finality of the winter seals near my parents’ house rolling off the rocks into the waves.
But Gabriel has been around me long enough to absorb some of my fear. It turns out fear is not a seal; like bad news in the paper, it smudges his fingers. A neighbor’s cat, Sadie, likes to come sit on our porch. She likes a lap, and once she has made herself comfortable in the folds of your clothing she begins to drool. My husband shoos Sadie away from me throughout my pregnancy. “Children are almost bound to incubate a few alarming fantasies before their developing understanding brings the truth within reach or a helpful adult clarifies the matter,” my mother writes, reassuringly. The chapter does not address adult children who nurture their alarming fantasies well into their fourth decade. She does not address the nightmares of their partners. I shrug. I will wash my hands inside, if I remember. I have done what I can.
“A CHILD WHO CANNOT COMMUNICATE is still very much a person,” writes my mother.
But he is a person whose ideas, experiences, and feelings remain largely out of sight, inaccessible to others. He fails to give us many of the rewards we expect from other people…. [Jody] does not change in the same way his sisters do. He does not startle me with his idiosyncratic vision of the world—although his world, if I could look into it, would undoubtedly surprise me at least as much as theirs. He does not challenge my ideas, or point out my shortcomings, or comment on my friends and relations. Nearly everything I believe about his world I have projected from mine. Because he is unable to tell us about his world, each of us in the family constructs our own vision of it. We spin it, like spiders, from our own insides.
By now I have memorized the clinical language of grief: “ambiguous loss” is always at the ready, a useful shorthand for all kinds of miseries: incarceration, abandonment, the hole dug by debilitating illness. For me, Jody’s death is an ambiguous loss, certainly. But even to others—those for whom he was a brother, son, nephew, or cousin, whose death created real, tangible grief—his presence was not uncomplicated. I know this, too: grief, a natural reaction to loss, is never resolved. The experience of loss is assimilated into the person’s reality as they reconstruct a shattered sense of the world, a shattered sense of self.
I am seven years old and it is June. The afternoon is warm, and my father tells me, as if he has just remembered, that today is Jody’s birthday. I am old enough to be familiar with our family’s rituals of celebration: birthdays call for restaurants, or at least elevated dinners at home. They call for cleaning yourself up, they call for cake. I know, somehow, that we won’t go out, and that there won’t be cake after dinner, and yet something prompts me to change into a skirt before I come downstairs to set the table. It is a favorite, a tiered, cornflower blue hand-me-down. My parents both notice the skirt. “You changed!” my mother says, surprised and pleased. I am embarrassed.
In that moment, did I wish that I had worn my dingy cutoffs? I think so. It all felt too sad, maybe, or too happy, as if I were inserting myself where I did not belong. I think even at seven I had a sense of the possibility of dramatizing his death in opportunistic ways. What if I was using his birthday as a shameless opportunity to feel more like Laura in Little House on the Prairie?
But I am now myself the parent of a child who, like most children, is alternately compassionate and solipsistic, and I am grateful to my small self and her decision to mark the occasion with a beloved skirt. That girl was putting together a self, one whose brother died before her birth. I was trying things on for size. I still am. The scholars of these messy human affairs would have you believe that things are either bad or good, unresolved or integrated. But in reality the hole left by death is there, no matter what you do. You can stuff it with beautiful mementos or rotting debris; it’s still a hole.
AT THE SCHOOL IN WHICH I WORK, one of my tasks is to run grief groups for children who have lost a sibling or a parent or someone else hideously central. The groups are for children whose losses are huge, life-changing: the occasional deceased grandparent or cousin is permitted, but a great-aunt is not allowed. The lists of names would be too long. We would not be able to squeeze the children and their grief into the small room in which we meet to read stories, color, play games, listen to music, eat candy—all of the imperfect coping mechanisms of childhood.
My cofacilitator, a grief counselor from a local non-profit, is named Melissa. We begin each session with an icebreaker, and the children toss a ball and say their name and who died, along with maybe their least favorite vegetable, their favorite movie, the best thing at an amusement park, or the musician they would most want to see in concert. Every week, Melissa leads off. “My name is Ms. Novak, and my mom died. My favorite food is pizza.” She is cheerful and compassionate. Her hair is carefully styled, the loss of her mother massive, grave enough for the children to look at her and imagine that they too can grow up to become a kind woman whose makeup is in place, and whose large, monogrammed bag is full of supplies for making sense of tragedy.
“My name is Ms. Featherstone,” I always say, and then I toss the ball away from my chest. The children have lost fathers—so, so many fathers. They have lost siblings, babies who never left the neon lights of the hospital for beribboned basinets and clattering jumperoos. The kids wear their losses like tattoos. They fly into rages, flip desks. They cry noiselessly in math class. Their shoulders slump with the weight of carrying someone’s memory.
Some people write books to contain their grief; my mother did. Melissa draws Grief Pie on paper plates with scented markers; she cycles through schools, eight weeks at a time, offering what she has to those hungry for it. After all these years, I still feel as if the grief I hold has no clear shape. Whose brother died? Whose sister am I?
The annual grief group starts up again the autumn that I am pregnant for the second time. Lola will have a brother. Maybe it is beginning to dawn on me how much they will mean to one another; I am giving her a gift that cannot be exchanged or returned, one that will certainly cause joy and pain. Maybe it finally dawns on me that someone died.
“I am Ms. Featherstone,” I say, after an eighth-grader tosses me the ball. She looks at me: waiting, sympathetic. “My brother died. I don’t like peas."
