What The Living Do
By Emily Rapp
“Is this your first baby?” Any woman who is visibly pregnant has likely been asked this question by strangers in the grocery store line, other expecting women at the doctor’s office, random passersby in the street.
Pregnant women are often asked deeply personal questions in public: if this is our first child; how far along in our pregnancies we are; if we’re having a boy or a girl; if we have a name picked out. However indelicate these questions might seem, to some degree they make sense. Pregnant bodies are a visible symbol of life andgrowth. People like to engage with women who are expecting to give birth to another human being, which is itself a way of altering the progress of time, of literally changing the world by bringing into it a new life and new possibilities.
When I was pregnant with my first child, I loved answering these questions. As a woman with an artificial leg, I have had a problematic relationship with my body for most of my life, and was accustomed to fielding questions like “what happened to you?” I was well acquainted with our culture’s prurient interest in bodies that are considered “different” or “strange” or “wrong.” When I was pregnant with my son, I felt that my body was doing something right and good in the world; “what happened to me” was no longer an incident of limb loss that required an in-depth explanation. Instead, I was about to be amother. I finally felt normal.
I am pregnant now with my second child and how to fieldthese questions from strangers has become much more complicated since the birth, and then the death, of my first child. My son Ronan died of Tay-Sachs disease in February of 2013 when he was nearly three years old. Tay-Sachs is an always fatal, rare genetic condition that robbed him of all his physical faculties—hearing, sight, movement, and eventually the ability to swallow and process food. Ronan was diagnosed at nine months old, when he was happy and smiling and seemed “normal,” yet he had failed to meet any of his developmental milestones. Some of my most heartbreaking memories are trips to the doctor’s office where a nurse took his pulse with a tiny finger thermometer as he giggled and baby-flirted with her. Many times I watched that nurse’s eyes fill with tears, because here was a doomed child, a sweet baby with red-gold hair and long, pale eyelashes and chubby wrists and ankles who would not live to be a toddler, and whose life would unravel in a devastating way. It is terrible to look at your child and think he will suffer and then he will die.
“How old is he?” people would ask me when I walked Ronan in his stroller on the walking path near my house in Santa Fe before he began to physically manifest the signs of his decline. When I told them they might say, “Oh, it goes so fast,” or “You’ve got so much to look forward to,” and “he’ll be walking and talking soon,” and I would wheel Ronan home, weeping and furious with a horrible raging sadness about the wrenching and ridiculous unfairness of the situation. Sometimes I told the truth. I’d say that he was dying, that he would never talk or walk, and brace myself for the response, if only because I wasn’t ashamed of my son and didn’t want to act as if I were hiding anything. This didn’t matter to Ronan—his cognitive abilities were stalled at a six-month-level before they deteriorated—but it mattered to me. At home I would pluck him from the stroller and hold him and cry and wonder why this was happening to me, how it could possibly be happening to such a sweet and innocent boy. The whole order of the world was reversed—babies dying while the parents lived on.
Losing a child is every parent’s worst nightmare, but to be entirely helpless as an unstoppable, incurable disease takes a child from you, to be told by a doctor “this child will die,” and then to witness the slow fade of personality and then the body, is a situation that on many days I did not think I would—or wanted to—survive. And yet I did.
My desire to have another child emerged just after Ronan was diagnosed. I wanted to plan for another baby right away. My husband, my supportive parents, many well-meaning friends all questioned this course of action. My therapist, too, cautioned me about having another baby. She warned me about the dangers of having a “replacement child.” I found and still find the idea of a replacement child odious and horrifying although it is a documented term. No child is replaceable. A child is not a couch or a job or a great spot for your next vacation. I was 36 when Ronan was diagnosed. I did not have the resources for the complex fertility treatments that my husband and I would have needed to pursue to make sure that our next child was not affected with Tay-Sachs (both parents must be carriers for Tay-Sachs to manifest, andthere’s a 1 in 4 chance that a child will have the disease when this is the case). When I met with the fertility doctor he cautioned me that the next two years were crucial if I wanted to have another baby. The literature I read online and in magazines assured me that it would soon be too late for me to get pregnant. I was facing the combined loss of my child and my newly formed maternal identity—the future seemed to me a skeletal, miserable existence, a shattered and frightening world.
The only people who encouraged me to have another child in short course were the mothers of other children with Tay-Sachs disease, who understood perfectly. Of course you want to feel life again, one mother told me. I began to argue with my therapist that clinical terms like “radical acceptance” of my difficult situation and “replacement child” were entirely divorced from real-life situations. I wanted another child, in part, to anchor me to the world, to the after life of living without my son, butI never thought a new child wouldreplace him. I would have to live through what happened to him, but did I ever have to fully accept it? What would that look like? Of course these were questions that nobody could or ever will answer.
Although my relationship with Ronan’s father did not continue, we parented and cared for our child until his death. When I look back on those two-and-a-half years of Ronan’s care—the seizures and suction machines and medications and finally, a feeding tube through his nose, it seems thunderous and unimaginable. And yet my imagination conjures up these images with ease and I remember and mourn him all over again. Ronan’s absence in my life is present to me—with varying degrees of force and sadness—every day, and this will be true for the rest of my life. The memory of what was lost becomes its own reality and then lingers. This is true of the leg I lost and it is true of anything precious that is taken from us, any loss that changes our lives on such an epic scale. I don’t believe that people “recover” from loss; we can only hope to absorb it in a way that still allows for daily moments of happiness. Even this is sometimes a struggle, but it is one worth engaging in. We press on. We continue to seek life and love and meaningful experiences. Otherwise, what are we doing?
I met Kent, my current partner, aftermy husband and I had already separated and decided to divorce, putting an end (I assumed) to my hopes of having another baby. At this time, Ronan was still alive but entering his period of greatest and most rapid decline. When it became clear to Kent and me that our relationship was one that we wanted to pursue for the long-term, we immediately talked about having a child together. Both of us were older (I was 38 and he was 58) and we both wanted to be parents, me for the second time and him for the first. I got pregnant four months after Ronan died, in the midst of deep grief but also fully supported and loved by a partner.
* * *
I took the first pregnancy test before dawn. When the stick read “pregnant,” I was gripped by euphoria, fear, guilt and surprise, all at once. I ran into the bedroom and woke Kent up to show him the results. All of the competing emotions rushed in: the impossible desire to hold my son again, in real time, with my own hands, to smell his hair and kiss his face and touch his skin; and the great hope that this microscopic, newly formed child in my body would live on, first in the womb, and then in the world. This child would replace nobody, I realized. Ronan existed, and this child would exist. Yet I still wondered: could I find full joy in this new baby when his or her half-brother had died?
A few days later I didn’t think I’d need to worry about it. My first ultrasound at six weeks showed a gestational sac with nothing inside: no heartbeat, no fetal pole, no signs of the beginning of viable life.
“Well, it’s a no-go,” the doctor said, asif I had planned a party that had suddenly been cancelled. “Probably a blighted ovum.” My friend, Elizabeth, who had come with me since Kent was out of town for work, switched off the video she’d been taking to show him the next day.
I blinked at the fuzzy screen, the great space waiting to be filled. Ronan had been driven away from my house in the funeral home van only four months earlier. I would never see him again. This baby had disappeared—but where? The doctor snapped off his gloves and began to make quick marks in my chart. “I see from your chart that your son has Tay-Sachs disease,” he said.
“He did,” I said, still on the table, undressed from the waist down and wearing the flimsy cloth robe. “He died.”
He looked up. “You must be Jewish,” he said.
“I’m not,” I said. The room was cold. My legs were cold. “People think Tay-Sachs is a Jewish disease, but it isn’t.”
“It is,” he said.
“You must be Jewish,” he repeated. Ilooked at him and repeated that I was not.
Elizabeth, sensing my agitation and increasingly annoyed, said, “Well, I’m Jewish, but I don’t think you can catch it from over here.” The doctor flushed red, said no more, and left the room. I never saw him again.
The next week I went to a different doctor, who found a strong heartbeat—a vigorous rapid thumping—and a baby forming just where it should be. Kent was with me, and when we saw the tiny form on the screen, we cried. Out of relief, disbelief, fear, happiness, and the idea of these feelings occurring simultaneously.
The pregnancy progressed smoothly, as my first pregnancy had. When I began to show and people began asking me if I was pregnant with my first child, I was determined to remember Ronan in my response, no matter how uncomfortable it made the asker. “No,” I replied. “I had a son and he died.” The conversation often stopped here, the narrative halted. When the questions first began I scrambled to make the awkward exchange a bit easier for the other person. “Sorry to throw that on you,” I’d say, smiling. But now I don’t. My new policy is: asked and answered. Or, as a relative of mine used to say, if you don’t want the answer, don’t ask the question. I don’t elaborate on how or why my first child died when some people go on to ask those questions (and they occasionally do); at that point I tell them that I prefer not to say any more. I don’t want to offer up the details of Ronan’s illness like the pieces of a tragic tale. But I want it to be known—to strangers, to everyone—that he was in the world, that he was fully loved, and that he was my first baby.
I believe that the real danger of having a child in the wake of child loss is the idea that the child who came first and was unconditionally loved will be entirely forgotten. This was an idea I could not and cannot bear. Ronan was singular even after his death. His half-sister will be singular as well, just as loved, just as irreplaceable. She is filling no space; she is creating her own, just as Ronan did, just as every child does. No person’s place is taken by another’s presence. I don’t believe a desire to have another child is a way of healing wounds, or a way of mitigating the great sadness of losing a child. This great joy and sadness can coexist, and in fact they must. This is the responsibility those of us who have lost children have to our living children: to remember. To make known to those we love and live with that each life has a precious place in the world and a significant purpose, no matter how short that life is or might have been.
These are uncomfortable thoughts for all of us, especially parents, because it is so painful to imagine the death of our children; we’d rather not think about it. In general we attempt to avoid thinking about death in this culture, and we pass this culturally sanctioned phobia on to our children. We think they can’t handle it, don’t know about it, but they do. They sense it. They’re humans. They know. It is our job to find an acceptable way to tell them; to make them understand the existence of death and life together. Years before I had Ronan, I met a woman who had framed her stillborn boy’s footprints and hung them on the wall between her bedroom and her living daughter’s. I thought that was just right; I thought that made sense. Death isn’t morbid or unseemly.It’s the inevitable end of any life.
To not discuss Ronan with my daughter, as I will one day,is to devalue both of them in some crucial and profound way. That said, it is not an easy story to tell someone. “Mom had a baby with another man before you were born, and that baby died.” I can see her, years later as a writer, trying to tell that story in a novel, in a poem, in some other book. To whom do these stories belong, and who is in charge of their safekeeping? This is not mine to decide. I can only tell my own truth.
What the living must do is remember.
Author’s Note: Writing about our children is a strange and necessary task as writers who are also mothers. When my son was sick and actively dying, I felt it was my duty to document his life in a meaningful way. I couldn’t save him, but I could save his story. After his death, I am still in the process of trying to make meaning from a situation that felt absent of all meaningfulness. Writing this piece invited me to consider again the strange ways in which chaos works, turning us toward joy and despair, and many times in unequal amounts. This idea of chance, luck, karma, however you name it, is one with which I have long been fascinated, and writing this reignited in me that intellectual interest.
Emily Rapp is the author of Poster Child: A Memoir and The Still Point of the Turning World, which was a New York Times bestseller. Her work has appeared in the New York Times, the Wall Street Journal, Redbook, O the Oprah Magazine, Salon, Slate, and many other publications. She is a regular contributor to the Boston Globe. She lives with her family in New Mexico.
Illustration by Mikela Provost