Paulette Kamenecka | Longreads | November 2017 | 13 minutes (3,271 words)

In the early months of my pregnancy, when practical concerns still floated out on a distant horizon, Matt and I talked endlessly about our first official parental duty: Selecting baby names. We understood that whatever name we chose would plant a flag in the soil of our daughter’s life, binding her to a set of associations that would follow her around for the rest of her days. Matt, Matt, the big fat rat, and Paulette Portolette would strive to choose a name that would be nearly impervious to ridicule and would guarantee our child was well liked by her friends.

We tried family names, like Royal, after Matt’s beloved grandfather and Sophie, after my grandmother. We toyed with Summer or Alabama because they seemed cool. Walking around our apartment, we repeated our favorite names, one after the other, to hear what they sounded like coming out of our mouths. Part of what I enjoyed about this game was that it allowed us to jump past the pregnancy to some point in the future when we were already a family of three.

But just after the six-month mark, things went south. We learned the baby girl I was carrying had a rare, life-threatening heart condition, and suddenly our attention jerked sharply from issues of social ease to survival.

* * *

After we learned about our baby’s condition, I worked hard to shut out all thoughts about what life would be like with a baby. When this pregnancy was over, we might not have a baby.

In our compromised state I avoided any topic that implied a future. Even after I’d had a couple of months to process the diagnosis, each new detail became a weight that got heavier with time. Because the nerve that set her heart rate had been destroyed, our doctors didn’t understand why her heart was beating at all. They expressed their uncertainty by repeatedly predicting her imminent death.

I spent a fair amount of time in my own mind, the last refuge of the truly desperate. I became superstitious, and worried that picking a name might tip the delicate balance between getting to cuddle a dew-scented newborn and facing a nearly full-term stillbirth, the image of which would be burned into my memory for all time.

One night on a slow walk home from dinner, under the canopy of bare branches that hung over our street, Matt suggested the name Grace, saying it meant undeserved mercy. To me mercy implied a sort of compassion bestowed upon someone who was struggling. The name Grace accurately described how we’d come to think of the baby’s continued endurance. Although I’d imagined that our future daughter’s name would honor a relative from one of our family lines, now it made more sense for her name to honor her own short time in the womb.

Wading into an actual name prompted me to consider other practical issues we might get to address, like the skills required to tend to a baby. I hadn’t changed a diaper since I was 9 and that attempt, as I recalled, ended with a naked baby crawling away from me. I’d never bathed a baby and knew even less about swaddling. I had a sense that Matt was equally inexperienced. I thought it might be a good idea for us to attend the parenting class offered by the hospital.

After six months we learned the baby girl I was carrying had a rare, life-threatening heart condition.

At my appointment with Dr. Gonzalez, the fetal cardiologist, I soft-shoed around the parenting class issue.

“I saw a flyer in the hospital advertising a parenting class,” I said. “Do you know anything about it? I was thinking that maybe Matt and I should attend something like that to get ready for the baby.”

“No,” she said. “Don’t go to that class. Trust me, it’s not for you.”

Shut down so decisively, I didn’t press the issue. I already felt as if I was treading in uncomfortable territory. We might not even need to know the kinds of things that new parents needed to know. Maybe being shown the ins and outs of bathing or feeding an infant would make things worse.

But as the day of the class drew near I had second thoughts. Since I hadn’t pushed the doctor for a reason, I didn’t really know why she thought the class wouldn’t suit us. I reasoned that I would surely engage in some form of preparation for any other job I would take. Why wouldn’t I prepare for attending to a baby? Dr. Gonzalez had probably overestimated our competence when it came to managing a newborn. My ability to hold back tears at our weekly appointments may have left her with an impression of an effectiveness on my part that didn’t translate neatly to other areas of my life. But almost any tips would be useful to two people with so little experience.

Looking back I can see that I’d talked myself into going to this class because I craved normalcy. Everything I’d read or seen about pregnancy described it as this benevolent transformation in which the mother discovered new aspects of herself, new powers even. In the place of any new powers, all I had was overwhelming anxiety.

I imagined that pretending to be normal for a day — attending a class that one might encounter in the course of a routine pregnancy — would allow me to feel normal. I imagined it as a break from the stress of our actual pregnancy. Our attendance would also allow me to entertain the hope that in a month or so I’d be someone who would require this kind of training. Maybe I was reading this fate thing all wrong. Maybe my job wasn’t to carefully tiptoe around our desperate desire to save this baby. Maybe I was supposed to shout it from the roof of the tallest building.

* * *

At the hospital we followed posted signs that led to the Parents-to-Be class. Matt pushed open the door to a room that was set up like a classroom. A big white board commanded the attention of chairs equipped with their own wrap around desks. It was the kind of furniture a pregnant woman had to shimmy into strategically. The robust-seeming pairs of parents-to-be that had already arrived sat next to each other whispering under the hum of fluorescent lights.

Aside from us, there were nine other couples and a very pregnant girl, who couldn’t have been older than 17, on her own. Each participant, save the teenager, looked to be about our age. They were invariably nicely dressed. Most of the men wore some version of khakis and a collared shirt. Most of the women wore sweater sets with ballet slippers and projected that telltale glow of pregnancy.

I became superstitious, and worried that picking a name might tip the delicate balance between getting to cuddle a dew-scented newborn and facing a nearly full-term stillbirth.

The class opened with a video featuring a woman in active labor, sweating and screaming through the birth of her baby. I’d seen a birth movie before and watching it a second time I was reminded that while, as a whole, birth inspired awe, in its particulars it had a sci-fi feel to it. Growing another person inside my body, whom I would later release into the world, seemed like a marginally believable plot authored by someone who wouldn’t be forced to physically experience it firsthand.

After this video, I thought, that’s probably when the useful hands-on part of the class kicks in.

But the hands-on part was not next on the menu. After the movie, we pushed aside the chairs in the room to make space for a more intimate arrangement of couples on the floor. This required the very pregnant women, myself included, to awkwardly get ourselves down on the ground next to our significant others. The group was encouraged to sit in a circle like the school children we all imagined we’d have someday. The next item on the class agenda was “sharing” time.

“This trip that you all decided to take, to start a family, is wondrous and challenging,” intoned the teacher. “It’s completely normal to have concerns about what lies ahead. And likely you will find that you and your neighbor here share a lot of the same feelings,” she added, looking around the circle of couples, tracing it out in the air with her outstretched hand. This was the starting bell for a group discussion about the concerns each couple might have about entering parenthood.

I couldn’t draw a straight line connecting my prior ideas about what this class would offer to the trajectory we seemed to be on. The suggestion that the couples in this group would share our concerns now seemed preposterous. I’d imagined this class only in terms of its informational content, as if it were some kind of job training. This path we seemed to be on was confusing to me. I held out hope, though, that the teacher still had time to whip out a doll and show us how to swaddle it, or feed it or change it.

I had an inkling of foreboding as we were all settling in on the floor. I realized that when Dr. Gonzalez discouraged me from coming to this class, it didn’t sound like she thought the class was poorly organized or lacked educational value. It was obviously something else.

I didn’t have to wait long for my sense of unease to take a more defined shape. The first speaker, a woman with long dark hair, looked shyly around the circle, and quietly voiced a worry she and her partner shared. “We are not sure if the baby will be a boy or a girl,” she said. “But, we are excited and nervous to find out.” Other members of the group shook their heads in agreement. The woman sitting next to us took her partner’s hand and gave him a knowing look.

Next a man sitting in a stiff cross-legged position, knees up high, introduced himself and admitted, “We know that we’re having a girl. But I’m from a family of boys, and I wonder if I’ll know how to be a father to a girl.” This concern was received by the group with vocal affirmation and head nodding from some of the men in the circle.

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Although these were completely legitimate concerns, I could feel a sob working its way up my chest. This was what normal people worried about? I’d been estranged from any sense of normalcy for long enough that I couldn’t remember what it felt like to think about the more abstract issues of parenting. The thoughts and feelings that come with a conventional pregnancy had vanished instantly when we got the diagnosis — like waking from a vivid dream and immediately losing its thread. I leaned into Matt and through clenched teeth whispered, “Maybe we should go.” He squeezed my hand tightly and cocked his head to listen to the next speaker.

As we continued working our way around the circle one member from each couple brought up an issue they had carried with them to this class.

“We’re having a boy. Can we paint his nursery yellow, or is that still a girl’s color?”

“We don’t want to hurt any of the grandparents’ feelings. Should we name our baby after my father, or after my husband’s father?”

The emotional distance that separated us from these future parents grew with each contribution.

But our turn was coming.

I’d never bathed a baby and knew even less about swaddling. I had a sense that Matt was equally inexperienced. I thought it might be a good idea for us to attend the parenting class offered by the hospital.

The pregnant teen was two couples away from us and she was speaking. She had long chestnut hair, and unlike the rest of the group, was wearing jeans and a T-shirt, all of which made her seem even younger. In a strong, steady voice she said, “I’m worried that the father of this baby won’t be around and I’ll have to raise this baby by myself.” Her fear was launched, and met with a profound silence. No one in the group had shared a concern that was quite so serious and in need of advice. With her contribution, the single, very pregnant teenager paralyzed the entire class. No one said anything, or even moved.

Maybe she forced the other couples in this circle to reflect on the strength of their own relationships. Or maybe her candor forced everyone to think about the pregnancy concerns they were not willing to share with a group of strangers. Either way, I felt for this girl. Like us, she was not of this group. In lieu of offering any useful insights, we all sat awkwardly looking around the room or at the floor. When it became obvious that no one would leap into the silence with a suggestion the teacher offered the teen a private discussion after class, which she accepted.

This seemingly successful exchange had just enough momentum to start the circle up again. Another member of the class stepped in to offer one more fairly bland concern that the others had in common. Our turn was fast approaching. Matt leaned over and whispered in my ear, “When it gets to us, you should yell, ‘The fucking heart! The baby’s fucking heart isn’t working!’” I laughed despite myself and looked at him as you would at an unruly child. My heart was pounding.

If I hadn’t felt my composure was held together with tape and gum, I would’ve offered a substantive issue — at the very least to cast a line to the teenager. Some version of me was burning to say that we’d lived the past two months praying that our baby wouldn’t die before she was born. We were hoping with everything we had that she didn’t die during or just after her birth. Because her life-threatening heart problem was created by my immune system, I felt inordinately responsible for her. If my body killed her while she was still in the process of becoming, there was a real chance I would completely unravel — unable to separate myself from my subversive chemistry. One of the concerns I brought to this class, and everywhere else I went, was that we’d never become parents. Few things seemed certain to me at that point, with the noted exception that her death would drown my will to ever risk getting pregnant again.

But I’d buried this version of myself. Saying these thoughts out loud would bring them to life in a way they weren’t yet. I wanted to leave them safely folded up in a corner of my brain.

I also knew that honesty would lead to sobbing. I’d learned that I couldn’t afford to cry in public. My distress prompted sympathy, or worse, comforting. In the few instances in which I’d leaked any information about the pregnancy to someone outside my circle, the listener invariably said some version of, “I bet it will all work out.” Despite the good intentions, this suggestion was so at odds with the facts that I could only understand these words as an attempt to placate my massive fear, like trying to put out a conflagration with a baby wipe. It made me want to tear out my hair.

Beyond saving myself, I couldn’t be honest because it seemed cruel. Sharing anything about our pregnancy was sure to scare the crap out of the healthy parents-to-be. We were the living embodiment of their worst fear; something significant was already wrong with our baby. It was one thing for Matt and me to look over the hedge at them, and another still for them to see us.

Doing my best to contain the sob now lodged in my throat, when it was our turn, I punted. I said, “We don’t have any specific worries. We’re just excited to have a baby.” The contrast between what I looked like and what I felt qualified, in my mind, as Academy Award winning stuff. I turned my head to the fair-haired woman on my right, signaling it was her turn to speak. My neighbor hesitated to take the floor, waiting to see if I couldn’t find something, anything at all, to share with my peers in the class. But I held firm. Saying nothing was absolutely the best I could offer this group.

Superficially we looked the same: a bunch of youngish pregnant couples sitting on the floor of this classroom. But in a few weeks the differences between us could be dramatic. The other couples would give birth to boys and girls, Ians and Julies, babies they would take home to fill Moses baskets and bassinets, babies that would be fawned over by newly minted grandmothers and grandfathers. We’d give birth too — to a Grace — but there was a very good chance that we’d leave the hospital with an empty car seat and a giant hole in our lives. Our world and theirs might never intersect.

The distance we’d traveled away from an ordinary experience of pregnancy wasn’t apparent to me in my everyday life. I’d been sequestered with the other struggling pregnant women at the fetal cardiology and high risk practices for almost two months.

Waiting on the outcome of this pregnancy had changed me enough that I couldn’t conjure even the smallest sliver of normalcy. I was completely shaken by this realization. The distance we’d traveled away from an ordinary experience of pregnancy wasn’t apparent to me in my everyday life. I’d been sequestered with the other struggling pregnant women at the fetal cardiology and high risk practices for almost two months. I used all my energy in these emotional spaces to keep the loud, pained sobs from forcing their way out of my body. This was my normal. I was so focused on stringing together my waking hours, and then each day, day after day, that I hadn’t spent much time thinking about what could’ve been and what we’d already lost.

But sitting for a while with alternative versions of ourselves — confident pregnant parents, something we would never be — was crushing, like the loss of something so ordinary, so expected, it never occurred to me that I could lose it.

After the class I understood that we were on a different trajectory than those healthy couples. The hopefulness inherent in making plans for a baby’s future — her name and the particulars of her room, her imagined preschool classroom — had drifted off, dissipated in the distress that enveloped me, leaving me to focus on what was important now: Survival. We never went back.

* * *

Grace’s heart was still beating at 34 weeks, and at 36 weeks.

Once we confirmed that her lungs were “mature enough,” a C-section was undertaken at 37 weeks.

Two days after she was born, as a six-pound neonate, she underwent open-heart surgery. Today, she is 15.

* * *

Back then, I’d assumed that we’d never be like those other parents in the class. A decade-and-a-half later, I see it all quite differently.

Over the years I’ve come to understand that those days, under the influence of my fears, my view of “us” and “them” had been too simple. With a baby who had heart issues, we flickered between a world of our own and what I could only assume was their world.

Back then, I’d assumed that we’d never be like those other parents in the class. Fifteen years later, I see it all quite differently.

In some ways we never will be like those parents. Unlike them, for our daughter’s health, we will forever be dependent on the latest advances in cardiac medicine. We have boundless gratitude for all those we have already exhausted, and wait with baited breath for breakthroughs in organ development and nerve regeneration.

In some ways, though, we’ve become just like those other parents. We struggled under the tyranny of naptime and the push for solid food. We were overwhelmed by the joy of her first laugh and every laugh after that. We watched with some level of wonder as our daughter magically transformed from someone we read to into someone who could read, and most recently into someone who, in a few years, will go away to college.

Like them, I imagine, we feel exceedingly lucky.

* * *

Paulette Kamenecka is a writer interested in health and the mysteries that persist about the human body. This essay is a chapter from her manuscript, Homunculus Angry: My Cage Match with Autoimmunity, out on submission to various agents.

Editor: Sari Botton