Photo: Roberto Caruso, Dress: Kathryn Hayward
They say we have an unlimited capacity for memories for an infinite period of time. This is both a blessing and a curse.
I remember the first weeks of my first pregnancy and it makes the hairs on the back of my neck stand up. It makes my skin tingle. It makes my eyelids heavy. Pregnancy, specifically the as-yet-unannounced kind, is so very lonely. There’s only you and the shark-infested pregnancy message boards of the Internet to turn to. You can have a loving and understanding partner who just gets it. You can be surrounded by people and still feel very much alone. No one knows, but your clothes are tight, you’re suffering from bone-crushing fatigue and often you’re so nauseous you just want to lie on a cool, tiled floor all day. On the subway, you think it’s blatantly obvious that you’re nine weeks pregnant and you need a seat—it feels so very real to you, but not to anyone else.
Those stressful months yielded a nine-pound baby boy with grey eyes and a hairy back who instilled in me a sense of great pride for what I could do and of great failure for what I could not. I was supported in my accomplishments as a mom, but I couldn’t reconcile them with the things I couldn’t do or wasn’t good at. The loneliness of that first trimester bled into the “fourth trimester” and I longed for a safe place to go for more information. Ten days after my son’s birth, I learned that he had a rare disease and would be developmentally delayed. I wanted camaraderie. I wanted commiseration. I wanted to know, beyond a shadow of a doubt, that I was OK and that he would be OK and that everything that was happening was totally and completely normal.
By the time my second baby came two years later, there had been a sizeable shift in the concept of an Internet community. Far more parents were willing to comfortably expose the most taboo of subjects. I felt far more educated and supported. Other moms—often strangers—lifted me up on the darkest of those early second-baby days. This time, I had it down pat. My memories of my second mat leave serve me well—I can still feel the pride I felt at my mane of voluminous postpartum hair and the easy confidence I had about everything. I plunged fully into motherhood, taught mom-and-baby fitness classes and embraced every moment of subsidized time with my second baby and my first son, who was entering preschool.
But when a third and most unexpected pregnancy slapped me across the face pretty late in the game (I learned of my pregnancy at 18 weeks after a month-long flu last winter), I had nowhere to turn. Those deeply lonely feelings of my first pregnancy flooded back. I had felt alone before, but this time I knew, inherently, I was truly alone. Where does a recently separated mother of two who makes mini taco salads for the preschool end-of-year picnic go to talk about terminating an unexpected pregnancy? With two active kids, another baby felt impossible.
I still needed time to process, to feel and to think. I wanted to talk it through with my old community of moms, but that wasn’t the right sounding board. This would be that one thing that happens in a person’s life that has to be done alone. So the day I learned of my pregnancy, instead of calling someone, I cried on the subway all the way home. I had only just reached a point in my life where I was slipping up less and learning how to parent solo better. The boys were now six and three and a half, and we’d been on our own for a number of months. My life was finally starting to open up in all the ways I’d craved. That tearful ride home, the memory of it, will stick with me always. I had no control over the tears. I sat with a tear-stained lapel, hands clenched in fists, sunglasses on in an attempt to hide the chaos happening beneath.
I had two beautiful kids. How could I ever consider any choice but bringing this next one into the world? With so many friends battling infertility, how could I dare think of anything but having this baby? I left the office of my elderly obstetrician—a man who had been delivering babies for 40 years—being told to make the best choice for my family, but to remember that I was almost 35. This could well be my “last chance,” my desire to have no more children notwithstanding.
After the boys were tucked in, I spent the night pacing, tearing my cuticles apart and searching the depths of the Internet. I didn’t sleep—I couldn’t—but I had somehow come to terms with it. My boys would have a sibling. I had a community of wonderful neighbours and friends who would support me. We would be OK.
My prenatal tests were rushed because of the lateness of this revelation, so in a matter of days of learning that I was pregnant, I had the results. As quickly as I had come to terms with the decision to keep on, the rushed first-trimester screenings came back showing a high risk for Down syndrome.
Once again, I cried on the subway all the way home. For days the tears would come without warning—at work, while waiting in line for a muffin and when I was in transit. I cried the kind of tears that don’t care where you are or what you’re doing. The kind that defy your pride and expel themselves aggressively onto your jacket collar and your purse. The kind that incite stares from strangers, though no one ever works up the guts to comfort you. We’ve all seen it. And we’ve all looked away for fear of overstepping boundaries. But it was only a screening test, and I was too young for this to be a serious risk. What a “positive” test means is that your probability of having a baby with Down syndrome is higher than optimal. My “risk” was 0.03 percent and that was “too high.” So, I met with a genetics counsellor and a social worker and they told me I could have a non-invasive prenatal test (NIPT) that was so new that it hadn’t been available with my two boys. It had a higher rate of accuracy and would guide me to the next steps. And it was simple—just another blood test.
I convinced myself the test would come back negative and this nightmarish roller coaster would end. I could get back to the somewhat-less-terrifying idea of bringing a third child into the world and start choosing names and decor themes and finding out the sex and buying clothes (since every baby item I owned had long since been donated, sold or given away to a friend). But then the hospital called: The results had come back showing a high risk again, and I needed even more testing. The next and last step was an amniocentesis—that terrifying, needle-in-the-gut test that carries a risk of miscarriage. I cried on the subway all the way home that day, too. These tears were sharp and they pricked my eyelids as I tried to hold them shut tight enough to stop. There was no match for this kind of loneliness. I wondered where you go on the Internet to talk about how you feel the day before an amniocentesis that you’re pretty sure will give you the worst information you could hear for the baby you’ve only just come to accept is on its way.
The amniocentesis was positive, too. The doctors congratulated me on my soon-to-be baby and gave me some website links. Find a community of support, they said. Read some books. Your baby is going to be different but perfect all the same.
I convinced myself once again that everything would be OK. I had one certifiably disabled boy, and he was happy and healthy. I could do this again. Alone. I was going to be OK. My family, plus one, was going to be fine.
The next day I spoke with my genetic counsellor. Part of her due diligence was to provide people like me who had recently received this kind of devastating news with all of the information about all of their “options.” We spoke of termination and adoption and of raising the baby. I sobbed and swore and screamed and quietly wept behind her doors until I told her I was keeping it. Keeping her. A little girl. My only one.
I went on to choose her name and a series of art prints featuring the likes of Gloria Steinem and Michelle Obama and Malala Yousafzai for her nursery. I dug up the little white dress with bands of pink and blue running through the hem that my mom, 34 years earlier, had dressed me in to bring me home from the hospital. She had given the dress to me when I was married, knowing one day I’d probably bring a little girl of my own into the world who would undoubtedly need this knit dress that screamed 1982.
Then at work one day, my iPhone screen lit up and vibrated across my desk. It was the hospital calling, again. Scheduling, I thought. Some kind of appointment with the same obstetrician who had cared for me during my first two pregnancies or that dreaded glucose tolerance test. All of this, after all, was about to become a part of my life again.
But the voice on the other end was that of the genetics counsellor I had been working with—the one whose office I’d cried in. The one who I had screamed at and sworn at and accused of lying to me. The one who sat there, calm and stoic, as I laid everything before her. Now, on the phone, she apologized profusely. She said she was “so sorry.” I didn’t understand. Then she said, “Irreparable heart defect.” Pieces of brain and bowel missing. Deficiencies “not compatible with life.”
None of this had been compatible, after all.
I was 21.5 weeks along, and my little girl was going whether I willed her to come or not. She was going to go before I had a chance to join my local Down Syndrome Association or meet other parents or find the community I needed. She was going to go before the Etsy package with those feminist art prints for her little room arrived. She was slipping through my reluctant fingers.
The following days remain vivid, though I wish they were a blur. I wish I could forget. I remember asking myself, quietly and repeatedly, how I would ever feel the same again after this. How would I ever be the same person, woman, mother. Would I ever be funny again? Would I ever put on lipstick and go out dancing with friends without only thinking about her? Would I ever see a pregnant woman or a mom pushing a stroller and not feel this tremendous sense of loss and guilt and anger?
At 21.5 weeks, while gripping the hands of strangers, she came and went after a day-long ordeal. A real labour and delivery, just like my other two. So similar yet painfully different. No car seat required to go home. No flowers. No sushi and no glass of wine for that first meal. I wasn’t going to be bringing her home. She had already gone to wherever that was.
My most surreal memory—the one I am sure is infinitely stored—is of holding that little girl who would never take a breath of air outside. A few hours after she was born, when I decided I could see her, they brought her to my room. She was dressed in the tiniest white knit dress and hat, resting in a white basket. She was perfect. Compared to my eight- and nine-pound boys, she was impossibly light and fit in the palm of my hand. She had a perfect, tiny face, like a little doll.
I came home and fell into a haze. I adopted every vice I could think of and lazily traipsed from day to day with no motivation to do anything. I ran repeatedly to the white embroidered linen envelope the nurses had given me when I left the hospital, but I couldn’t muster the strength to open it. I knew there were pictures of her inside. I knew there was a piece of paper with her stats written on it. I knew her name—I had given her one—and it sat on my lips because I never had a chance to call her by it. In the days and weeks that followed, I wondered where it was that one could go—what community, what online chat group—to talk about how I was feeling. Where could I go to talk about something that was so completely real to me, but not to anyone else? It was like that first pregnancy all over again. Lonely. It was definitively taboo. No one wants to talk about dead babies. No one wants to look at their pictures and their handprints and footprints. No one.
I still think of her every day. My body still bears the signs of having been recently pregnant: lax abdominal muscles, a thicker waistline. I feel part grief and part relief for her. When my boys run ahead of me, I see a gap between them where I would have been now, pushing her in a stroller flanked by her two brothers on their way to school. And I wonder where you go to talk about that.