What Losing My Daughter Taught Me About Living

Welcome to Mothership: Parenting stories you actually want to read, whether you're thinking about kids or not, from egg-freezing to taking home baby and beyond. Because motherhood is a big if — not when — and it's time we talked about it that way.

“What do you think Cora would have said if you had told her she was going to die?” was the question from my 12-year-old that punctuated the silence between YouTube videos during a recent family dinner. I paused before blurting out, “She would have laughed. She would have said that was the silliest thing she had ever heard.” And I believe it.

My third daughter was born, on a bright and chilly December day, facing a life of uncertainty that threatened to rock my well-ordered existence. I had developed a knack for making things look wholesome and intact from the outside. I had learned that there was little I couldn’t gloss over with a smile and a pair of well behaved kids. Put them in matching outfits, and the deal was sealed. Careful impression management, I call it. That all began to change on an August afternoon more than seven years ago, when the ultrasound technician paused a sticky wand on my swollen abdomen as he struggled to image the four chambers of my unborn child’s heart.

“There is something wrong,” he said, before ushering me to a genetic counselor who promptly asked if I wanted to terminate the pregnancy. I contemplated abortion, seriously, for the nearly hourlong drive home from the hospital. “If I have an abortion, will we name the baby? Will we be able to have a service? How will I explain to people that I am no longer pregnant? What will I tell the kids?” I asked these questions of my then-husband, and also myself. I was so stuck on what people would think I was nearly incapable of making a decision. It’s as if the certainty of things not working out would be easier to stomach than the uncertainty that they might. I had no faith, but I knew my life was never going to be the same again regardless of my choice, and I knew I would be haunted by the “what ifs” of a rash decision. So I waited. And that meant carrying to term.

Cora was born with a rare Congenital Heart Defect, hypoplastic left heart syndrome, that redefined our family’s sense of normal from the moment we learned of her diagnosis. “Your sister has a special heart,” I explained to my two older daughters, which they understood made her different. As for Cora, it was simply the overarching theme of her short yet profound journey.

Cora was born at Brigham and Women’s Hospital in Boston, nearly 150 miles from our home in the Berkshire Hills of Western Massachusetts, and her entry to the world was marked by a packed house of highly trained doctors and nurses, medical fellows and cardiac specialists, all of whom had been eagerly anticipating her birth. I remember holding her for the first time, feeling relief and the tangible satisfaction of her finally being in my arms, while peering down at her smooth pink chest. In what was a suspended moment in time, I recognized — if only for a second — that this normalcy was fleeting. She was first taken to the NICU and ultimately transferred to Boston Children’s Hospital, via a glass walkway called “the bridge,” that both literally and figuratively connected the two edifices where my daughter’s short life began and ended.

While my first two experiences giving birth had left me exhausted and fully expecting the sleepless nights that would follow, Cora was born into a veritable village. This support system not only allowed her to thrive, but it also assuaged the alienation I had so often felt as a mother to a newborn. I was never alone. In fact, I grew to despise the fact that I was nearly incapable of parenting Cora on my own.

A mere six hours after having given birth to her, I traced the tiny details of her countenance, breathed in the scent of baby hair, and sang to her from beneath heavily lidded eyes. I then swaddled my newborn daughter and left her in bed space 27 so that I could get a good night’s sleep. It's as if tiny kernels of faith were planted in both of us then — kernels that would blossom over the ensuing five-and-a-half years, symbols of the inherent possibility that can come when you embrace all the uncertainty of life.

Cora’s first open heart surgery, when she was just two days old, punctuated the illusion of perfection I had been striving for. There had been something alluring about the idea of an abortion — the promise of wiping the proverbial slate clean and trying again — but that decision did not resonate with me. Almost from the start, Cora boldly challenged my understanding of the difference between being alive and living. Her demonstration that every challenge is an opportunity for growth bumped up against my misconception that a successful life was marked by a smooth, unimpeded path.

Cora took every obstacle thrown in her way and crushed it. Her first two weeks of life at Boston Children’s Hospital taught her to trust others; our successful breastfeeding experience, despite doctors’ decree that it was impossible, strengthened our gut instincts; her countless hours in OT, PT, and speech therapy created an army of supporters who cheered tirelessly for Cora; and slowly but surely, a steadfast and confident little girl was shaped by her seemingly disadvantaged circumstances.

With her purple, plastic glasses and the pump-infused central line that fueled her tiny, broken heart, Cora walked with such clarity and conviction for the simple fact that she knew no other way of life. She took a life others saw as riddled with challenge, and approached it with joy. This spirit allowed her to her attend pre-school while in heart failure, to ride the white van to school despite chronic vomiting, and to do front flips on the trampoline while just 85% oxygenated.

She was also demanding and challenging: My taking away her pink iPad could result in Academy Award-worthy histrionics. She tried to eat nothing but condiments, often licking pools of Ranch dressing from her plate without ever touching one of the vegetables she was meant to dip. But that’s because she was a kid, not because her heart was broken.

Cora’s resilient spirit also forced me to be present. To stop planning. To live fully, in the moment, and cease entertaining the “what ifs” that threatened to rob me of being alive — and thriving — alongside my littlest girl.

Watching Cora live her life, through the six open-heart surgeries she went on to face in not as many years, fueled my growth when I might've expected myself to dissolve. I got my fill of experiencing Cora while she ate ketchup straight off the plate, belted out “Let it Go” into a makeshift corncob microphone, and recited her favorite bedtime stories from memory while licking her index finger each time she turned the page. Giving Cora the chance to live was an exercise in faith; I chose to believe there must be good to come from the uncertainty that threatened to engulf us. It also allowed me to experience pure selflessness, the kind people offer in the face of someone else's unimaginable grief. Denying Cora the chance to live would have provided me some certainty, but it would have never saved me from my pain. It would have created a different, excruciating pain as a result of the not knowing.

I remember, in vivid detail, finding out Cora would get a new heart. It was an event our family waited for and talked about with nearly as much anticipation as Cora’s very arrival in the world. We’d been hoping for this phone call for more than 18 months; when it came on a hot July evening, I was still wearing the navy blue bikini I had both cooked and eaten dinner in, after spending the day at the lake with my girls. I'd shower only after every last drip of the day had been wrung out. And then, Cora’s dad pulled the curtain back just far enough to whisper words that would become another indelible mark on our story: “We got a heart.”

It was ironic, in the end, that I still had to make the excruciating decision to end my daughter’s life. After she spent 17 days on life support, we accepted the fact that Cora’s perfect new heart — one given through the epitome of selfless generosity — had become damaged beyond repair due to antibody rejection. And so, in the waning hours of a September afternoon, I held my special girl for the last time. She felt heavier than I had remembered, but also far lankier. Her long legs dangled off of my lap as I cradled her head, with her boy-short haircut that had grown out. As I stared down at her face, newly freed from a tangle of cloth tape and a breathing tube, I drank in the details of her rosebud mouth and realized that the connection we had forged through seemingly insurmountable obstacles was not ending, it was simply changing. While I was bidding farewell to the lone freckle on the bridge of her nose, her long lashes, and the full, ruddy cheeks I loved so much, I was not saying goodbye to Cora.

I had kept vigil by Cora’s bedside, while a machine did the work of her heart and lungs, as Cora was physically present but unresponsive for more than two weeks. The decision to take her off of life support, I began to understand, was to follow a path Cora had already cleared for me: Stomp on through the obstacle and embrace what transpires as a result. On that beautiful fall day, I was certain of my task: to simply free Cora’s physical body from the pain of dysfunction and to unleash her spirit in a way she had been modeling for me all along. Thinking back to how scared I had been when pregnant, it became clear: I chose to prolong Cora’s life, because I wanted to postpone her death; in retrospect, it was embracing her life that gave me the freedom, the permission, to face her death. I remember feeling like I was supposed to be scared, but I wasn’t. I actually felt relieved.

Those few years before, despite being faced with a difficult journey ahead, I was terrified by the prospect of ending a life. And I am thankful for having been afraid. The uncertain circumstances of my daughter’s life allowed us to forge a connection that rivals any bond I’ve ever experienced. Even in the midst of my despair, I continue to cling to the gifts of Cora: Her short life taught me to embrace uncertainty, which ultimately taught me to embrace life. Rather than languish on my journey, and admit defeat when things become difficult and painful, I’ve learned to take pause; I'm certain that to feel the inherent discomforts of life ultimately allows us to soak in its pleasures. And this, I’ve learned, is what it means to live.