Milton Bradley For Beginners

It was the perfect winning strategy until the game board flipped and shattered all the pieces.

I was 34 years old and pregnant for the third time when my deliberately well-ordered existence came to a screeching halt.

“There’s something wrong with your baby’s heart,” the perinatologist almost whispered after pausing a sticky wand on my swollen abdomen during a Level II ultrasound. I had known to look for the familiar window shape broken into four symmetrical panes, its edges writhing and wriggling with life.

I could not find it.

Before talk of termination and hypoplastic left heart syndrome filled the airless space, I had one thought: I have a plan, and this is not part of it.

“You are the ship. If you go down, everyone on board will drown.”

In 1960, when Milton Bradley debuted its modern-day version of The Game of Life, my mother was repeating her freshman year at boarding school and my father was graduating from Harvard. To mark the company’s 100th anniversary, the updated design featured a three-dimensional game board with a built-in spinner. The premise was simple: players “drove” tiny plastic convertibles along a narrow track, earning and spending money along the way while encountering milestones — from landing a career to having children (tiny pink and blue pegs tucked into the backseat). The first to reach Millionaire Acres with the most cash won.

My parents left nothing to chance. After meeting (at the Episcopal church she attended, where he was organist and choir director), they began checking the boxes. Early in the game, each acquired a college degree and a career before getting married. They had children (two pink, one blue) and purchased a home. I grew up believing this series of conventional moves would lead to my future happiness. With few opportunities to forge my own path, I played along — checking the boxes and steering clear of obstacles.

When my youngest daughter was born, it felt like my tiny plastic car had skidded on black ice and gone into a tailspin. No amount of research prepared me for the reality of parenting a medically compromised child. The doctors’ plan, a trio of open-heart surgeries aimed at compensating for my newborn’s half a heart, was out of my control. I was terrified.

My husband assured me everything would be fine. I was not sure. After three decades of attempting to follow the rules and control life’s chaos, I had entered uncharted territory. Fewer than 48 hours after my daughter’s birth, I held my breath while her sternum was cracked open for her first surgery. Cora’s condition was fatal without intervention, so I let go.

It was the only option.

For nearly six years, surgeons attempted to repair Cora’s two-chambered heart in a process reminiscent of kintsugi — the Japanese art of reinforcing cherished vessels by making them beautiful at the broken places. In the absence of space to explore my fears I pursued a new path. With every open-heart surgery (there were six) and cath lab intervention (I lost count), I leaned into being present.

Cora faced myriad complications, from mechanical valve replacement and anticoagulant therapy to acid reflux and g-tube surgery. With each zig and zag away from the conventional path, my own transformation took root.

Living parallel lives at opposite ends of Massachusetts became our family’s new normal. Patrick stayed in the Berkshires teaching history and ushering our two other girls through their daily routines while I kept Cora company in Boston. We’d occasionally switch roles for holidays or parent-teacher conferences, our matching minivans passing one another on the Mass Pike without notice. Most nights, the girls connected via FaceTime to catch up and giggle. To find us all under a single roof was rare.

The diagnosis of end-stage heart failure came on Cora’s fourth birthday, which she and I spent at Boston Children’s Hospital. She pedaled her tricycle in a loop around 8 East, pausing to share an Elmo cake covered in thick frosting fur with her favorite nurses. After drifting off to sleep, Cora was added to the transplant list. It was the only move left to make.

We waited 18 months for a new heart. Each morning, as Cora slipped her slight arms into the straps of a backpack bearing an infusion pump that fueled her failing heart, no one dared mention what we were really waiting for — the death of another child roughly the same age and size as my daughter. This knowledge, like the equipment keeping her alive, felt burdensome to carry.

When a donor heart did arrive, it was not the miracle fix our family had anticipated. After several weeks of groggy consciousness, Cora crashed. The sheer volume of other folks’ blood products swirling about her system ganged up to attack her healthy heart.

Cora’s cardiologist gave a matter-of-fact explanation. “Each of us has two hands. In one, we are holding hope that Cora will make a full recovery. In the other, we are holding space for the fact that she might not.”

Kathryn and Alice doted on their little sister, unbothered by the rhythmic clicking and whirring of an ECMO machine performing the work of another failing heart. They took turns painting Cora’s fingernails with pots of purple polish from the hospital gift shop, reading aloud from picture books about Murphy the dog and Pinkalicious, and styling her hair in pigtails and bows she’d have never tolerated if alert.

I wondered if they knew Cora wasn’t coming home. Or starting kindergarten in the fall. Or splashing with them in the lake like they had promised.

The truth would crush all of us, so I didn’t ask.

***

Cora died on a September afternoon, 49 days after receiving her donor heart. The details have blurred around the edges with distance. I no longer remember the familiar smell of adhesive tape criss-crossing Cora’s face or the weight of her body draped across mine as life support was withdrawn.

I do remember this: After exiting the hospital one final time and stuffing our daughter’s belongings into the backseat beside an empty car seat, Cora’s father and I did not speak.

We drove from Boston to the Berkshires in silence. The 125-mile journey was reminiscent of another return trip from a different hospital. Six years prior we had been equally incapable of communicating about what bringing a medically compromised child into the world entailed and the chaos it would create.

My eight-year-old was crumpling at the concept of cremation. “I want to see her dead, don't you?” she asked her older sister. “I don’t care,” my 11-year-old responded. “When you’re dead, what does it matter?”

Back then, the unknown had been too painful to speak aloud, so we avoided the subject. Instead, we set to work dividing and conquering, tending to our three daughters and their diverse needs while our relationship slipped through the gaping cracks in between tasks.

“You are the ship,” my therapist told me as September waned. “If you go down, everyone on board will drown.”

I contemplated this notion after dropping my kids off at the bus stop and going through the motions of going to the gym, meeting friends for coffee, folding laundry, cooking dinner, and tending to my kids’ questions.

“But where did Cora go? Where is she?” my eight-year-old wanted to know. She was crumpling at the concept of cremation. “I want to see her dead, don't you?” she asked her older sister.

“I don’t care,” my 11-year-old responded. “When you’re dead, what does it matter?”

I did my best to make space for their needs. In a house where quiet filled every corner, punctuated only by bursts of screaming at the dinner table, this was a challenge.

Amidst my grief, I came to a conclusion: Trying to adhere to the conventional path had not elicited happiness; it had made me miserable. I had gone from being my dad’s daughter to someone’s wife without ever becoming myself — something I needed to remedy if my daughters and I were to survive.

***

Three months after we buried Cora’s ashes under a half boulder at the cemetery in our rural town, I filed for divorce.

This new chapter was bittersweet. I saw my kids half as often, but we talked twice as much. When we were together, I was present. And the more I listened, the more they talked. Being in the presence of my undivided attention was a novelty to both of them so they shared big feelings about their sister’s short life, and feelings that included regret and relief.

When The Game of Life appeared under our Christmas tree that year, the changes were evident. The 1960s-era convertibles had been replaced by minivans, the once binary pegs were now rainbow colored, and the option to expand one’s family included adopting pets. I had not laid eyes on the board game since third or fourth grade when my best friend Beth and I engaged in heated matches after school and ate bread-and-butter from the microwave. For Alice, the game was comforting. Round after round, she hoped for the same outcome: to become a veterinarian and retire to a cottage in the country. Kathryn, favoring strategy, learned to play backgammon and often walked next door to play with her grandfather.

Each of us found our way through the mess in different ways. My oldest daughter’s path included attending extra sessions at sleep-away camp, applying to boarding school, and choosing a college more than 1,700 miles from home. My middle daughter (who, with no little sister to care for, quickly rejected that descriptor) chose to seek solace in nature by working on a local farm, and transferring to a tiny Waldorf high school that nurtured her curiosity. I quit my teaching job, one of many conventions that no longer served me, and took up freelance writing. We traveled to the beach in Maine and Long Island, to London and Montreal — freedom my daughters had never felt before.

***

It’s been ten years, and my (mostly) grown daughters and I have come to agree: Life is easier without Cora. And we miss her terribly. These are the truths we confront around the dinner table while devouring Indian takeout straight from the containers. Between bites of chicken tikka masala and dal makhani, we debate ideal study abroad destinations, discuss best practices for raising backyard hens, and acknowledge how we might still be going through the motions of simply being alive had it not been for Cora’s death.

Each day, our hands remind us that beauty and pain can coexist. Cora has been gone almost twice as long as she was alive. Still, she remains the fuel in our tanks, the experience of having loved her urging us on toward the brilliant unknown.

In keeping with the rules, her donor remains anonymous. Their family's gift of a whole, healthy, four-chambered heart might not have saved Cora’s life for as long as we’d have liked.

But it sure did save ours.

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Hannah Van Sickle is a former educator turned freelance writer whose journey raising daughters has been chronicled at Parents, She Knows, Modern Loss, and Refinery29. This September marks ten years since her five-year-old died following a failed heart transplant—breathing unexpected life into her mom and big sisters. Hannah lives and works in the Berkshires of western Massachusetts. She is at work on a memoir.