The first memory I have of our camping friends is of the day our daughters started kindergarten. We weren’t camping friends at this point, just parents of two children apiece. Their daughter—crying quietly at her desk. Mine—bright-eyed in her blue/green/white plaid skirt, matching headband, white polo.

Outside among the lunch tables, the husband of the crying child hugged his wife. Hearts pressed together in an embrace; the wife’s tears soaked into his button down. It’s not easy to separate with your child so distressed. I felt for the couple having a hard time, but my shoulders relaxed in relief as I turned the key in the ignition. One child in full-day school—the freedom! Plus, my daughter was fine separating from me. This farewell was no different than any before it. Why are you still here, Mom? I smiled, then my forehead crinkled in a frown. I felt a tug at my heart and a sting in my eyes—Kindergarten is a big milestone. They’re so complicated, our hearts.

We got to know that family over the next few years. It helped that our girl-boy pairs of children were the same age. We began camping together. We had many adventures among boulders and pine, careful to avoid rattlesnakes, experiencing the grandeur of sequoias, our kids slipping and splashing down natural rock slides. We huddled around morning campfires to stave off chill mountain air.

Our camping friends were a lovely family in every sense. The parents both worked full time and were a devoted team. They put their family first always. The father was a gentle teacher, cracking open the world around his children to reveal the wonder inside. On a hike, if a stream needed to be crossed, he’d crouch down to discuss the wisest approach. He’d explain the slippery moss, the pull of the flowing water—his children listening, rapt.

My husband’s urging for caution would bounce off my daughter’s back.

“I KNOW!” she’d shout as she charged toward the crossing.

She’d wail ferociously when she splashed down—hard. I’d close my eyes and exhale long and slow.

The camping siblings were sweetly devoted to each other. Most times they were playmates, but sometimes the sister would mother her brother which he was content to abide. When they sat, it was close—legs, hips, arms pressed together in a tight, impenetrable seam. The mother was effortlessly fun. She baked piles of brownies from scratch in her home that was full of dogs and a cat, laundry, casserole, and plasma cars the kids were allowed to zigzag across the wood floors of their bungalow. I never heard any of them raise a voice. What was the secret? It was beautiful and baffling.

My experience mothering children was much different. A stay-at-home mom, I was generally looking for a break, which seldom to be found, made me irritable, exasperated. As subdued and peaceful as the camping kids were, mine were full of fire and feist. But more than that, these years of early motherhood were staggering. I was staggering. The demands of mothering were ceaseless, the stakes sky high. I held on tight, white knuckling my way through.

This is why no one was more surprised than me when in a few years time a thought blossomed and took hold. We should grow this family. Never mind that I was on the brink of realizing my dream: Two in full-time school—the freedom! Never mind that I did not characterize myself as particularly good with infants. Or toddlers. Those early years had been an army crawl for me...muddy, punishing, graceless. It’s why we trimmed our desired family size from five down to four in the first place. My brain knew this. It was practically fact. I talked myself out of this wild and irrational dream. But I kept having to talk myself out of it. Over and over for half a year. Despite what my head knew to be true, my heart held the most compelling and persuasive reason in favor of this incongruent, inadvisable dream. I already love her.

I knew two things beyond a shadow of a doubt: Baby #3 would be a girl and she would be a sort of re-do. I wanted to relax and enjoy motherhood. We were far from the familial perfection of our camping friends, but I had been a mom for a decade by now. I wanted a shot at finding joy in the early years. Soon, I learned I’d get another chance.

Yet it wasn’t long before the definitive edges of that dream wavered. A blood screening came back with results that my midwife had never seen before: Uninformative DNA pattern. May be due to chromosomal abnormality. Repeat testing not advised. These staccato sentences sounded foreboding—the most elemental structure of my dream in jeopardy. Not long after, an ultrasound revealed more worries—a two- rather than three-vessel umbilical cord and a slightly elevated nuchal measurement. Both signaled the potential for chromosomal anomaly. Most concerning of all, the baby (who I knew was a daughter) had a breech in her abdominal wall.

There are two types of abdominal breech, and it was too early to tell which kind my baby had. Both involved a hole in the abdomen and organs in places organs ought not be—outside the abdominal cavity. One version had the organs contained in a kind of exterior sac. In the other, the organs would be completely exposed, floating in the amniotic fluid outside her body like an astronaut on a weightless walk. I couldn’t even pronounce the terms, so I asked the impatient perinatologist to write them down for me which she did, in haste, on a neon pink Post-it.

Omphalocele

Gastroschisis

The perinatologist’s irritation with me was exacerbated by the fact that I wouldn’t agree on the spot to schedule a chorionic villus sampling (CVS), an invasive procedure that carried with it no guarantee of answers and a risk for our baby. But we have findings, she kept repeating, as if I didn’t know what she meant. But I did know: I already love her.

While pregnant with this youngest daughter, I learned to double down on what my heart knew. I had to—we were drifting in an ocean of unknowing. During the entire pregnancy, we didn’t receive a single definitive sign. One test would reveal potential risks, another would rule them out. For weeks our girl’s hands stayed clenched shut on ultrasound after ultrasound. It was an indicator of neurological issues, my new perinatologist told me. Then miraculously, one week a bluish, white extended index finger floated across the field of fuzzy black. The new perinatologist’s eyebrows shot to the sky and she smiled. Some signs pointed to trouble. Some gave reason to hope. Yet, somehow, my powerlessness over it all was a release. Learning to ride the uncertainty—so I wouldn't drown—was an important skill for survival.

At two weeks old, our daughter was diagnosed with a rare condition called Pallister-Killian mosaic syndrome. It has a range of severity and associated symptoms. Our daughter has global delays and low muscle tone. She needs respiratory support and a feeding tube. Her hearing loss was discovered at two months, vision impairment when she was a year and a half. This is a considerable list, and it merely whispers at the full scope. Just as PKS has a range of symptoms from person to person, it also has a range of outcomes. Our unknowing contains some aching possibilities. Top of that list—we might lose her.

*

 Over the seven years we had known our camping friends, there were little reminders tucked here and there that their daughter had a heart condition—cardiomyopathy. There were art lessons instead of dance or sports. She couldn’t run during PE. Her mom advocated for an AED machine to be installed on the school campus. The device could be lifesaving if her child had a cardiac event at school. But it was still a shock the day I opened the computer to a post of the smiling daughter in a hospital bed. Her condition had progressed to the point that she needed to be in-patient until she could receive a heart transplant. Weeks and then months went by.

In this different sort of wilderness, I found new common ground with my camping friend: We are moms familiar with long hospitalizations, moms of children with serious medical conditions. We are moms forced to make friends with the unknown.

With her daughter in the hospital precariously waiting for a new heart, I thought a lot about the secrets my camping friend had known all those years that I did not. When I looked on in wonder and longing at her maternal perfection, I didn’t know all she held in her heart. Her tears outside the kindergarten classroom, the brownies, the cars inside the house...all of it came into sharp focus now. I understood that those choices might have been because she knew—even back then—she was navigating the unknown. The unknown changed my motherhood, too.

When we got news from our camping friends that a heart was available and surgery would happen in a few hours, it was the heaviest happy I’ve ever felt. For one, I could not get the donor of this heart off my mind. One family’s miracle was a black hole for another. I also couldn’t stop thinking about the heart of our camping friends’ daughter.

That heart—the original—would have been a herald, the very first sound from child to mother. The ultrasound tech would have rapped a few keys and flipped a switch. Turned the volume up loud and the static-y, underwatery, fetus-rapid beat—WOW-wow-WOW-wow—It would have filled the room. Many weeks later, curled to her mother’s chest—skin to softest, freshest, newborn skin —their hearts would have pressed together, meeting for the first time. Years later, a running greeting at daycare pickup. Arms thrown wide, mom balancing on one knee in heels and skirt as her preschooler crash lands. Heart hugs to heart—a cheek warm, squishy, and a little bit sticky beneath a hello kiss.

What happens to a failing heart once removed? Where does it go? Surely a heart is not just discarded. I asked a nurse friend. She could tell I was sad about the old heart. She said it depends. It might be donated for research to learn more about the condition that caused it to fail. This way they could learn how to help other faulty hearts in the future—prevent, treat, cure them even. It felt better to know this broken heart would not go to waste.

There is so much a heart holds. It’s more than an organ. At the same time she celebrates, I wonder if my camping friend also mourns her daughter’s heart. Does she feel tied to that organ she herself grew? Is it hard to let it go? Of course I know all that emotion and memory, all those ties—those heart strings—they really reside in the brain. But if a heart isn’t donated to science, I don’t think I could bear to part with it. I wouldn’t feel the same way about a kidney or gallbladder; those could be discarded. But not my child’s heart. I'd need to take its remains, maybe bury them in a tiny wooden box beneath a flowering tree.

Today, three little hearts tick-tock along with mine. I cannot know what will happen tomorrow and somehow this unknowing allows me to grip a lot less. This wilderness is frightening, but it is also spacious. Today, when I close my eyes and exhale long and slow, there is ease. Today, my heart knows joy.

Sometimes I think about the new heart of my camping friend’s daughter. It lived an entirely different life before the one it lives now. And yet, when she grows up and remembers the majesty of sequoia trees and zipping down the hallway in a plasma car after her little brother, warmth will spread across her chest. Because this heart, too, will know.

There are so many secrets a heart cannot know.

Until it does.

-Jennifer Lendvai-Lintner

Jennifer Lendvai-Lintner is a writer, reader, teacher, and mother. She is also a late-bloomer, working on her Master of Arts in Writing at Rowan University where she also teaches First-Year College Writing. She is the 2023 recipient of the Denise Gess Literary Award for Nonfiction and a 2022 Writer's Digest Award Winner.