30 years of longing: How I lost my twin girl and joined the throngs of forever-grieving parents

Every parent of a dead child faces one simple math problem: How many children do you have? And the answer always requires a mental calculation.

In my case, should I say “three,” or “three living children,” or “four,” knowing those answers will open me up to a further conversation. Or tears.

I am never sure if I want to bring up the death of our carmel-haired 2-year-old daughter, yet it pains me to render my little girl invisible, or worse, nonexistent. But do I have time (or inclination) to tell the story? Do others even want to hear it?

It doesn’t take a flying DeLorean or Marty McFly to take me back 30 years to the morning of Jan. 18, 1994. I close my eyes, and I am half-lying on our floral-colored couch holding Camille Elizabeth Stack on my chest.

She was born with a congenital heart defect so serious that the first doctor told us she wouldn’t live a week, and so terrible that open heart surgery and several other procedures couldn’t fix it. Camille has the hiccups. I can feel the labored spasms against my belly. I whisper softly into her ear to hang on until the summer, so she can frolic in the sun with her identical twin, Karen. She needs to stay alive, I tell her. She has become such a symbol of hope for our extended family.

Then I hear a faint voice in my head, saying, “Do I have to be superbaby, Mom? Can’t you let me go?”

Around 6 a.m, I pass her to my husband, Mike, and she stops breathing. She is dead in his arms. He lets out an animallike howl. We then sit there on that couch in numbed silence. In a way, that moment is more holy than any church service.

The next few hours pass in slow motion. I am stunned that the sun has come up, taking no notice of our devastation.

Our three other pajama-clad children come bounding into the living room, as light peeks through the curtains. They have no fear or squeamishness seeing me holding Camille’s still-warm body. Jamie, nearly 6, says she looks beautiful without her oxygen tube. Suzanne, almost 4, thinks Camille is sleeping. And Karen fetches a blanket to help her twin stay warm.

That morning everything changed for our family. And, for the past three decades, I have found myself inexorably drawn — like a ship at sea looks to the nearest lighthouse — to stories of parents who have lost children. I want to know what they felt, how they coped. What did it do to their faith and their sense of normalcy? How did they handle forsaken dreams for the future? Did grief envelop them or did a series of subtle pricks sting them at unexpected intervals? What are the ways they remember that missing part of their family or have they blocked the memories as too heart-wrenching?

I want a piece of their learned wisdom. I want to understand our shared language. I want to weep with them.

Alyssa’s story

Ally and Eric Isom (with their other kids) found Alyssa Isom’s lifeless body in her Provo apartment on Sept. 23, 2012, but she likely had died a day or two earlier.

Alyssa suffered numerous health challenges, including Type 1 diabetes, Addison’s disease and hypothyroidism. Though she used an insulin pump that was supposed to communicate with her continuous glucose monitor, the technology was brand-new and may have failed to alert her that her sugars were dangerously low.

“We just didn’t find her in time,” Ally Isom says. “It was incredibly traumatic.”

The distraught mom recalls that she “was in a brain fog that first year and couldn’t get warm for a full two years.”

It has been a decade, and Isom says she still cries every day.

“I wish I could say grief gets easier over time,” she says. “For me, it is woven through every day in a tender way.”

The business leader does feel stronger now, more committed to self-care and building resilience, she says. “If anything, I just try to trust God, to trust it will all work out, that we will all be OK, that we will heal and be restored through the Savior’s grace, to surrender to the divine path we are all on.”

But grief turned her life inside out.

“Every milestone — her birthday, holidays, the 23rd of every month — unbearably heavy… sometimes bulldozing me with sadness and hopelessness,” Isom says. “I am more mystical now, less dogmatic or absolute, more trust of the divine, and the eternal, fluid nature of God’s work.”

Speaking about Alyssa’s death in the “Hope Works” series for The Church of Jesus Christ of Latter-day Saints proved difficult, but she felt “carried by angels, in both preparation and delivery, and granted power and focus beyond my own.”

She never leaves Alyssa “out of the count,” she says, but begins with the youngest and works her way up so she “doesn’t shock them with the tragedy.”

The siblings

A few weeks after our toddler died, our daughter Suzanne found me crying.

“Why are you sad?” the 4-year-old asked.

“I’m missing Camille,” I replied as she climbed on my lap.

Well, she says to reassure me, “You still have Jamie and Karen and me.”

She was right, of course. The three living children needed me, so mourning in their presence was going to be tricky.

If I grieved too much, my other children would think I loved Camille the most; if I grieved too little, they would be hurt to think I didn’t care about losing one of them, and what kind of parent does that?

Another dilemma: Were we going to sob every year on Karen’s birthday? Or were we going to forget that two babies were born that day, not just one?

So we created Camille Day for every Jan. 18 — 11 days before the twins’ birthday — to gather with our extended clan, to pull out all the photos, to cry, to remember. Then Karen could have her own day.

During his childhood, Jamie, the oldest, developed an interest in black holes, relativity and time travel.

“I incorporated Camille into my fantasy life, imagining myself rescuing her with some future medical treatment,” says our nearly 36-year-old son. “Mostly, she became part of our family’s story.”

He’s living in Berkeley, Calif., with his wife, Laura, and their two children, including a son who just turned 2.

The reality of his lost sister, Jamie says, “hits me harder as a parent than it did as a brother.”

Suzanne, the middle child, was always the one asking me tough questions.

“Do you promise me there’s a heaven?” she demanded to know at 6. I told her I hoped so, but I couldn’t promise.

At nearly 34, Suzanne still vividly remembers the day Camille died, even mentioning it to her therapist. She talks about the burial, when her 4-year-old self had wanted to say a prayer at the grave, but the hole spooked her, so she cowered behind me instead. She felt guilty about that “failure” for a long, long time.

As a parent of two children, living with her husband, Erik, in Salem, Ore., Suzanne now feels our anguish more fully.

“It is hard enough to have a healthy newborn,” she says, “but to have one with a medical condition — and three other kids — seems almost impossible.”

And then there’s Karen.

Sam’s story

On a routine trip to Indonesia for business in fall 2011, 28-year-old Sam Lee was mugged by two men on motorcycles who stabbed his thighs, robbed him and rode away.

The Korean American bled to death under the dark sky, among strangers, far from home — and far from his mother’s comforting arms.

At the time, his parents, the Revs. Yvonne and Eun-sang Lee, were pastors at separate Methodist churches in Utah. The fact that their son died, while passersby gathered around and did nothing, she says, “did not resonate at all with my faith in a God of justice.”

A “thick wall of grieving” grew in her broken heart, Yvonne says, which was built with “numbness and lostness.”

After more than a decade, though, she has reconstructed her faith in a more spiritual dimension. Now she senses that the Almighty has been present in her life, Yvonne says, “as a God of grace.”

Eun-sang’s despair was equally intense, but now he is at peace, where good memories “are with me constantly.”

The gentle minister, who leads a congregation in Montana, has built a tiny altar in their house and lights a candle in front of a picture of a smiling Sam every morning. He also marks with rocks every place the Korean American minister “feels Sam’s presence.”

They buried Sam’s remains in a Korean tree garden on a mountain slope, which they try to visit every year.

Sam’s older brother, Gery, has chosen to honor his sibling by taking on Sam’s generous, outgoing personality.

“I’m not one to strike up conversations with strangers, but he would always offer a smile and a handshake,” the older brother says. “Rather than quickly excusing myself, I find myself inspired to lean into them and become a better steward of goodwill like Sam was.”

The twinless twin

Karen doesn’t have her own memories of Camille apart from those planted by us. But being an identical twin became part of her identity.

“I had a strong desire to feel close to her,” she recalls, but never really sensed her twin’s presence.

Karen did have one dream as a teenager, where the entwined babies in the same amniotic sac were having a conversation in my womb.

“We basically knew what was going to happen, that it was going to be rough, and we weren’t going to be together long,” Karen says. “But we promised to have each other’s back, no matter what.”

Karen found a website, “Twinless Twins,” where she discovered countless others with heavy levels of loss, no matter whether their twin died at birth, at 2, 20 or 100.

Her “survivor guilt” was ever present.

“I worried that I wasn’t doing enough with the life I’d been given since she didn’t get much time. I had a deep sense that I wanted my life to be meaningful, to do something big like be a doctor in Africa, or cure chronic illness. I wanted her to be proud of me.”

Then, in her 20s, depression descended on Karen. It halted all her plans.

“I had to be OK with saving my own life and having a lot of small moments rather than grand gestures,” says Karen, who turns 32 this month and lives in Utah to care for her aunt, struggling with a lung disease. “I don’t doubt that Camille is proud of me for just existing, for choosing to wake up every day and having an open heart.”

And having that “connection with heaven — whatever that means,” she says, “is not nothing.”

Mercy’s story

Though Mary Mercy Harrison looked perfect, the sixth child of Mette Marie Ivie died in the womb before she could even open her eyes, take a breath or cry.

For a long time, the agonized mother refused to include the 2005 stillborn baby in her number of kids.

“If there were follow-up questions, I would fall apart and be inconsolable the rest of the day,” Ivie says. “Almost 20 years later, though, the grief has settled into something that I know well enough to carry with me. There are days when I almost forget that I lost a daughter.”

Yet there are still times “when it aches as badly as it ever did, when it hits me in the face,” the Utah novelist says, “and I believe once more that nothing in the world will ever be right, that I will never be anything but a grieving mother who lost her baby before ever getting to know anything about her.”

Since then, Ivie has faced other grave losses — her marriage, her faith community and her work as a writer.

“The reality of my grief is that I died when my daughter did,” she says. And so did the mother’s innocence.

There was “an easiness to being alive,” Ivie says, “that I will never have back.”

The doctor

Doctors discovered Camille’s “inoperable defects” on the twins’ second day of life.

She had no spleen, and instead of two pumping chambers in her heart, she had one, which sent blood to both the body and the lungs. Because her pulmonary veins eventually narrowed, she would need a heart-lung transplant, an operation that might not promise a good long-term outcome. After discussing it with several doctors, including Ronald Day, our pediatric cardiologist, we decided against it.

Today, infant heart and heart-lung transplants still are not that common — too few organs are available — though some surgeries to fix the chambers have improved in the past three decades.

It was, however, the pulmonary vein problem that limited Camille’s chance for survival.

Treatment options for narrow pulmonary veins have improved considerably during the past decade, says Day, who is retired but remains involved in research and advocacy for children with pulmonary vascular disease, so our daughter might have had a better chance in today’s world.

Every year of the cardiologist’s career, at least one or two of his patients have died.

“It is always traumatic and sad,” he says, but he often would go to their viewings and funerals, where he saw memorable photographs of the children outside the hospital and heard doting parents describe their time together as being filled with joy.

“Their lives were like cherry blossoms,” Day says, quoting a Japanese sentiment. “The sublime beauty of the flowers and their brief life at the beginning of each spring symbolize the essence of a human’s short life well lived.”

Nathalie’s story

On Dec. 29, 2009, Tekulve Jackson-Vann got the shocking news that his 4-month-old daughter, Nathalie, had died due to complications from her birth at 26 weeks.

Just the day before, a doctor had examined her and declared her healthy.

Jackson-Vann had completed his internship as a narrative therapist, so he tapped those skills to cope.

The Latter-day Saint temple “became a vital part of my healing,” he says. “I would often refer to time in the temple as ‘daddy/daughter dates’ with Nathalie.”

He always believed in heaven or an afterlife, but now, he says, his faith in the eternities “is unshaken because they are the only source of hope that I have to be able to hold her again.”

The therapist celebrates his baby girl with the color purple.

“When I see anything purple,” he says, “it’s like a message from her letting me know she’s near.”

On Nathalie’s birthday, he invites family and friends to dress in that color and send letters on stationery in one of its hues.

“Many people will say things like ‘at least she’s not in pain’ or ‘at least you have other children,’” Jackson-Vann says, “or ‘at least you had time with her.’”

Instead, he focuses on “at last,” when in a future life he can “hold her again and feel whole.”

The husband and father

Because our insurance came through my job, my husband gave up his work as a video producer to tend to Camille and the other kids. He made sure their time together was filled with normal activities like swinging, building blocks, digging in the sand.

Camille showed a resilience and stubbornness from the beginning. She was the first of the twins to pull out her respirator and the first to roll over. Though she couldn’t talk, she made her opinions clear. She liked Popsicles and shaved ice. She got nervous every time Karen (her much larger twin) tried to smother her with kisses. Yet she loved dancing with Karen in Mike’s arms and giggling to the antics of her sisters and brother.

Mike had his camera at the ready (long before cellphones) and snapped a photo virtually every time Camille smiled.

When she died, it unmoored his life and faith.

At first, he managed his emotions pretty well but about a month later, we bought a large turtle as a pet. It didn’t last a week.

I found him weeping on our back steps, cradling its shell, mumbling, “I can’t keep anything alive.”

He went back to work, while still filling our children’s lives with partying and pranks, skiing and longboarding, lessons and laughing.

Now he’s a beloved grandfather, who does magic tricks over FaceTime, but his traditional faith has never returned. He believes in God, meditation and different forms of spirituality. He no longer embraces the idea of an interventionist God, but rather that divinity is within us. Everything else remains a mystery.

Simon’s story

It was a warm Sunday in June 2002, when energetic, rambunctious Simon Leo Kofford ran ahead of his siblings on a family picnic and fell into the fast-moving Little Cottonwood Creek. It took a week for searchers to find his 4-year-old body.

“When one leaves at such a young age, everything gets frozen,” his mom, Cynthia Kofford, wrote at the time in an essay for Exponent II, a Latter-day Saint magazine for women. “My life now seems like a dream, with my life before as my ‘real life.’”

Within a couple of months, Kofford gave birth to her eighth child and became immersed in caring for the new baby and the other six. It took about a year, though, of being sad about Simon, she recalls, before “things got better.”

His death did hone her priorities and values.

“We were having a lot of financial issues, and I was lying awake at night worrying about them,” she says. “After we lost him, I realized just how silly all this earthly nonsense really is.”

Today, Kofford doesn’t think often of “that beautiful blond boy with the big smile,” but she does pray every day that she will be able to talk to him again someday. She wants to apologize for not watching him more closely and tell him how much they all have missed him.

Kofford’s Latter-day Saint faith and hope in Christ’s healing balm, she says, have sustained her. Simon is “just a sweet memory.”

The wife and mother

This anniversary seems monumental in some ways, and yet, no different than in the past.

We will gather for Camille Day as has been our tradition. We’ll eat pizza, tear up and remember those unsettling but joy-filled days, then go back to ordinary cares. Still, the time with my “cherry blossom” has shaped these years for me as none other.

I see parents who have lost children like fireflies in a black forest, briefly illuminating their shattered hearts. There is no net to catch them, but I see them everywhere — in the news, in my neighborhood, online or in church, stadiums or work. There is no secret code or sacred handshake but we manage to find one another.

I do not grieve daily, but there is a permanent sadness, knowing that something is missing like a joint or a limb in our family’s collective body.

Mike wrote on her headstone: “Camille was like a magic jewel, transforming everything it touches.”

Even now, that jewel continues to sparkle — polished by years of silent longing.