Krishna Gurung and his wife, Leela, lost their 7-year-old son when he accidentally strangled himself with a cord at their home in Nepal. In Kevin's memory, Gurung has created an eco-friendly village near Kathmandu that provides education, health care and jobs to people with leprosy and physical handicaps.
When your child dies, the immensity of still being alive strikes at your core. Your focus shifts back and forth between the grief you have and the gift you had.
You are overwhelmed by sorrow and loss and a sense of what might have been.
At the same time, you are thunderstruck by the joy and beauty and richness your child brought into the world.
Bereaved parents find various ways to honor and remember their children. Here are a few such memorial organizations:
Kate's Kart –- Katherine Anne Layman, known as Baby Kate, died from a heart condition in 2008. She was 18 months old. Her family decided to honor Kate and her affection for books by starting an organization that provides books to hospitalized children in Indiana.
Carol's Kitchen –- Created in 1998 by Jim and Arlene Ragan in memory of their daughter, Carol, who died at age 29 in a collision with a drunken driver. The group they founded serves food to the hungry in Southern California.
Healthy Child Healthy World –- Founded by Nancy and James Chuda in 1991 to honor their daughter, Colette, who died of a non-genetic cancer at age 5. The organization, based in Southern California, tries to protect children from harmful chemicals.
You are awash with the deepest-aching pain. And yet you long to celebrate your child's brief, brilliant time on this planet.
That moment-to-moment tension, the never-ending whiplash to-and-fro between these two powerful instincts — the grief and the gift — drives you mad.
Some parents in deep grief have found a way to tamp down the madness a little, to go on living within this gut-wrenching dichotomy.
They have discovered ways to redirect some of the grief toward the gift — by creating a memorial that celebrates the memory of the child, and, at the same time, sustains and propels the child's spirit and hopes and dreams into the future.
It is a paradox, says Kenneth J. Doka, a professor of gerontology at the graduate school of The College of New Rochelle.
By creating memorial funds or foundations, says Doka, the author of a shelf-full of grief books, including Living with Grief: At Work, At School, At Worship, parents "are creating a bond with their children that goes beyond death."
Turning Grief Into Education
Joseph and Lorenza Colletti created that kind of bond.
They were devastated when they lost their 26-year-old son in 1995. "It's like a nightmare," Lorenza Colletti says more than 14 years later, choking back tears. "You go to sleep at nighttime — if you can even catch some sleep — and then you wake up in the morning and the nightmare begins all over again. And it's all over again, day after day.
"I mean, when your child is alive, you don't think of him 24 hours a day. But when he's gone, that's the only thing that's on your mind. And then you walk around and you see maybe someone wearing a cap that reminds you of your son, and you quickly turn — maybe that's him. Your mind plays so many tricks because it's so hard to really understand the depth of what has happened to you."
The accident was flukish. Lorenza's son, Marc Colletti — a marine biologist with the New York Department of Environmental Conservation — was surf casting in Long Island Sound. "The water was not even waist deep," Lorenza says. "And as he was walking from one area to the other within the water, trying to go fishing, there was sort of a depth that he wasn't aware of, or an undertow." Marc's chest waders filled with water. Though he knew how to swim, he was sucked under by the force and drowned.
"To this day it haunts me," Lorenza says. "It was just such a freaky accident, that's all I can say. If I dwell on it, it bothers me because he wasn't taking any chances. He wasn't being foolish. He wasn't out there when there was stormy weather. I don't know. I don't know."
Katja Heinemann/Aurora Photos for NPR
Lorenza Colletti holds a quilt she made to honor her son Marc, who drowned in 1995 at age 26. In Marc's memory, Lorenza and her husband Joseph now sponsor an annual field trip for New York middle-schoolers to learn about marine life and the environment.
Lorenza Colletti holds a quilt she made to honor her son Marc, who drowned in 1995 at age 26. In Marc's memory, Lorenza and her husband Joseph now sponsor an annual field trip for New York middle-schoolers to learn about marine life and the environment. Katja Heinemann/Aurora Photos for NPR
The Collettis turned their parental energy to creating a memorial for Marc. "Joe and I immediately knew that we had to keep his dream alive," Lorenza says. "We did some research and spoke to a number of people. What we wanted at first was to have a room dedicated to Marc in an aquarium — a hands-on for children to educate them about marine life. That was too expensive."
Then the Collettis learned of a marine education program at the Science Museum of Long Island in Manhasset. Using family funds, they arranged to fund an annual field trip for middle-schoolers. Every September, six members of the inner-city Boys & Girls Club of Oyster Bay-East Norwich are treated to a daylong boat trip to learn about marine life and the environmental impact of humans on the ocean and the planet. The Collettis hope the students will be inspired to carry on the work their son began.
"I've been a few times onboard," Lorenza says, "and it's so touching because then in the middle, in the center of the water, they stop the boat and they ring the bell for a minute of silence for Marc. And I know he's watching. And when he's watching I know that all these kids, they are loving the water. And loving what he loves. And his spirit is around in that moment. I just love it."
Finding Consolation In Community Action
You never, ever get over losing a child. The grief becomes part of your emotional DNA. You carry it with you like cancer. Ella Thompson understood that heartache.
In 1988, Ella's 12-year-old daughter, Andrea Perry, was raped, then shot to death in West Baltimore.
Photo courtesy of the Parks & People Foundation
Ella Thompson works at the Martin Luther King Jr. Recreation Center in Baltimore in the mid-90s. She worked at an after-school program as a living memorial to her 12-year-old daughter, Andrea Perry, who was raped and murdered. Thompson died at age 47 of a heart attack.
Ella Thompson works at the Martin Luther King Jr. Recreation Center in Baltimore in the mid-90s. She worked at an after-school program as a living memorial to her 12-year-old daughter, Andrea Perry, who was raped and murdered. Thompson died at age 47 of a heart attack. Photo courtesy of the Parks & People Foundation
Whereas the Collettis channeled part of their sorrow into education, Ella turned hers toward community action. Her response to deep grief was to help other at-risk children avoid her daughter's terrible fate.
First she volunteered at the Martin Luther King Jr. Recreation Center — less than two blocks from where Andrea was murdered — in her Franklin Square neighborhood known for drugs and danger. Then, for seven years, she served as the recreation center's director.
Her work among the bullet-riddled, drug-flooded streets of Baltimore became her living memorial to Andrea.
Ella was interviewed many times by Baltimore writer David Simon for his 1997 book The Corner. Simon, creator of hyper-realistic TV dramas such as Homicide and The Wire, recalls that Ella "talked at length about how she was at the rec center because that would honor Andrea and connected her with Andrea's memory. And at one point when I asked her if she thought she could, through what she was doing, ever heal completely, or something to that effect, she was overcome, and had to get up and walk to a corner of the rec. She faced the far wall so I wouldn't see her crying. But she was crying."
For Ella, Simon says, "her grief was profound and all-encompassing, it was forever."
Author Roger Rosenblatt shares his thoughts on losing his daughter who died at 38 from a rare heart condition.
In 1996, the Parks & People Foundation, a Baltimore nonprofit group, hired Ella to run KidsGrow, an environmental education program in West Baltimore recreation centers. "Ella loved the children that showed up at KidsGrow after school," says Jean DuBose of the Parks & People Foundation. "She made it her job to know them, where they lived, who their parents or guardians were, and what they were good at. Ella knew that this personal interest in their lives is what kept them coming back, and she knew that when they were in KidsGrow they were safe."
In 1998, Ella herself died of a heart attack — while driving a car filled with donated computer equipment. She was 47. But her work, and Andrea's dream for a better life, continues. Simon and others established the Ella Thompson Fund. Administered by the Parks & People Foundation, the fund supports inner-city initiatives such as KidsGrow. DuBose says that even though Andrea and Ella are gone, "the fundamental elements that were Ella's passion remain the same."
Stomping Grief Into Energy
These are some of the daunting challenges for bereaved parents: to actually care about the needs of the world at large and to attempt to carry on in the spirit of their lost child.
Deep grief is debilitating.
And yet in Kathmandu, Nepal, Krishna Gurung is trying somehow to find energy — literally — in his grief. Krishna takes cow dung and shredded wastepaper and creates briquettes for local people to use as inexpensive fuel.
He does this in the name of his late son, Kevin.
Krishna tells the story of how Kevin died, by accident, when he was 7 years old. "He was very active," Krishna says. "And he was playing with a cord that was hanging from the door. And he strangled himself to death. That was within a few minutes."
Krishna dreamed that someday Kevin would join him, side by side, working for the poor and disenfranchised. "I was hoping that he would be following the way that we are going," Krishna says. "And it didn't happen ... physically. So I took all of the responsibilities to establish an organization in his name."
Like parents who need to take physical care of their newborns, some bereaved parents take on the life's work that their dead children cannot do.
In Kevin's memory, Krishna has created an eco-friendly village that provides education, health care and jobs to people with leprosy and physical handicaps. In honor of Kevin, Krishna says, "we have got more inspiration, more family and other members being so cooperative. And we get now more energy to work in this field, which the entire world is needing now."
As one source of income, Krishna and other workers in the village gather up the wastepaper from the embassies and offices in Kathmandu. "We just collect papers and shred them by hand by the people, and that is soaked over the night," Krishna says.
The wet shredded paper is mixed with sawdust and cow dung, Krishna says. "Then next morning we just compress it in a handmade device, and the water is squeezed out and the briquette becomes harder. And we take it out for drying and it is ready to burn. ... It burns very well."
Every Day The Nightmare Returns
As Krishna Gurung, Lorenza Colletti and other parents who have lost children know, you do not stop being parents when your children die. Living memorials — a marine science program, community action, a sustainable eco-village — enable parents to continue the meaningful work they know their children would have done had they lived on.
For grieving parents, the loss of a child is an around-the-clock, unrelenting, inescapable horror show. Every new day's dawn is just another sorrow-filled reminder. As Colletti says, "the nightmare begins all over again."
By creating a living memorial, some parents find the strength to get out of bed every morning. And a reason to stay tethered to the everyday world.
They take the waste that is their deep grief, and they reshape some of it into fuel, into energy, into meaning. And maybe, even, into endurance.
Editor's note: NPR national correspondent Linton Weeks and his wife, Jan, lost their two sons, Stone and Holt, who were killed by a highway trucking crash in July 2009. In memoriam, Linton and Jan created The Stone and Holt Weeks Foundation.