This article first appeared in the St. Louis Beacon, May 30, 2011 - Soft wisps of hair.
Upturned noses.
Warm little fingers and tiny toes.
Darcie Deneal takes her camera to area hospitals where she makes sweet portraits of subjects who are so very fragile -- but so very beautiful. Baby girls and baby boys who were born with the greatest of challenges and may have only so long to be with their mommies and daddies.
Deneal knows how to disguise a bandage and how to hide the many tubes attached to delicate chests and arms and legs. How to carefully position a sleeping preemie in the soft light of a hospital window.
Her goal is simply this: to memorialize the beauty of each life, whether it will be measured in years or just a few precious hours.
For 10 years, Deneal's nonprofit organization -- the Jeremy Project -- has given the gift of forever to families in the St. Louis area by providing portrait sessions for children with serious medical conditions.
Deneal and her volunteer photographers work with premature babies, some of whom will go on to lead long and healthy lives. But they also photograph children at the edge of life.
"I feel like I give families something that they will love -- the photographs -- but also something they will need down the road. Mementoes and memories,'' Deneal said.
A month-long photography exhibit opening June 6 at the Gallery of Contemporary Art at St. Louis Community College Forest Park will mark the project's anniversary and showcase portraits by Deneal and Martha Lafata who has volunteered her services since 2007.
'i Understand What They're Going Through'
The project is named for Deneal's 17-year-old son who died in a car accident in 1998. She said her "ordinary life" as a nurse and mother of two changed forever when Jeremy died. Photography had long been her passion, and she was struck by the fact that she would only be able to see her son in the photographs of his life.
"That was one of the things that really hit me hard,'' she said. "There would be no new pictures."
That feeling, combined with her experience as a nurse who saw families with gravely ill children, led her to found the Jeremy Project.
"I just saw that there was a need for people who wanted photographs but couldn't access traditional photography studios. And I thought, 'I am going to honor my son and help fill that need,' " Deneal said.
Her medical background is helpful because not every photographer is comfortable working with the critically ill in medical surroundings, she said.
There is no charge for the Jeremy Project's portrait sessions. The photographers volunteer all of their time, including the photo processing afterward. Diversified Lab donates the prints. Mailing is a major cost for the project.
In a given year, Deneal and her volunteer photographers will make portraits for about 70 families referred by St. John's Mercy Medical Center, Cardinal Glennon Children's Medical Center, St. Louis Children's Hospital and nonprofit groups that serve children with cancer. For the past three years, they have also taken holiday pictures of children with special needs on Mothers Day, Fathers Day, Halloween and Christmas at one-day events held at St. John's.
Families can request a portrait session through their hospital or by contacting Deneal directly. She or one of her volunteer photographers will come to their home, the hospital or a location chosen by the family. Deneal provides each family with prints, plus a disc, which allows them to make reprints.
"I just love working with the families,'' she said. "Since I've been in that position myself, I understand what they're going through. They're always very grateful."
Some of the hospitals make donations to the Jeremy Project, and there is one annual fundraiser, the Joey Wasser 5K Run, held this year in Overland on June 4. The Wasser family started the fundraiser after Deneal photographed their son Joey who had lived his whole life in the neonatal intensive care unit at St. John's.
'This is Your Pretty Baby'
The Jeremy Project works mostly with children, primarily because Deneal gets most of her referrals from local hospitals that serve children. But she will provide her service to anyone having trouble accessing photography because of medical conditions.
She recently photographed students with autism at a local school because studio sessions can be trying experiences for these children and for their parents. She has also photographed the terminally ill -- beloved grandmas and grandpas -- in hospice.
Deneal said she hopes the exhibit will demonstrate the beauty of such photographs, particularly for people who might be apprehensive about seeing portraits of the severely ill.
"The goal is to show people what can be done and that the photographs won't be hard to look at,'' Deneal said.
There will be no photographs of stillborn infants in the exhibit, although Deneal said these portraits are beautiful and important memorials for parents who see their babies for such a short time.
"I know that I can give them something that will help them tomorrow and the next day and 10 years from now," Deneal said. "Without those photos, six months or six years down the road, your memory isn't what it was. I can still look at photos of my own son and think, 'I forgot about that mole or that his nose twitched that way.' These photos can help you grieve."
Deneal said she can't begin to count the number of hours she has spent on the Jeremy Project. Her compensation, she says, comes from the personal fulfillment she gets in using her photography skills to help families through their losses.
"It's a bonus for me to be able to say, 'Here take this. This is your pretty baby,' " she said.
