Dr. Bahareh Keith examines Liam O’Lear. Diagnosed with William’s syndrome, his smile brightens those who meet him.
A hospital has a poignant atmosphere. It’s often one of hand-wringing, feverish praying and sipping scorching coffee from Styrofoam cups while waiting to hear some good news. But it’s also an atmosphere of hope, relief, and moments of sincere joy.
In children’s hospitals and pediatric wards, these characteristics are amplified immeasurably. There’s so much to gain; and so much to lose. It’s easy to let sickness become the sole narrative.
To give greater focus to the beauty and love that’s also very present in the day-to-day experience of children with devastating medical circumstances, photographer Stacey Steinberg started the Shared Hope Project. Through this photo series, Steinberg turns her lense to the lesser-seen moments of happiness and play that serve to brighten the lives of children with severe illness. “I photograph at the intersection of life and beauty,” Steinberg notes on her website. “And there is no place where these two worlds collide more than in the arms of a parent who knows that every day with their child is a gift.”
We’ve paired Steinberg’s important images with the collected stories of the faces within – the parents, family members and medical professionals who tirelessly seek better outcomes for our community’s most vulnerable members.
In the city of Gainesville, Super Liam is ready to take off and fight the malicious villain, Williams syndrome. Don’t be fooled by his small size. One flash of his smile, and consider yourself blown away.
“Liam actually smiled for the first time, and Stacey caught it on camera, and I would have just cried,” Jennifer Hazelwood O’Lear, Liam’s mother said. “It was the first time he smiled since all that time he’s been in the hospital.”
When Liam started to code during a simple procedure, he was airlifted to Shands. O’Lear said he began to turn gray, and he had numerous respiratory procedures done.
“At that time they said he had failure to thrive which at that time I thought, ‘I’m a horrible mother,’ because he wasn’t gaining weight, and we didn’t know then what he had yet,” O’Lear said.
With a disease like Williams syndrome, a developmental disorder affecting several parts of the body, it’s like fighting a hydra: when one issue is resolved, another one arises in its place. O’Lear was in a miserable place when Steinberg came into the picture.
“I got this diagnosis which crushed my world, yet I was trying to stay really positive. It was a happy day having her there for me,” O’Lear said. “She’s so positive and upbeat.”
After taking the photos, Liam was given the nickname Super Liam. Liam gave hope to those around him. In fact, it’s Liam whom O’Lear credits for her strength in the face of adversity.
“What makes you strong when you’re weak is seeing your child at their weakest moment makes you want to fight,” O’Lear said. “Liam has definitely made me a stronger person in my own personal life.”One look at at O’Lear’s Facebook profile, and Liam’s trademark ear-to-ear smile is unmistakable.
“That’s one thing about Williams, when they smile, they light up the world.”
Dr. Bahareh Keith
How does a parent approach serious topics such as cancer, death, or illness? It’s natural to protect children, but for Dr. Bahareh Keith, she keeps an open, honest dialogue with her kids.
Dr. Keith has always been exposed to death. After almost dying of malaria at a young age, Keith was inspired by the doctor that saved her. Since then, she always wanted to be a doctor. Stacey Steinberg’s Shared Hope Project was a good opportunity to show her kids what mommy does, including the saddest aspects of what it means to be a doctor.
When Keith had a patient with a slim likelihood of survival, she sat down with her 7-year-old son to talk about it.
“We talked about how it’s important to make the best of everything and being the happiest as possible and spending time with family and those kinds of things, which was [the patient] was doing in one of the pictures,” Keith said.
However, her younger children didn’t see the baldness or the IV tubes in these pictures, rather they saw children playing. To them, they were just being kids.
“Children are tough and they get through it. They find the play and the happy in almost situation. That’s why it’s hard to see them hurting,” Keith said.
From Keith’s perspective, cure rates improve with every passing year, but awareness for the cause is still needed. For Keith, Steinberg’s photos show a part of childhood illness that tends to be taboo, but it doesn’t diminish the importance of talking about the issue any more or any less.“Just seeing it has a tremendous power or realizing what it really is,” Keith said. “When there’s a good photographer, you don’t just see what’s happening, but you can feel it. That can be extremely powerful.”
The first time Stacey Steinberg took a photo of Grayson Irwin, he was crawling on the floor and munching on Goldfish amongst medical equipment. The second time Steinberg paid a visit, Grayson had a somber expression and sunken eyes. The third time, Grayson’s medical team surrounded him as he rang the bell that signaled the end of his chemotherapy.
Grayson was diagnosed with infant T-cell active lymphoblastic leukemia, and through a chance meeting at a park, Janelle Irwin and Steinberg decided to photograph Grayson’s journey. Even in his roughest state, Irwin focused on the journey and the good that comes out of it.
Grayson was diagnosed with infant T-cell lymphoblastic leukemia. During his medical journey Steinberg’s photography allowed Grayson and his family a sense of normalcy.
“He lost so much weight that his little bottom was just skin rolls. He looked like a Shar Pei puppy. It was just so precious,” Irwin said. “You can see his scar and see what his body’s gone through and you can still see the twinkle in his eye even though the rest of him doesn’t look like himself.”
Irwin found support from the community who offered to watch her other daughter or make them meals.
“The way people share love in times of hardships like this is extraordinary,” Irwin said.
Now Irwin gives her own form of support through her nonprofit called Tough as Nails, dedicated to giving comprehensive care to the family of those with chronic or life-threatening illnesses.
“It’s been very cool, with out-of-dark circumstances can come really great opportunities,” Irwin said. “By sharing your journey, its goes back to what Stacey is doing which is sharing hope.”
Dr. William Slayton
The man who sings acapella and enjoys time in his garden is the same man who saves kids.
“I treat kids with cancer,” said Dr. William Slayton, an oncologist at UF Shands. He says it so simply and matter-of-factly. It’s evident that oncology is more than his job; it’s his calling, or what he likes to call his niche.
“I have no regrets going into it,” Slayton said. “It’s being able to help kids and helping them to survive and helping them grow up to be neat adults.”
During her 11-month inpatient stay at UF Health Shands Children’s Hospital, Tiona (center) was only well enough to go outside five times. In the spring of 2015, she was feeling well enough to venture to the hospital courtyard, surrounded by supportive family and friends.
Not many people can say they have living proof of their work. In fact, one of Slayton’s former patients has grown up to be a medical student at UF.
Slayton said it’s important to tell these stories. “It’s to actually see that they’re like any other kids. The emotions are similar.”
When Slayton isn’t in the context of a hospital, he immerses himself in his hobbies or he looks to his family to keep him grounded. As a parent himself, Slayton empathizes with the families of these kids.
“She has a real gift. I think she recognized the beauty in our children and their families and the love that our parents have for our kids.”
A commonality amongst these families is loneliness; Slatyon advises how being a part of their lives, whether it be through volunteering or just being a friend can bring joy to your heart.
Slayton said, “[The photos] show just how beautiful these kids are, so how can you look away?”
The jangle of bells coming from UF Shands may equate to a sigh of relief for the parents of cancer patients. To signal the end of chemotherapy treatments, patients ring a bell in celebration. However, for Kim Boynton, it was bittersweet.
“The first year after chemo is the highest for relapsing. You have to stay on top of it,” she said.
Boynton’s 2-year-old daughter, Victoria, Tori for short, was diagnosed with high risk Leukemia. In August 2014, Tori was acting fussy and spots formed on her skin. Two doctor’s visits later, and she was sent straight to Shands.
Steinberg captures a milestone for Tori Boynton: her first birthday.
“It was like a massive whirlwind,” Boynton said. “Shands had diagnosed her, gave her chemo, blood marrow aspiration, blood transfusion, platelet transfusion. All that within 24 hours.”
To say that it was hard would be an understatement. For a month and a half, Boynton’s life was consumed by the hospital, taking her away from Tori’s two older sisters. Boynton says it’s tough trying to explain why she is gone so often.
“I didn’t want them to google and see what it’s [leukemia] about, so I went to sit down and explain it to them,” Boynton said, “I didn’t realize my 12-year-old at the time, she actually thought it was contagious.”
Despite the new norms that Boynton faces, she finds both strength and solace in Facebook support groups where she posts Tori’s photos.
“I think they don’t want to see it because it’s sad, and it’s unfair but it’s the reality of it. I personally try not to sugarcoat Tori’s pictures.”
When Tori undergoes chemotherapy, Steinberg is there to capture the sweeter moments. In one photo, Tori, face scrunched up and surrounded by birthday cards, wears a flouncy tutu for her first birthday.
“She shows it all, and I think that’s what I like most about it,” Boynton said. “In all honesty, you never know what the future holds. You have to capture them while she’s there with the possibility of not having her.”
Dr. Cole Dooley
“I never knew what it was going to be like to have a child with cancer,” said Dr. Cole Dooley, a pediatric anesthesiologist. His daughter Phoebe was diagnosed with a rare childhood brain tumor and was expected to live only nine months. He, like many other families in his situation, has worked with Stacey Steinberg to capture candid moments of their children.
“I think it’s shining a light on something that’s unpleasant. People don’t want to see it, but I think she captures it in such a beautiful way,” Dooley said.
Phoebe Dooley pets a pony with her dad, Dr. Cole Dooley. For the Dooley family, it’s moments like these that they treasure the most. “Kids don’t let their illnesses define them,” Cole said.
Dooley appreciates how these photos allow others to understand the perspective of families with chronic illnesses and the everyday struggles they undergo.
“I think what Stacey is doing, first of all, offers an amazing service to parents. Parents of chronically ill children have a financial, emotional, physical and mental strain that no one outside of their situation can ever understand.”
That’s the true beauty of Steinberg’s work; it’s her ability not only to show various facets of child cancer but to build memories for these families.
“She has photographed different milestones. They’re milestones that most people don’t want to have,” Dooley said. For Phoebe, her milestones range anywhere from having her birthday party to getting her last radiation treatment.
“We’re never going to be able to get away from remembering the 30 radiation treatments she had in 6 weeks, but fortunately with those pictures, I don’t think of those things,” Dooley said. “I just think of taking care of her, and I think of my wife interacting with her. It helps to focus on the beauty that’s involved, that the idea we’re a family, and that we’ll always be a family.”
Photography Courtesy of Stacey Steinberg
To see more of Steinberg’s work and read about the Shared Hope project, visit http://www.staceysteinbergphotography.com/.