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Chasing the light: A photographer faces frailty as she captures images of young lives in peril

 
Little Light of Mine founder and photographer Sheri Kendrick, center, photographs Maggie Hoyle, left, her husband Anthony DeLuna, and their son, Lincoln Avery DeLuna, 2, in their Tampa home Feb. 18, 2016. Maggie's sister, Katie Hoyle-Germann, stands on her toes to coax smiles as volunteer Tim Arruda takes video for the organization. Their son has X-linked myotubular myopathy, a rare genetic neuromuscular disorder that is characterized by muscle weakness that calls for his 24-hour care. Kendrick is a St. Petersburg photographer who takes photos of families with critically and terminally ill children for free.
Little Light of Mine founder and photographer Sheri Kendrick, center, photographs Maggie Hoyle, left, her husband Anthony DeLuna, and their son, Lincoln Avery DeLuna, 2, in their Tampa home Feb. 18, 2016. Maggie's sister, Katie Hoyle-Germann, stands on her toes to coax smiles as volunteer Tim Arruda takes video for the organization. Their son has X-linked myotubular myopathy, a rare genetic neuromuscular disorder that is characterized by muscle weakness that calls for his 24-hour care. Kendrick is a St. Petersburg photographer who takes photos of families with critically and terminally ill children for free.
Published April 28, 2016

ST. PETERSBURG

In the morning, after driving her kids to school, after twisting silk flowers into her strawberry hair, Sheri Kendrick slides a memory card into her camera and heads to Johns Hopkins All Children's Hospital.

She steers to the top of the parking garage, onto the roof, and always takes the sunniest spot.

For a while, she sits in her quiet car, trying to clear her head. Forget about her kids; they're fine. Forget about the rent; the landlord will understand. Forget about that fight with her boyfriend, that session with her therapist. For the next few hours, she has to focus.

She has no idea how many families will want her today, or what their children are suffering from. Some of the babies are waiting for heart surgery, some are trying to recover. Too many are dying.

"Hello! Great to see you! We have at least three today," a hospital worker tells Sheri in the lobby. Sheri hugs the woman and follows her to the elevator. "All girls. All on the same unit," the worker says. "Two are alert."

On the fifth floor, they get out: cardiac intensive care. Long hallways of rooms filled with blinking machines and beeping monitors. Frightened parents collapsed over cribs. Infants wailing.

Sheri knows the drill. She sets down her camera bag and walks to a closet, pulls out a yellow paper gown and ties it over her T-shirt, wriggles both hands into blue gloves, straps a white mask over her nose and mouth. Then she cleans her whole camera with alcohol wipes and shoulders her Canon 5D Mark II.

LARA CERRI | Times

Sheri Kendrick photographs Bailey Sims-Castro at the cardiac intensive care unit.

LARA CERRI | Times

Sheri Kendrick photographs Bailey Sims-Castro at the cardiac intensive care unit.

She doesn't ask about the children, what happened in the past or what their futures might hold. She needs only now. A few frames to immortalize their fragile lives.

Room 511 is first on her list. Outside the closed door, a young woman is weeping. Sheri says softly, "So you signed up for some photos?"

• • •

When you meet Sheri, she seems like one of those perpetually perky artists who wears bottle cap earrings and cat-eye glasses, and sees rainbows in the oily sheens of puddles.

She's 45 but looks a decade younger. A soft-spoken single mom who still gets along with her kids' dad. She croons '50s songs with her teenage son, twirls on the trampoline with her 8-year-old daughter and takes so many pictures of them, she has to pay them $2 each to not run away.

She seldom uses a flash and avoids fluorescent lights, preferring to chase sunbeams with her long lens. And she tries to avoid the shadows that inevitably seep in with her work. Not work. She calls it her calling.

LARA CERRI | Times

Little Light of Mine founder Sheri Kendrick, right, and volunteer Tim Arruda, left, wrap up a Little Light photo session.

LARA CERRI | Times

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Little Light of Mine founder Sheri Kendrick, right, and volunteer Tim Arruda, left, wrap up a Little Light photo session.

"It's intense for me. And I know it sounds strange," she says. "But for my own weird reasons, I really like doing this."

Sheri studied photojournalism at the University of South Florida and got a job jumping from planes to photograph skydivers. Then she became a preschool teacher.

At the holidays, she made portraits of each of her students to give their parents. Soon, other parents, aunts and uncles, neighbors were asking her to shoot their families. Sheri never charged until the preschool director told her she should.

She quit teaching in 1999 to open Enchanted Forest, an upscale portrait studio on Central Avenue in downtown St. Petersburg. Pregnant women spent hundreds of dollars for shoots. Parents paid $1,000 for Sheri to pose their babies.

Then, in 2006, Sheri got the call that changed everything. A woman had seen Sheri's ad in the Yellow Pages and wanted to know if she took portraits of elderly people. Sure, Sheri told her, she would photograph anyone. "Can you come to us?" the woman asked. "I don't think we can come to you."

So Sheri drove to the house and met the woman and her husband, a retired Navy man who was dying. They were so somber.

Sheri got uncomfortable and started cracking jokes. She wasn't sure why, or what she was doing. She was just trying to lighten the mood. She asked the couple to go outside, step into the sun.

"Hug each other," Sheri told them. "Go on, give him a kiss!" To her surprise, they did. Then the couple started laughing. Neither could remember the last time they had laughed. Even more than for the photos, they thanked her for that day.

A week later, at the man's funeral, Sheri saw all her photos, blown up into posters, surrounding the casket. The couple's last moments enjoying each other.

She felt so honored to have captured the end of that life and then thought about all the young people who would never hold on that long. She started volunteering with groups that photographed kids with cancer. But she didn't like all the restrictions. Don't send more than 10 images. Don't cry.

Who promises not to cry?

So she contacted All Children's Hospital, the Children's Dream Fund and Stepping Stones, a pediatric program at Suncoast Hospice. She said she wanted to volunteer to take portraits of terminally ill children. She had no idea how overwhelming her offer would become, how many families would want her help.

LARA CERRI | Times

Sometimes Sheri Kendrick has to wear gloves as she photographs critically ill children. Here she touches the hands of Holly Castro and her bedridden daughter, Bailey Sims-Castro.

LARA CERRI | Times

Sometimes Sheri Kendrick has to wear gloves as she photographs critically ill children. Here she touches the hands of Holly Castro and her bedridden daughter, Bailey Sims-Castro.

• • •

"Do you still want photos?" Sheri asks the young woman sobbing outside Room 511. The woman nods through her tears.

Holly Castro, 26, isn't sure she wants pictures of her daughter like this. The 2-year-old is unresponsive, hooked to a maze of monitors, waiting for a new heart. Holly doesn't want to remember her little girl being so sick.

Bailey had been fine, singing and dancing and finger-painting — until a virus attacked her heart and doctors told Holly her daughter might die.

What if Bailey never wakes up? Holly knows this might be the last chance to get something better than dark, grainy cellphone shots, a portrait by someone who knows what they're doing, photos she can blow up big. Just in case.

"Is your daughter Bailey?" Sheri asks, checking her list. Again, Holly nods. Sheri says, "Can you hold her?" Holly breaks back into sobs.

She hasn't been able to cradle her daughter for more than a month. Too many tubes, nurses told her, too many chances something could go wrong. "We can ask again," Sheri says.

LARA CERRI | Times

Sheri Kendrick photographs Bailey Sims-Castro, 2, in the cardiac intensive care unit at Johns Hopkins All Children's Hospital in St. Petersburg. Bailey was waiting for a new heart after a virus attacked hers. Doctors had told her mother, Holly Castro, that she might die, so Castro signed up to have Kendrick take photos of her daughter in case she did.

So Sheri talks to a nurse, who talks to a doctor, who says the girl would need a chest X-ray to see if it was safe to lift her. "Okay," Sheri says. "Let's get that X-ray."

LARA CERRI | Times

Sheri Kendrick photographs Bailey Sims-Castro, 2, in the cardiac intensive care unit at Johns Hopkins All Children's Hospital in St. Petersburg. Bailey was waiting for a new heart after a virus attacked hers. Doctors had told her mother, Holly Castro, that she might die, so Castro signed up to have Kendrick take photos of her daughter in case she did.

While they wait for the results, Sheri readies the room: dims the bright overhead lights, throws open the curtains so the sun can stream in, grabs a step stool so she can shoot over the crib railing.

The girl is curled on a white blanket, her dark curls spilling across the pillow, her eyes closed. Tubes are taped to her cheek and nose. "She's beautiful," Sheri tells Holly. "She looks a lot like you."

Sheri photographs Bailey in the bed, focusing on her face, trying to work around the wires. She has Holly hold her daughter's limp hand and shoots their entwined fingers. She takes off the girl's pink socks to photograph her toes.

A half-hour later, the nurse has good news. They can take Bailey out of the crib, but only for a few minutes. And Holly can't lift her. Four nurses have to help untangle the tubes, move the monitors and make sure Bailey doesn't shift too suddenly. A nurse spreads a blanket over Holly's lap. Slowly, they ease her daughter into her arms.

Sheri lifts her glasses, wipes her eyes and starts shooting, circling them, watching the light stripe the room, climbing onto the stool, crouching by Holly's knees.

Holly never looks up. Never smiles. Never gazes away from her daughter's still face. "Okay, I guess we should let the nurses put her back in bed," Sheri finally says. Holly's eyes well up. "You don't want to give her up yet," Sheri asks. "Do you?"

Holly shakes her head, hugs her daughter against her chest. "Thank you," she tells Sheri. "Oh, thank you. I didn't know if I'd ever hold her again."

Photo courtesy of Sheri Kendrick

Holly Castro, 26, holds her 2-year-old daughter, Bailey Sims-Castro.

Photo courtesy of Sheri Kendrick

Holly Castro, 26, holds her 2-year-old daughter, Bailey Sims-Castro.

• • •

She tries to separate herself from the sadness while she's shooting. Be present. Slow down enough to see life frame by frame. Just be a photographer.

But it's impossible not to see yourself in the parents, Sheri says. That easily could be you watching your child suffer, not knowing if your child will survive, not being able to do anything about it.

LARA CERRI | Times

Sheri Kendrick with her kids Molly Slomic, 8 and Jaeden Slomic, 14, at their home in St. Petersburg Mar. 7, 2016.

LARA CERRI | Times

Sheri Kendrick with her kids Molly Slomic, 8 and Jaeden Slomic, 14, at their home in St. Petersburg Mar. 7, 2016.

She can't cure the kids or give their parents hope. But she can capture meaningful moments, provide new perspectives and preserve their last smiles.

Last year Sheri gave up her portrait studio and started a nonprofit organization, Little Light of Mine, so she could solicit donations for her work. Friends helped her form a board of directors, made a website, ordered T-shirts, got grants. Other photographers volunteered to help shoot more sick kids.

And all these strangers have invited her into their sacred spaces, trusting her to document the most difficult times of their lives.

So far she has taken portraits for 80 families — of infants and teenagers with all sorts of ailments, of kids with their parents and siblings. She doesn't charge for the images. She gives them to the families so they will have something to hold on to.

"I know if my house was burning down, there's only three things I would get: my two children and their photographs," Sheri says. "I try to give these families what I would want."

After the shoots, Sheri sends the parents an email with about 100 high-resolution images. She never asks what happens to the children; sometimes it's better not to know. But a few moms have sent her thank you notes and shared their stories.

Two families asked her to come back to shoot their sons a second time. Seeing those boys struggle — and witnessing their strength — affected her in ways she hadn't expected.

• • •

When Sheri met Isaac, he was 6 months old and had never left All Children's Hospital. Born with half a heart, he was waiting for a new one. His parents were so worried about infection, they hadn't even let family visit.

But when the child life therapist told them a photographer was coming to take portraits, they decided to sign up. They could never take him to a studio for a professional sitting. Or afford one. "I wanted pictures of him," says Isaac's mom, Angie Ohmer, 35. "But not with all those wires poking out of his face."

Sheri made sure a doctor was nearby. She negotiated with the nurses to take off whatever equipment they could; she would be quick. It was the first time Angie had seen her baby's face without tubes.

As the nurses settled Isaac with his mom, he seemed to relax. Sheri shot quickly, zooming in and out. Her favorite frame shows Angie smiling at the camera. And Isaac's wide blue eyes gazing up at his mom.

Photo courtesy of Sheri Kendrick

Issac Ohmer, at 6 months old.

Photo courtesy of Sheri Kendrick

Angie Ohmer holds her son, Issac, at 6 months old.

Photo courtesy of Sheri Kendrick

Issac Ohmer, at 6 months old.

Photo courtesy of Sheri Kendrick

Angie Ohmer holds her son, Issac, at 6 months old.

"I had no idea the look in his eye, as he was looking at me," Angie says. "It was the first time I'd seen him so content."

"That baby changed me," Sheri says. "I was behind on my bills, feeling sorry for myself, and when he looked at me, he just lit up the room and made everything seem okay."

Sheri was sure Isaac would get his new heart and go home and live happily ever after, and that those pictures would be just a page in his baby book.

The next time Sheri saw Isaac was two months later. He had gotten a new heart, but other organs had shut down. His parents had to take him off life support. They had asked the therapist, could Sheri come take one final portrait?

"I know it sounds strange, but I wanted those last images," Angie says. "And we already had that connection with Sheri. She's just so calm and kind."

Sheri knew she was going to photograph a baby who had just died. But until she saw Angie, she didn't know it was Isaac. Nurses had taken out all the tubes. He seemed so peaceful, Sheri thought; he was no longer struggling.

Angie had given him a bath for the first time. Sheri choked back a cry, raised her camera and captured his tiny, closed eyelashes, still glistening.

Photo courtesy of Sheri Kendrick

The wristband of Issac Ohmer after he passed away.

Photo courtesy of Sheri Kendrick

The wristband of Issac Ohmer after he passed away.

• • •

That afternoon, Sheri began her ritual of sitting on the parking garage roof. She'd never seen a dead baby. She was too rattled to drive.

So she just sat there for more than two hours, watching the world whirr by — five stories below.

How could people still be walking around? How could drivers still be honking? How could those clouds keep floating by like nothing had happened?

She wanted to scream: A little boy just died! She wanted the world to pay attention.

When she finally went home that night, she hugged her kids so hard they must have realized something was wrong. For once they didn't wriggle away.

• • •

Lincoln DeLuna was not expected to live. When he was born, doctors told his parents not to bother with life support. He had a rare genetic disease that left all his muscles limp. He would never be able to eat or swallow, never be able to hold up his head, speak or even smile.

Doctors used to call it floppy baby syndrome. Even with feeding and breathing tubes, no one expected Lincoln to last a year.

Lincoln's mom, Maggie Hoyle, 28, longed for a professional portrait of her only child, something she could send her parents. But after more than $2 million in medical expenses, the family couldn't come up with $1,000 for pictures. And it was almost impossible to leave the house with Lincoln, with all his machines and monitors and IV tubes. Even if a photographer had given them a free session, they never would have been able to get him to a studio.

So when Maggie's friend told her about Little Light, Maggie called Sheri, who drove to their home in north Tampa in July, when Lincoln was 20 months old.

Sheri waited as Lincoln's mom suctioned his mouth, turned off his feeding tube, plugged in the portable breathing tube and pulled pants over his diaper for the first time. She had his mom carry him into their bedroom, where golden light created a halo above the headboard. She propped his parents against pillows, holding Lincoln in front of them. She waited until he stopped crying, then clicked away.

LARA CERRI | Times

Sheri Kendrick, center, photographs Maggie Hoyle, left; her husband, Anthony DeLuna, and their son, Lincoln DeLuna, 2, in their Tampa home in February. Maggie's sister, Katie Hoyle-Germann, stands on her toes to coax smiles. Tim Arruda takes photos for Kendrick's nonprofit organization, Little Light of Mine, which provides free portraits for families with critically and terminally ill children.

LARA CERRI | Times

Sheri Kendrick, center, photographs Maggie Hoyle, left; her husband, Anthony DeLuna, and their son, Lincoln DeLuna, 2, in their Tampa home in February. Maggie's sister, Katie Hoyle-Germann, stands on her toes to coax smiles. Tim Arruda takes photos for Kendrick's nonprofit organization, Little Light of Mine, which provides free portraits for families with critically and terminally ill children.

"Sheri was just so sweet with Lincoln. She let us take our time — almost three hours," Maggie says. "She acted like everything was normal."

A couple of weeks later, Sheri sent the email — 100 frames of Lincoln and his family. Maggie couldn't believe that was her son. Wearing a polo shirt and pants, with the tubes tucked behind his shoulder, he doesn't look sick, Maggie says. "He looks like a regular little boy."

Maggie's parents had lost another family member to this devastating diagnosis. So they worried incessantly about Lincoln. After getting Sheri's portraits, they finally saw the hope in their grandson's brown eyes. The next time they called, they asked to FaceTime with Lincoln. Maggie says, "It was like they finally saw he was in there."

In February, Maggie asked Sheri to come back to their home. She said, "Lincoln has something to show you."

Someone had blown up Sheri's portraits, printed them on canvases as big as doors — seven of them lining the living room, the faces life-sized. Maggie took down her favorite and held it over the crib. "Lincoln," she said, "show Miss Sheri which one is you." Slowly, laboriously, the boy lifted his right hand with his left and pointed. "He's learned to recognize himself," Maggie said. "Because of you."

LARA CERRI | Times

Sheri Kendrick's large canvas image hangs on the wall above Maggie Hoyle, left, who cares for her son Lincoln Avery DeLuna, 2, with the help of her sister, Katie Hoyle-Germann, in their Tampa home.

LARA CERRI | Times

Sheri Kendrick's large canvas image hangs on the wall above Maggie Hoyle, left, who cares for her son Lincoln Avery DeLuna, 2, with the help of her sister, Katie Hoyle-Germann, in their Tampa home.

Sheri took another set of photos that afternoon, even got Lincoln outside onto a comforter spread in a grove of palmettos. Since he can't move, she had to keep shifting around the shadows. "Now show her your new trick," Maggie coaxed, chucking the boy under his chin. "Stretch hard. You can do it!"

A tear seeped out of Lincoln's left eye, but he looked determined. Slowly, purposefully, he did what doctors had said he wouldn't be able to do, what his parents had been trying to teach him for months. He lifted the limp muscles in his mouth — and formed a slight smile.

Click. Click. Click … and it was gone. "You did it! What a big smile!" Maggie cooed. She turned to Sheri, "Did you get it?"

LARA CERRI | Times

Sheri Kendrick photographs Maggie Hoyle, left, her husband Anthony DeLuna, and her sister, Katie Hoyle-Germann, with Maggie and Anthony's son, Lincoln Avery DeLuna, 2, behind their Tampa home.

LARA CERRI | Times

Sheri Kendrick photographs Maggie Hoyle, left, her husband Anthony DeLuna, and her sister, Katie Hoyle-Germann, with Maggie and Anthony's son, Lincoln Avery DeLuna, 2, behind their Tampa home.

• • •

In the evening, after playing board games with her kids and tucking them into bed, Sheri Kendrick brews a pot of coffee, closes the scarlet drapes in her living room and slides the memory card out of her camera.

She sits at her desk in front of a wide monitor and turns on a little amber light.

For a while she listens to Neil Young, trying to clear her head. Reminding herself everything is okay. Her kids are great; the landlord lowered her rent. She and her boyfriend are talking. Her nonprofit board found a studio on Central Avenue to house Little Light of Mine. For the next few hours, she tries to focus.

Sheri Kendrick edits photos at her St. Petersburg home.

LARA CERRI | Times

Sheri Kendrick edits photos at her St. Petersburg home.

LARA CERRI | Times

A bit of artistry, finding just the right frames. Some editorial magic, erasing blemishes, altering light. A lot of empathy. She deletes shots that seem to show pain or distress, searches for those that give glimpses of connection, determination and hope.

She flips through 242 images of Lincoln and his family; in most of them, he's crying, or wincing, or both. It takes her an hour to choose 70 to tone and crop. Then she goes back through the take and finally finds them.

In three successive, precious frames, Lincoln is smiling.

Sheri is so relieved she got it, so excited to share it, she starts to email Maggie. But she decides to surprise her later, once she's done editing.

She clicks off her computer, the amber light, the music. And sinks into her sofa, swallowed by the dark.

She wonders why she does this, really. Why does she want to keep meeting these children who are in so much pain? Parents who are trying so hard to hold on to hope? Why put herself in this purgatory, trying to preserve life in the face of death?

She wants to help, sure. But there's also something important about being in such a precarious place, reminding yourself how vulnerable and precious life is.

LARA CERRI | Times

Sheri Kendrick with Lincoln's family in Tampa.

LARA CERRI | Times

Sheri Kendrick with Lincoln's family in Tampa.

Remembering that what matters most isn't money or fame; it's pillow fights, blowing bubbles, holding your daughter, hearing your son laugh — freezing those moments in photographs. So you can relive them forever.

Long after midnight, after the quiet has sunk in, Sheri pads down the dark hall to check on her children. Her son is dreaming in his tall loft. Her daughter is curled beneath her pink comforter with their old cat.

Sheri pushes back the girl's curls, overwhelmed by gratitude. Why should she be so lucky when so many others are suffering? Then the fear takes over. How long will her luck last? What if something happens to her children?

She stoops to kiss her daughter's cool forehead and stands there, listening to her breathe.

Epilogue

Bailey's heart healed. Four months after entering the hospital, Holly Castro got to take her daughter home. She cried when she saw Sheri's portraits, remembering how sick her little girl had been. She plans to put the pictures in Bailey's baby book so Bailey can see how strong she was.

After Isaac died, his parents moved into a new home. Before they unpacked, they hung the portrait Sheri took over the fireplace, the one from the day he was grinning up at his mom. "He's here with us," Angie Ohmer says. "Sometimes pictures are all you have of your child to keep him alive."

Lincoln had seldom been outside and had never had the strength to smile. So when Maggie Hoyle got the photos from Sheri's second shoot, she knew she had to blow up the image of her son propped between his parents, bathed in sunlight, finally looking happy.

Contact Lane DeGregory at ldegregory@tampabay.com or (727) 893-8825. Follow @lanedegregory.