It would be all too easy for young burn victims to live life in the shadows. Burn Camp helps them build confidence to face the world.

Sunday, October 10, 2004

Regina Brett

On a cloudy late-August morning, children wearing oversized T-shirts with jeans or long, baggy shorts lug sleeping bags, backpacks, suitcases and duffel bags into the lobby of MetroHealth Medical Center. A chartered bus will arrive soon to take them away for a weekend away from parents who hover, strangers who whisper, children who tease.

Each child waits next to parents who are sitting quietly or talking too loudly, too openly, too eagerly about what happened to their kids. The children turn away. They pretend not to hear.

The parents study the children's scars. Some kids are missing eyebrows, ears, fingers, hands. The parents smile at those children burned the worst. Strangers usually stare then smile. But these parents' tight smiles hide something besides pity. Like the others, they want to know what happened, but they also wonder: Whose fault was it?

They need to know that other parents also picked the wrong baby sitter, misplaced a cigarette lighter, couldn't find a child through the smoke. Their guilt is written all over their own child's face, arms, legs.

One mother tells another how kids tease her son. Parents who overhear nod in understanding. The parents share war stories. The children don't. They shield themselves with silence.

Another mother talks about how grateful she is that no one can see her son's scars. "He's got a hidden burn," she says loudly. "He's lucky."

The unlucky surround her: The girl whose raw neck glows bright pink. The little boy missing half his left hand. Another girl in the corner with no hands standing on twin prostheses. The boy that fire seemingly split in half.

Two young boys smile when they recognize each other. They touch fingers in the air, relieved to see that each returned to the camp the staff at MetroHealth's Comprehensive Burn Care Center started in 1988. Local firefighters raise money through their Aluminum Cans for Burned Children foundation to support Burn Camp. This year, 30 campers signed up for the free four-day getaway.

Camp is held in late August so the kids can build their confidence to face classmates. There are no therapy sessions. No adults delve into "how it feels to be burned." The children are here to have fun with each other.

One mother hesitates to leave her daughter, the one who stands away from everyone. The mother looks brittle, as if she just learned bad news. She whispers to a girl with a short blond ponytail, a girl who is missing part of one hand. The girl walks over to the woman's daughter and asks, "When did you start school?" The mother smiles.

The bus pulls up. A teenager with long, silky blond hair carries a stuffed monkey. Her dad tries to take it. She won't let him.

One dad struggles to say goodbye to his daughter, who was burned 10 years ago. He and his wife were at a movie when they received the call. The sitter overheated a bottle of milk. It exploded on the baby. The girl stands by the bus and wipes a tear with the sleeve of her blue hooded jacket. Her dad holds his tears in but looks like the seams of his heart are tearing. He kisses her and steps away. He walks along the bus to find her at a window. He stands guard until the bus pulls away.

No parents are allowed at Burn Camp.

The bus' first stop is Geauga Lake amusement park, which is nearly empty. It rained all morning and most kids have already started school.

The children pair up with firefighters, who hug the kids or pat them on the back. Jeremy Brown and Chad Parker don't like rides so they walk around with Buzz Seiple, a firefighter from Rocky River.

On first glance Jeremy doesn't seem to have been burned. His bright orange hair and freckles stand out more than the pink zigzag scars that run down his shins.

No one can miss Chad's scars. Half of his face appears melted, while the other half is silky smooth. He wears an oversized Chicago Bulls jersey over a large white T-shirt and long, baggy black shorts. He grows his thick brown hair long enough to comb over the side of his head that is bald and to cover where his ear used to be.

Jeremy drags Chad and the firefighter into the gift shop. He wants a $2.99 giant dollar sign on a chain so he can look like a rap singer. The firefighter asks him to pick out something else. Jeremy chooses a huge silver cross.

Chad doesn't ask for anything. The firefighter tells Chad to select something, too. Chad chooses a silver chain with a small jagged red cross, something a biker might wear. Chad fastens the chain to a belt loop on his shorts.

When they leave the store, Jeremy, 13, holds the firefighter's hand. Chad, who's 17, holds onto a white bath towel he brought. He carries it the way a kid carries a mitt to a ball game.

As they walk through the park, kids gawk. Adults look, then look away, then look again. If Chad notices them, they offer a tight, brief smile that fails to hide the "Oh, my God" look in their eyes. Jeremy wants to stop and eat, then play in the arcade. Chad shakes his head and mutters, "Man, you said we'd go swimmin'."

Jeremy uses his arcade game tokens to win tickets he can exchange for more jewelry. Other boys from Burn Camp wander in to play the games. An older boy wins a cigarette lighter. The boys take turns examining it, mesmerized by its hidden power. The firefighter shakes his head.

As they near the water park, Jeremy and Chad stop to play a game on the midway. Chad throws dime after dime at the playing cards on the floor, ignoring two boys who lean on the counter for a better look at him.

When Jeremy and Chad enter the water park, the firefighter isn't sure how Chad will fare. For someone like Chad, water rides take more courage than getting on the wildest roller coaster: Boys are required to take off their shirts.

Chad walks off to put on swim trunks. He leaves both his shirts on. He stands by a row of empty beach chairs for a few minutes, taking a long, hard look at the wave pool filled with kids splashing. Some of them are girls his age.

It appears he's contemplating his first jump off the high dive. He studies the water, then suddenly strips off the red basketball jersey. Then he rips off his T-shirt and makes a mad dash to the water.

His entire left side is twisted and contorted. It looks like something took a bite out of his waist. His back bears a canvas of pink whorled flesh. He doesn't care. He runs into the water, way out near the biggest waves. He dunks and comes up smiling. He splashes and dives and bobs as though he's tasting a freedom only fish know.

When he's had enough, he comes back and walks around in his swim trunks. He's in no hurry to put his shirts back on. It's as if he conquered something out there. There's a glimmer in his brown eyes, a smile, a smirk. The essence of Chad is in those eyes, the mystery, the beauty of who he once was and who he now is. His eyes bear a message. They say to the world: The fire didn't touch me and neither do your stares.

As Chad lies on a beach chair, Chrissy Aitken, the girl with no hands, uses her stumps to maneuver her wheelchair to the edge of the water. The 15-year-old has already been on nearly every roller coaster. Now she confronts a bigger challenge. Her brown braids bounce as she yanks off her prosthetic legs, tan flesh-colored tubes attached to white sneakers trimmed in pink. She sets them on the pavement. Then she does the impossible. She walks into the pool.

Chrissy has no feet.

As the sun sets, the bus arrives at Burn Camp. The campers eat dinner, unpack and settle into cabins at CYO Camp Christopher in Bath Township, where they'll spend the rest of the weekend.

In the morning, the girls spill out of the cabins clustered around a half circle on the 165-acre park. Vicki Myers, 13, who has long blond hair, wears powder-blue eye shadow and headphones. She sits with her back to the girls at the picnic table. Vicki clutches her stuffed monkey as the girls gripe about who left the door open and let the mosquitoes in. They're crabby from staying up until 3 a.m. talking.

The girls trudge over to the dining hall, a short hike away, where men in aprons have taken over the kitchen. Firefighters from Willoughby cook enough food for an army. They call themselves part of the "burn family," a group made up of firefighters, doctors, nurses, social workers, volunteers and all the burned kids. The children come from the inner city and the suburbs. They are rich and poor; black and white; neglected and abused; loved and prized beyond measure. They have one common bond: The brand of a burn.

The kids say grace. Chrissy walks along the food spread out on a table. An adult volunteer scoops scrambled eggs and hash browns onto her plate. At the table, Chrissy presses her nubs together to hold a fork. She lifts a cup of milk then wipes her mouth on one forearm. A carton of milk sits unopened on her tray. It's a challenge she decides not to take.

The kids don't segregate into black or white, young or old, male or female. Vicki grabs a game and 15 kids clamber around to play "Catch Phrase."

Casara Muhammad's hands sing as she waves her arms and hollers her clues for everyone else to guess a keyword. The tall, thin girl with scars over most of her body adorns her wrists with silver charm bracelets. The group laughs so hard that they fall off the picnic benches in the dining hall.

Seane Mapson, who is 12, watches the game. She wears a white garment from her wrist up past her elbow. The elastic sleeve presses against new skin as it heals. Parts of her chin and neck are still raw and healing. She's only been out of the hospital for two months.

Chad stretches out on a picnic table bench like it's a couch.

The firefighters challenge the kids to a game of kickball. The boys from the inner city are distracted, fascinated by the groundhog holes behind second base. By 10 o'clock, the kids are too hot to play. They can't bear the heat. When you lose your skin and sweat glands, you can't sweat.

The kids split up to hike in the shade of the woods or swim. A volunteer shows up to set up arts and crafts. Dr. Richard Fratianne, who started Metro's burn center, invited the woman. When he first allowed her in the burn unit, he warned her, "You'll never see more pain on the face of the earth than in here."

Fratianne knows the importance of Burn Camp to these kids. He has seen their pain up close, the amputations, the disfigurements, the heartbreak. He knows their chances.

When a child is burned, doctors calculate the percentage of the body that is burned and then add that to the age of the patient. The sum determines the child's odds of survival. If the number is greater than 120, the patient will probably die.

Burn patients endure surgery and scrubbing to remove dead skin. The worst burns don't hurt at first because the nerves die. But removing healthy skin to graft onto the burned areas is painful because those nerves are alive. Even on morphine, burn patients can feel as if they're being tortured.

Doctors can transplant a toe to become a thumb. Build new eyelids. Grow new skin. But as a child ages, constant surgeries are necessary to release tightness and graft new skin to fit the child. The grafts cause more scars and more pain.

Fratianne believes these kids know who they are better than most adults. "Tragedy has a way of maturing you," he says, "if it doesn't destroy you."

The healing doesn't stop once scars form. The doctors and nurses don't want the kids to live a life in the shadows. They want to give them a suit of armor. They want the kids to build self-confidence to overcome the gawks and comments. That's what the children find here in each other: They see other kids with the courage to wear shorts or a swimsuit or to go out on a date.

Fratianne follows the children as they gather outside to tie-dye T-shirts in the driveway. They dip shirts into large pots of blue, purple and yellow dye. Chad takes a fork in his large, misshapen hand, spreads the shirt on the ground and stabs the fork in the middle of the fabric. Then he slowly twirls the fork. After the shirt swirls around it, he wraps rubber bands around it and dips it in the dye. When he's done, it looks like a big, bright snail of colors. The kids hang their artwork along a split rail fence. Each shirt bears an original design just as each child bears an original design, patterns and swirls of color found on no one else.

By late afternoon, the layers of clothing come off. Vicki walks around in a swim- suit. Seane takes the bandage off her arm. Chad wears one less shirt. The children have reached a comfort level with themselves and each other. They swim, canoe or kayak. The older kids play board games and flirt with each other. Jeremy goes turtle hunting. He's too busy to notice that the bandages covering raw pink flesh on his feet have fallen off. He finds a turtle and sets it on a paper plate holding puddles of paint. The turtle walks through it leaving footprints everywhere. Jeremy is fascinated by its shell, its protection from the world. He paints the shell purple and yellow and names the turtle Pimp Daddy Pimp.

Jesse Franklin, a seven-year-old who is new to camp, is more concerned about the blisters on his toes from hiking than the bandage on his left hand. A firecracker blew his fingers off.

If the kids didn't have scars, they'd look like any kids at any camp, having fun, being bored, suffering adolescent angst. One teenager sits with a towel draped over his head. "Girl problems," one boy whispers to another.

Seane wants to swim. She's unveiled her arm. Now she unveils her heart. She hands over her most prized possession to a girl she just met. "Can you watch this for me?" Seane asks.

"What is it?" the girl asks.

"A picture of my brother," Seane says, then runs off to swim.

The girl sets it under a plastic bag so it won't get wet. Chrissy sits next to her in the shade.

"Do you have any siblings?" someone asks Chrissy, trying to make small talk. But there is no such thing as small talk at a burn camp.

"I have two sisters," Chrissy says. "They didn't survive the fire."

At breakfast the next day, children brag about how late they stayed up.

Each cabin holds six bunk beds in the front and another six in the back. A sheet separates the two areas. Sleep is impossible if anyone is goofing around. The boys took the mattresses off their beds and made a giant wrestling mat. The girls talked.

By now they've learned who got burned how. Some don't remember the accidents, but they tell the story that someone told them, how they were scalded as a baby by a bottle, a bath, a cup of coffee.

Last year, the camp offered a makeup class to cover scars. This year, the camp found a volunteer to apply henna tattoos so they can show off their skin.

After breakfast, Kristina Haberek sits in the dining hall, drawing with Indian paste on arms and legs. Her pen leaves a gooey brown ink that fades to copper. Boys want dragons and Ninja symbols. Girls prefer flowers and butterflies.

Casara, 17, rests her leg on a folding chair as the woman draws the design. When Casara was seven, she sat too close to the fireplace. Her pajamas caught fire. She spent almost three years in the hospital and in rehab. Scars that look like lace cover her arms and legs. The burns changed the pigment of her skin from walnut to beige.

Casara has been coming to Burn Camp for 10 years. The other girls look up to her. At Lincoln West High School in Cleveland, she's involved in student council, cheerleading and basketball. She shows off her starburst tattoo and grins.

Chad chooses a Chinese symbol that means "fearless." When he hears that the older boys are doing the high ropes challenge, he heads out to join them. The high ropes course consists of seven gray utility poles connected by ropes and platforms 38 feet in the air.

Michael Strachan, in helmet and harness, climbs up metal spikes on the utility poles. Michael, who is 14 and lives in Eastlake, has brown eyes, short brown hair and looks clean-cut as an Eagle Scout. He refused to get a henna tattoo. He told the other campers it looked too much like a real tattoo.

Michael inches across a swinging bridge high above the grass. Then he hooks his harness to a giant swing and steps off the platform. "Ahhhhhhhh!" he screams and soars through the air.

Michael has been coming to Burn Camp for nine years. When he was five, he tried to refill a cigarette lighter. His mom was asleep when his pants caught fire. "My mom put me out with a pillow," he says. "I live with my grandma now."

He walks to the dining hall to join everyone for dinner. Nurse Lynne Yurko has just finished changing bandages. She works as the nurse manager in Metro's burn unit where most of these children arrived as burn patients.

New nurses find the work excruciating. They can't stop a child's pain and to heal the child, they have to cause more pain. The patients scream when nurses scrub off the dead skin, bathe the wounds, change the dressing and exercise joints stiff from bandages and scarring. Even unburned areas are scarred when harvested for skin. The skin from the head, buttocks and back can be cut off and transplanted. Sometimes, doctors place a small balloon under healthy skin to expand the area of skin they can use for grafting. After a shift, new nurses often leave the hospital, sit in the parking lot and cry.

The unit holds 14 beds and a third of the patients are children. Patients stay about one day for every percent of their body that's burned, longer if smoke damaged their lungs. Most of the kids are burned by accidents that could have been prevented chemicals stored under a sink, a firecracker left in a drawer, matches left by a couch, gasoline stored in a garage, pot handles turned the wrong way on a stove.

Scalds are the most common burns, followed by flame injuries. Many of the kids come from inner-city homes with no smoke alarms, alternative heat sources and bad wiring. The patients arrive black, charred, unconscious and smelling of burned hair and flesh. The nurses get to know them through their eyes, often the only part that isn't bandaged.

Patients fight, swear and beg to die. The pain is beyond words. For the nurses as well.

Nurse Yurko still can't forget the two-year-old she couldn't save. He was in a playpen when a sibling flicked a cigarette lighter. All she could do was help the toddler die.

She shakes her head to chase away the memory. She looks around the room and studies the faces of the children in the dining hall. She knows they've been shunned and teased. She knows they've been called crispy critters, freaks and monsters. She knows they're tired of operations, tired of hospitals, tired of pain, yet some need cosmetic surgery. They don't want to spend any more time healing. They want to get on with living.

"They lost the identity they had before the injury," she says. "Some would give anything to get that back.

"Here, they discover a different person, who they really are. Here, nobody is looking for that scar. This camp is a lifeline to them."

And to her.

At Burn Camp, the nurse had a chance to see the kids away from the pain. She comes to change dressings, but ends up being healed, too. Healed enough to go back and help the next charred child that comes into her unit.

"This is why I do my job," she says. "You know, when you're cutting off fingers, you wonder, what will their life be like?"

She looks around the room at kids laughing themselves silly. "They're happy."

After dinner, plans to play Capture the Flag and go for a hayride end with a thunderstorm. The kids don't care. They glue newspaper strips on balloons to make piatas. They play volleyball with a balloon. They play wild games of spoons. Chrissy plays a board game with a group of girls. She lifts a card from the stack with her stumps, then squeezes them around a tiny green marker to march it 10 steps around the board.

Seane, who is in seventh grade and has dark brown eyes and long black hair, watches. She spent three weeks in the hospital. "The worst is getting scraped," she says, cringing. She was making French fries with a friend when the grease on the stove started smoking. They carried the pot outside so no one would get hurt. When her friend tripped, the hot oil splashed Seane.

Megan Goodrich, 16, has already started school so she works on algebra homework. She lives in Seven Hills and plays soccer for Laurel. She burned her feet in scalding bathtub water. "I could see my skin floating around in the water," she says. "I don't know myself without the burn. I've lived with it for 11 years."

Jeremy, the red-haired boy with freckles, gathers up boxes and masking tape to make an entertainment center. He rolls foil into balls for knobs. Little boys gather around to help. They roll long strips of masking tape into a pretend cord and tape it on a wall.

Tashawna Walthaw, a 13-year-old in eighth grade at Charles W. Eliot school in Cleveland, has been coming to Burn Camp since she was five. She burned her neck, back and hands in a stove accident. When kids ask rude questions, like, "What's that on your neck?" she says she sometimes answers, "A contagious disease. If you touch it, you get it."

Vicki, with the long blond hair, also has been coming here since she was five. She was burned at 10 months old. She was in a highchair and poured her daddy's coffee on herself.

"Where are you burned at?" Tashawna asks her.

"You keep asking me that," Vicki says, defensive. "My scars have faded away."

Shameka McBride, 20, hangs out near the kitchen talking to the older kids. "It's like we grew up together," she says. She's been coming here for 12 years. She pulls her copper colored hair back and wears big silver hoop earrings. She lives in Cleveland and works as an assisted-living caregiver.

When she was seven, someone threw a home made bomb at her family's apartment. The window broke and the curtains caught fire. Her mom rescued her brother and yelled for Shameka.

"I panicked and hid. My mother couldn't find me," she says. A firefighter did. She spent three months in the hospital with burns on her arms, elbows, stomach and face. The burns turned the outgoing girl into a shy one. Kids saw the dark, leathery scars and teased, "Your mom left you in the oven too long," or called her a burnt piece of toast.

She cried and vowed never to wear shorts. When she turned 13, she summoned the courage to start wearing skirts. She can still feel when people stare, even if they're in back of her. She tells them, "It's not polite to stare. If you want to know, just ask."

She's still making her peace with her burns. "I still ask myself to this day, Why me? Why did this happen?" she says. "I figure God has something in store for me."

As the rain pounds on the roof, Chad with the beautiful brown eyes and silky face, leans on the table. He's the oldest of four siblings, likes basketball, swimming, video games and any music that isn't country. He goes to school at Education Alternatives. He was expelled for fighting, but doesn't want to talk about it.

Chad, who is back for his fourth year, was burned in a house fire when he was three. He's burned the worst of all the boys at camp.

"I had 42 surgeries so far," Chad says. He is teased a lot but says he ignores it. "It takes a lot to get on my nerves. I don't care what people think about me."

Besides the burns, he has scoliosis and needs surgery to correct his twisted spine. But right now he'd rather focus on getting his driver's permit.

Chad yawns but won't head off to bed. He doesn't want camp to end tomorrow. He wants to be a counselor when he turns 18. He likes that the younger boys here look up to him.

No one wants the night to end. The dining hall has turned into one large living room. Camp counselors light the fireplace to melt chocolate bars and marshmallows into sandwiches.

No one fears the flames.

Sleeping bags, backpacks, suitcases and duffel bags fly out of the cabins as the campers prepare to leave. The nurse hands out gifts of shampoo and shower gel. Chrissy tucks the gift in her backpack with her mouth.

The children meet in the dining hall for their last meal. David Camera, 11, who looks like a blond Harry Potter, is back for his third year. When he was six, a cigarette lighter leaked on his tank top. In one flick, his chest became a torch.

"The thing I like most here is everybody's burnt," David says. "I look around and I know how lucky I am. Almost everybody here has heard the doctor say, You could have died.'"

Then he tells the story campers pass down year after year, about the mummy in the woods. Little boys flock around and fill in the details they learned on their hike.

"It's true," David says. "He crawled into a cave and turned into a rock and if you kiss the rock three times "

"You get good luck," a boy adds.

All the boys went in the cave and kissed the rock. They wanted to leave with a bit of luck.

After cleaning off the tables, they wait for the bus to go home.

Chad wears the cross the firefighter bought him. Vicki cuddles her stuffed monkey. Jeremy puts on his rap jewelry. David has Michael's phone number in his pocket. Seane carries everyone's name on a sheet of cardboard tucked in her backpack. They vow to stay in touch, to e-mail, to call, to come back.

They want to go home. They want to stay at camp. They want home to be like camp. For four days, they have seen themselves in the mirror of each other's eyes and they liked the reflection. If only the rest of the world could see them that way.


Regina Brett is a Metro columnist for The Plain Dealer. She wishes she had the courage these children have. She may be reached at 216-999-6328 or through magmail@plaind.com.

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