Digital Extra: Gina Gauvin

All eyes were on Heather Gauvin, and she knew it.

Three days before her mother was to be discharged from the Rehabilitation Hospital of Rhode Island, Heather, her aunts -- Denise Agin and Renee Walton -- and a nurse friend of Walton's gathered at the hospital to prepare.

Heather would take on the lion's share of responsibility for her mother, who had been burned over most of her body and who had lost her left hand and part of her right in The Station fire. Heather would also care for her little brother and sister, ages 5 and 7. She knew the adults were all wondering whether this 18-year-old high school dropout could handle it.

When asked whether Heather was mature enough, Nancy Stejbach, the hospital's social-work coordinator, answered in a clipped tone that suggested she may have used the same words with Heather: "She's 18 years old and now she has a family to take care of."

Journal photo / Mary Murphy TOGETHER AGAIN: With great determination and spirit, Gina Gauvin,43, made it back to her children Joseph, who recently turned 6, Shayna, 7, and Heather, who is now 19. See the slideshow

Heather pulled on latex gloves and took a roll of bandages to wrap her mother's arms.

"What's the pattern?" Stephen Cammuso, the occupational therapist, prompted her. Heather indicated crisscross with her index fingers. She wound the bandage around her mother's right hand, which had just the stubs of four fingers remaining. Forming a herringbone pattern, Heather worked her way up her mother's arm.

"You want it tighter here and looser as you go up the arm," Caryn Tobiasz, the physical therapist, advised her.

"If you can do it in front of all of us," said Cammuso, "you'll have no problem at home."

Then, he said, as she finished, "It's perfect."

"You did great," said her mother, Gina Gauvin.

Heather responded with a joke: "That's the last time I'm doing it."

Now Cammuso put Heather's mother to work, instructing her to take her clothes out of the closet, take them off the hangers and then put them back.

"See that, Heather?" Walton said. "You don't have to put away her clothes."

The group moved to a kitchen where patients re-learn some of the skills of everyday life. Cammuso asked Gina Gauvin to open the refrigerator -- without touching the handle, since her refrigerator at home didn't have one. She leaned her shoulder against the side of the door and, pivoting slightly, used her weight to push it open. "At times like this," he told Heather, "you can say, 'Come on, Mom, you can do it.' "

"You're not her son," Heather replied. "She'll yell at me."

Gauvin said privately that she felt uncomfortable about her elder daughter taking care of her. "I want her to have a career," Gauvin said. "I want her to build her future and have fun. I feel weird about it. It's a weird feeling."

And Heather, in a conversation that afternoon, said that she was nervous about the new burdens she was about to take on. But mostly she evinced a kind of missionary zeal.

"I actually can't wait to do it," she said. "Nobody thinks that I can. . . .

"I'll have to put being 18 on hold," she added, revealing no regret. "If she can put 18 years into my life, I can give her some years of mine."

CARYN TOBIASZ felt proud. Surrounded by her colleagues, she stood in the lobby of the rehab hospital, and joined in the applause as Gauvin strode through -- wearing a white sailor's cap and those blue sneakers exactly like Tobiasz's -- on her way home. It was July 3, 65 days after Gauvin had arrived from the UMass Memorial Medical Center, devastated, immobile, in pain. And now she was leaving, on her feet, walking with strength and confidence -- and pride.

Gauvin's mother, Betty Catallozzi, two daughters and two sisters followed her as, beaming, she made her way to the front door. Gauvin had even agreed to let her sister Renee invite the media to the homecoming. That was a stride, too. Originally, she'd balked at even giving an interview. Then she agreed to an interview without pictures. And now, she was ready to appear before two television cameras.

Outside, a stretch limo awaited her, the ride from North Smithfield to Johnston donated by Destiny Limousine. Nancy Stejbach, the hospital's social-work coordinator, embraced her. Stejbach knew Gauvin had a long road ahead of her.

At the rehab hospital, the staff had encouraged her when her motivation had flagged. They had beaten back her fear of failure, persuaded her to try things she never thought possible. Now, without their prodding and support, would Gauvin keep moving forward? Her high spirits had amazed everyone -- but could she keep it up?

Heather turned to the staff and joked, "You can come pick her up every weekend."

Walking the red carpet.

In Johnston, the three-decker where Gauvin and her three children live is set back from the road, behind another building. In the asphalt driveway leading up to it, her friends and neighbors had spread a plastic "red carpet." She walked down it, stopping for hugs. Inside, the apartment was packed with well-wishers. Her sister Renee Walton, who'd organized the homecoming, poured warm champagne into a paper cup, put a straw in it and held it up for Gauvin to drink.

"Well," Gauvin said, "I finally got home from the Great White concert."

SEVEN WEEKS LATER, on Aug. 21, Heather Gauvin, strawberry-blond hair in a ponytail, was stirring a pot on the stove. She made dinner for the family every night.

"It's hard sometimes," she said. "I'm hoping it's going to get easier."

The hardest part, she said, was taking care of the little kids. She filled a pair of plastic bowls with macaroni and cheese, and offered some to her mom, who declined. Shayna, 7, and Joseph, 5, sat down at the round wooden table that takes up most of the kitchen. Heather plopped a spoon into each bowl and handed them out.

Joseph complained. "We already had this!"

"You said you wanted it."

He pushed the bowl away from him, with enough force to send it across the table. "See what I mean?" Heather said.

"Fine. Don't eat," she told Joseph. In seconds, he reached for the bowl.

Heather went outside on the stoop to talk. Asked what she saw in her future, she said she lived day to day, not daring to plan or hope for much.

"She was sleeping for a long time," Heather said of her mother, "and I was dealing with it. I didn't get a chance to sleep.

"If I'm in the middle of something, she asks me to do something. Then I'm in the middle of that, and she asks me to do something else. I end up getting aggravated with her." But Heather said that she kept it to herself.

But then, Heather also objected when her mother pitched in. "The other day the kids spilt something on the floor. She started mopping it up. She makes me feel bad when she does that."

Gina called Heather from the kitchen. "What do you need?" Heather asked.

"I decided to have macaroni and cheese."

Heather went in to serve her mother and to slide a cuff -- a bracelet of leather and elastic -- over her right hand into which a fork is inserted into a pocket in the leather.

Heather came back outside and remarked that her mother's astonishing good spirits had not abated.

"She's doing so well, it's weird."

But Heather said she feared a crash.

"Everybody has their cracking point," she said, "where they can't take it anymore. I know it will happen with her. I know it will happen with me."

And Heather admitted that Gina wasn't using all the skills she acquired in the hospital. "Maybe she's afraid. . . . One day she was carrying a thing of spaghetti and she dropped it." She hadn't resumed painting, nor she was able to bring her pet lizards home.

But Gina was keeping busy, nevertheless. Every morning, it was Gina who got the kids up and out the door. A nurse's aide came each day to help her wash and dress. And she was often out at physical therapy, or shopping with a friend or sister.

At around 8 or 9 each evening, after the kids went to bed and Heather gave Gina her medicine, Heather fled the apartment, to visit neighborhood friends or her boyfriend. But she complained that she was tethered by her cell phone, that it rang often. Can you get me a snack? Can you put the movie in the VCR?

One of Heather's aunts advised her to tell her mother to do it herself. She replied: "I'm her daughter. I can't."

'Mom, you have burns from the fire.'

IT'S SURPRISING to look at Gina Gauvin. Surprising, first, because you're shocked by the extent of her injuries, even if you already knew all about them. And surprising, too, because Gauvin appears oblivious to her scars, so that you almost forget them once you start talking to her.

Her little one, Joseph, used to look her over and catalog what he saw: "Mom, you have burns from the fire. You have some here and here, but not here." He would say it matter-of-factly, without distress.

This is what Joseph sees: Her left arm is emaciated, foreshortened, purple. Her right arm ends with the stubby "kitten paw" with fused-together fingers. Her upper arm bears a splotch of burned skin. Her upper chest has pink blotches of raised skin. A deep dimple at her throat marks where the breathing tube had been. Her back is a mottled red crisscrossed with stringy purple scars. Her left leg is purple and bumpy, while both lower legs have pink rectangles where skin for grafting was harvested. Her returning hair now surrounds her face with the flamboyant red that once defined her, but the back of her head is a smooth oval.

Her face, too, has bumps and blotches, especially along her jaw, where the skin looks melted. Her face didn't heal as well as the doctors had hoped. They grafted skin onto part of her left cheek and forehead -- and that skin looks good -- but they let the rest heal on its own. It was anybody's guess whether more grafting would look better or worse than letting it be, and she had a limited amount of healthy skin to harvest. To smooth out the scars, Gauvin will eventually get a clear silicone mask that she should wear for as many hours a day as she can stand for 12 to 18 months.

Gauvin seems unconcerned about her appearance, perhaps even comfortable in her own skin. Asked to pose for a family portrait on a warm September afternoon, she instructed the photographer not to show her bald spot, and then put on the white sailor's cap to cover it. But otherwise she hid little. She wore a short, low-cut sundress for the photo session. Surrounded by her children, she smiled like a beauty queen.

Gauvin says her skin hurts in many places, an achiness that she continues to treat with pain medication. Someone, usually Heather, has to give her the pills. Fingerless, she can't pick them up.

One thing she doesn't want to do anymore is light cigarettes. Gauvin says she'd always wanted to quit smoking, and her time in the hospital had finally forced it to happen. She says she won't resume the habit.

What does Gauvin miss most about her hands? Brushing her kids' hair. Making their dinner. Even washing her own hands. "I miss the little everyday things that I used to do."

THIS IS NOT the end of the story, not for Gina Gauvin, not for anyone injured in The Station fire.

All over Rhode Island, the injured continue to struggle. Some 30 of them still come in regularly to Rhode Island Hospital's outpatient burn clinic. Most are also undergoing physical therapy to improve range of motion and flexibility. In recent months, a few have needed reconstructive surgery on their hands or joints, and several others may need more surgery next year, says Dr. David T. Harrington, the surgeon who works with them.

A few, says Harrington, are suffering with sleep and mood problems -- but about half the clinic's patients have already returned to work. "I've been amazed at how resilient people are," Harrington says.

"Most people who look in from the outside think that this was terrible, and in many ways it was," Harrington says. "In many ways, it was thrilling. It's thrilling to see caregivers respond with the best of human nature, and it's thrilling to see patients reconstruct their lives and find something to continue to believe in. It's terrible and thrilling all at the same time."

Gauvin awed all who knew her in both hospitals where she labored to get better. "She is doing much better than anyone I've ever seen with this bad of a burn," says Dr. Gary Fudem, the leader of her UMass treatment team.

But the hardest part for Gauvin may lie ahead. Now it's life, not death, that looms.

Away from the structure and support of the hospital, still barely able to use her arms, with limited financial means, she's relying on a daughter -- now 19 years old -- who yearns for her own life, and on two sisters who have children and jobs of their own. With aid from The Station Fire Relief Fund and other donations, they are all managing -- struggling.

On Sept. 8, Gauvin went to UMass for a checkup and preoperative testing -- because she, too, has more surgery ahead. There, Janice Lalikos introduced herself to her former patient. "It's good to meet you," said the doctor who had cared for Gauvin the night of the fire, who had wept at the need to amputate her hand, who had drawn inspiration from her recovery. They had never before spoken.

Then Paul Savoie, the physician assistant who specializes in burns, sat down to talk with her. "You're doing a great job, you know," he said as he examined her.

He asked Gauvin to bend her left elbow. She could move it barely 5 degrees. "This is what we need to work on first, in order for you to use a prosthetic," he said. "First, we need to have better range of motion."

He explained that in the surgery on Sept. 12, skin would be grafted on to her elbow, and she would wake up in a splint. This should enable her to bend her elbow at least to a 90-degree angle.

Savoie examined the end of her left arm and pointed out that the bone is right under the skin, making the skin susceptible to breakage and bruising. "We may have to revise this bone right at the end -- make this shorter and bring the tissue around," he told her.

There is so much yet to do. Gauvin will probably come back for surgery every two months, depending on how much she wants done to improve her looks and functioning.

Gauvin admitted to Savoie that she hadn't been wearing the elastic body suit that compresses her scars and would improve their appearance. It was causing breakages in her skin and was unbearably hot.

Savoie didn't chide her, but pointed out that the skin on her arms, which had been kept wrapped, was much smoother than elsewhere. "Applying compression will make it go from a lumpy-bumpy state to a smoother state," he explained. Later, Savoie said that he knew few patients who could tolerate a body suit throughout the summer, and that nothing had been lost; she can still smooth out those scars.

Savoie unwrapped Gauvin's right hand and had her flex her thumb. He was impressed with the space that developed between her thumb and the rest of her hand, and told her that future surgery will make that hand even more useful. He told her he wants to get her fitted for a better body suit, and to go to Boston to be measured for a face mask.

So much to do.

Then she was off for preoperative testing in the laboratory downstairs. Walton, who had driven her to the hospital, accompanied her into the elevator. Gauvin once remarked that she'd regarded Walton, five years her junior, as her "baby sister" -- someone she took care of; but now their roles had reversed, and they had become much closer.

Walton, for her part, looked anxious. She said Gauvin needs more help -- that help had fallen off in the weeks since she left the hospital.

In the UMass hospital elevator, Gauvin and Walton talked about the days ahead. Gauvin would be in the hospital for four or five days. They hadn't known it was going to be that long.

Could Heather be persuaded to get the kids up and on the school bus in the morning? Perhaps if she knew they'd be home all day if she didn't do it? And what time was Joseph's father coming to get him on Friday night?

So much to worry about -- so much to do.

The sisters put their heads together, one with long brown hair leaning toward one covered by a white sailor's cap.

EPILOGUE: In late September, on Gina Gauvin's 43rd birthday, she and her three children moved to a ranch house in Johnston with a big, grassy yard, renting from a hairdressing client of her sister, Renee Walton. A recent visit there found the family happily settled in the new, more spacious surroundings. Joseph just celebrated his sixth birthday.

The Station Family Fund is providing a helper, Diane Gibson, who comes from 3 to 6 p.m. five days a week. Gibson makes dinner, cleans house and runs errands with Gauvin. This has taken a load off Heather, who is applying for jobs.

Senesco, the ship-building company that employs Gauvin's sister, Denise Agin, recently delighted Gauvin with a gift of a voice-activated laptop computer.

Gauvin says her surgery in September gave her a little more range of motion in her left arm, but she's taking a break from any more surgery until after the holidays. Meanwhile, nurse's aides continue to help her wash and dress each morning. And her pet lizards still haven't come home.

"I can't do it all myself any more," Gauvin says, a trace of frustration in her voice. "I have to be dependent."