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Together despite all, glimpsing the distant finish

Three days had passed since the bombs went off.

Doctors had done what they could and left him to recover in a coma. She was sitting by his side when he opened his eyes. There was panic in them.

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She asked him: Who’s the most beautiful girl in the world? It was a question he had posed rhetorically and answered a thousand times.

Jenny May, he whispered. He remembered.

18 days after

THE THOUSANDS WHO THRUM through Massachusetts General Hospital, crowding corridors, searching for answers, have gone home. Marc Fucarile’s room in the Sumner Redstone Burn Center smells of the day’s comings and goings: Purell-rubbed hands and cookies sent by strangers who, not knowing what else to do, had packed offerings of solace into lidded tins.

In the bed, Marc is surrounded by a press of family. They came after hearing the day’s news: His remaining leg could be too damaged to save. They had amputated his right leg above the knee in the immediate aftermath. Now, there was talk of the left.

In the operating room earlier, doctors had peeled away bloodied gauze and found dead tissue around the ankle. They removed the blackened mass. Then they rewrapped all his injuries with new gauze — his singed back, his burned hand, the infected stump of his amputated leg, his broken knee, his shattered foot — and waited for Marc to wake so they could tell him that the foot was a bigger problem than they’d thought.

If the tissue didn’t stop dying, they would have to consider another amputation.

His family hugged and shed tears out of Marc’s sight. Then they entered the room and began urgently, frantically chatting. Anything to avoid the topic of the foot.

A social worker comes to Marc’s bed. She holds a thick folder and starts to talk with him and Jen Regan, his fiancée, about their 5-year-old son, Gavin. I can’t hear, Marc interrupts, pointing to his ears. His blown-out eardrums make everything sound like a watery underground tunnel.

Jen and the social worker step aside to talk. Marc can do only what he can do. But in moments like this — especially in a moment like this — Jen can’t help wanting more. She wants the old Marc who shared the load with her. Now she can’t imagine burdening him: She hasn’t told him that after Gavin smiled through his first visit to the hospital room a few days earlier, he had collapsed at the elevators, into her arms, sobbing.

Jen takes the social worker’s card, promises to follow up, and says goodbye. She makes her way to the foot of Marc’s bed. She hunches over and chews her thumbnail. There is a half-moon of skin where her nail used to be.

Marc’s floor nurse flits into the room and above the hubbub calls out: Your ICU nurses want to pop in and say hi. Marc is straightening, pushing his torso as upright as it can go without disturbing his foot dangling off two pillows. “I’m dying to see them, and I need to see them. Eddie? Eddie, do you want to let them know?” he says, dispatching his older brother down the hall to retrieve the nurses.

Jen stares in disbelief. Suddenly, for nurses, the old Marc is back? The charmer, the guy who has time for everyone and hates to disappoint anyone? She yanks her hair into a tight ponytail. Her eyes fix on him. He’s a flirt. She knows that. He can flirt with any nurse he likes. But if he has energy for them, why couldn’t he talk to the social worker about Gavin?

“What?” Marc asks her.

“You were extremely rude to the social worker. She doesn’t think so, but I do.”

“I can’t hear. I couldn’t hear the conversation.”

“I understand that, but everybody else can wait when it has to do with our son.”

“I haven’t been with my kid in two weeks! What do you mean? She was asking me questions about how he’s acting. I don’t know. I haven’t seen him,” he says. “Jenny, I’m useless to that situation.”

“It’s over. It’s fine. It’s done,” she says sharply.

There is quiet, and then Marc, his voice deflating, says, “Sorry, everybody.”

“It’s all right,” the gathered family murmurs in unison. They tilt heads downward, prayer-like, as if willing Marc and Jen to step away from this moment of discord that makes the stakes so painfully clear.

Yes, Marc had lived. Yes, he’d woken from the coma. But the bomb on Boylston Street that maimed him also shattered their calibrated divisions of labor and love, the daily minuet of a life lived together. He was like so many of the Marathon day victims, transformed in an instant from a face in the crowd to the face of the tragedy. Outside the hospital the talk was of heroes and strength and resilience. Inside, it felt like something else. The pain and uncertainty almost unbearable; patience tested to its absolute limit; love the final reserve. Would he make it? Would they?

“Kiss! Kiss each other right now,” Marc’s sister Stephanie says urgently.

“She’s cranky pants,” Marc says.

“She’s not cranky pants,” Stephanie says. “She’s amazingly strong.”

Jen offers a half-smile, but makes no move except to chew what remains of her ragged thumbnail.

* * *

FOR AS LONG as they can remember, they’ve known each other. They come from Irish-Italian families well-known in Stoneham. Jen’s father a captain in the fire department, Marc’s brother is on the police force. His mom waitressed at the Ninety-Nine over the line in Woburn.

The links between the Regans and the Fucariles interlace like a giant map of six-degree connections. Jen’s grandmother often took her along to the other side of town to visit Marc’s mother, whose daughter was best friends with Jen’s aunt.

Marc was older by four years. When she still had middle school bangs, he was a wide receiver for Stoneham High. He’d be around sometimes when she visited with her grandmother, but rarely for long. “Hey Jen,” he’d shout as he rushed out to meet buddies. Her eyes followed him out the door. Her crush was barely contained.

“I’m going to marry Marc someday,” she confided to Marc’s mother.

A decade later, on a summer night in 2006, Marc, then 28, went with a buddy to Hugh O’Neill’s in Malden. Across the bar, he noticed a girl with porcelain skin and crystal blue eyes. “Who’s that?” he asked his buddy. “That’s Jen Regan,” his buddy answered.

“Do you know who I am?” was his opening line.

Jen refused him her number. He got it from his friend. They went to a movie. She wore jeans and a sweatshirt, hoping not to look overly interested. She added heels at the last minute.

By nature, he was playful, on to the next thing before the first was finished; she was deliberate and focused. She was often burrowed in thought while Marc managed a crowd with wisecracks. She didn’t answer her phone when an unfamiliar number flashed. He always picked up.

Naturally, it turned serious.

They spent New Year’s together. A photo from the night shows their faces pressed together, his lips smudged with her pink lipstick.

Then unexpected news: She was pregnant. Marc wanted to get married. She worried that he felt obligated. Besides, it was too soon. She wanted to do it right: Meet, date, go on an island vacation, at the end of which, a ring would be proffered on bended knee. Her friends joked that she needed to wean herself from the romance movies she loved. Perhaps, Jen would say. Privately, she told herself she was allowed to have expectations.

Gavin was born Sept. 19, 2007. Two weeks later, they moved into the second floor of the duplex in Stoneham that had been her great-grandparents’. Her father lived on the first floor. Marc mounted ceiling fans and built a foldout table in the breakfast nook. She hung a print of sunflowers dancing against a mountain backdrop that reminded her of her grandmother’s house in Vermont.

Weeks were helter-skelter, juggling Gavin and two jobs, she as a cardiac nurse at Melrose-Wakefield Hospital and he at a Peabody roofing company, in charge of delivering rolls of sealant and five-gallon drums of glue to construction sites. Come weekends, they would climb into their car. They had no destination, just driving until they found something that struck their fancy. Life together wasn’t without challenges. But they loved each other, and that, they said, was what mattered.

Time to move

IN LATE MAY, an ambulance ferries Marc to Spaulding Rehabilitation Hospital. The building is days old. Months earlier, Marc had delivered the roofing for it. Now the building smells of paint and polyurethane and fresh starts. Marc’s room is spacious and light-filled. It looks out on boats bobbing on the water.

“I’m nervous,” Jen confides to Eddie that afternoon when they duck down to the cafeteria. The transfer to the new building should feel like progress. But it doesn’t. It feels like another unknown. Maybe because she doesn’t know the nurses here. “Don’t be nervous,” Eddie says.

Days blend into weeks, and by July, brown paper bags sit in the room’s corners bulging with gifts from strangers, hand-sewn quilts and woolen hats with tags that read “Knit with Love, Compassion, and Heart.” The bulletin board is covered with snapshots of Jen and Marc and Gavin, happy smiling moments from before the bombing, and perky cards written in the blocky print of his nieces and nephews.

Most nights, Jen sleeps in the guest bed, which no one bothers converting to a couch anymore. A rotation of friends and family take her place when she heads to her mother’s house to be with Gavin. He desperately misses his father. He is bewildered by his absence. “When will Daddy come home?” he asks over and over again. One night, he rips a Boston Strong poster from a door.

On the nights she’s with Gavin, she calls to check on Marc. Often she’s crying. “I’m worried about you,” she tells him.

“I don’t want you to worry, baby girl,” he says. “I’m fine.”

He isn’t. At night, the pain in his fractured knee is unbearable. But worse is his foot. The tissue around his ankle had stopped dying, but not before leaving exposed bone. He lies in bed restlessly drumming his stump, up and down. It lands on the sheets with a soft thud, like a tossed baseball glove. Often, panic attacks swallow him. Walls shrink, the world caves. Without the day’s distractions — friends to be entertained, a brave face for Gavin, physical therapists to be razzed — he is alone with his amputated leg and mangled foot, an endless parade of nurses poking and prodding him, and all this pain.

“It’s killing me,” he yells to Jen one night as midnight approaches. “I’m telling you. If the pain doesn’t stop, I’m going to tell them to take it off.”

Later, he awakes screaming from a dream. He was a guinea pig in an experimental trial.

The screams don’t wake her, but only because she hasn’t slept since she went to the federal courthouse four days earlier for Dzhokhar Tsarnaev’s arraignment. She keeps thinking back to the image of the accused bomber’s attorney patting his back to soothe him.

By day, the photos of their happiest moments before the bombing pegged to the bulletin board taunt. “Look at that,” Jen says to Marc’s sister, pointing to one where her arm is around Marc and her fingernails can be seen. They are smoothly filed, with glossy bases and tips painted pearly white.

“He’ll be home soon,” Marc’s sister Stephanie says.

It’s what everyone has been telling them. Doctors, friends, family. Focus on getting home and the rest will come.

It makes all the sense in the world.

What’s left behind

MORNING SUNLIGHT is pressing urgently into their apartment in Stoneham. The July day is going to be a scorcher. Jen takes a long, hard sip from a Dunkin’ Donuts iced coffee.

The center of the living room is jammed with half-filled moving boxes. There is no staying in the second-floor apartment. Jen’s dad had offered his first-floor apartment. But the doorways are too narrow for Marc’s wheelchair. On Craigslist, she and Marc had found an apartment in Reading with low-to-the-ground light switches, shower hand grips, and wide doors. So she is packing. Any minute, Marc’s friends will be here to haul stuff into trucks.

Beneath the topsy-turvy, the apartment has a time-stopped quality, like Miss Havisham’s mansion. Jen and Gavin haven’t slept in the apartment since the night before the bombing. A new Spiderman shower curtain that Marc bought for Gavin hangs from a towel rod, still in its plastic packaging. A bin of folded laundry sits in the living room. Her ironed hospital scrubs lay flat against the back of the couch.

In the apartment a few days earlier, she lay down on his side of the bed. It smelled like him.

She shrugs off the memory, standing straight as if to reposition herself in the present. “It’s not like he’s dead,” she says. “It’s just different. I get nervous that it won’t be him. You have to think: What will it be like?”

She stuffs a Halloween costume into a box, then yanks it out. Should she get rid of it? She stuffs it in again.

She hates moving. This is Marc’s job. He’s the one who tapes boxes, sweeps dust bunnies, sifts clutter. Most of the stuff is his anyway. He can’t throw anything away. He stores it all in blue-topped plastic bins. She calls him “bin-boy.”

A knock at the door. It’s Marc’s friends. They heave boxes into arms and march out the kitchen’s back door and down stairs.

A pair of boots peak out from behind the kitchen door. Marc had kicked them off there after his last shift that Friday night before the bombing. Their leather is strafed and pocked. He worked 60-hour weeks in these boots.

She picks them up. She pivots, as if to head back to the living room and the boxes, and then stops. The boots dangle in her hands at her waist, and she stands still, uncertain of what to do next.

The hundredth day

“ARE YOU MAD at the bombers, Marc?” a reporter asks.

Cameras fan across the width of Spaulding Hospital’s atrium. Microphones are rigged to a stand, and behind them Marc stands with crutches. He is wearing a New Balance shoe with an electric white sole that makes his shrunken leg look that much more fragile. On this day, the 100th since the bombing, Marc is going home, the last victim to leave the hospital.

Marc pauses. He’s nervous, but he’s a natural in front of the cameras. “I’m more mad at what they did to the families that they took their children from. I’m more mad at that than what happened to me. I’m here.” Reporters nod appreciatively. They make way for him and Jen and Gavin to pass through the sliding glass doors and into the late July humidity, then trail him as his car heads north to Reading.

A buzz. The apartment complex doors unlock. The camera crews follow Marc onto the elevator, down the hallway. As he enters the new apartment, waiting friends and family applaud. Cold cuts are loaded into sandwiches and chocolate sheetcake is cut. Are you nervous to be home? one reporter asks. “Jen’s nervous. She’s going to have two kids to take care of. I’m not going to be able to help out as much as I want.”

As the afternoon sun peaks, camera tripods are folded, and soon only a clutch of family and friends remain.

Marc sinks into the couch next to his grandmother, Mabel. “I’m finally home, Grammy,” Marc says. She pats his arm.

He leans back and surveys his new home: the high white walls, the track lighting, the echoing bathroom. Jordan’s had given them a voucher and just about all the furniture is new. The biggest pieces had been delivered that morning: a mahogany dining room set, an L-shaped sectional with an electric recliner that he needs for elevating his leg, and an entertainment unit, for now equipped only with a flat screen TV.

Marc’s phone is ringing. It’s the property manager returning his call. She understands his concerns, but no, the handicap accessible apartment does not include a space in the garage, only parking space outside. From the bedroom a toy is emitting a sound like the whine of a balloon being emptied. Marc holds the phone away from his ear. “Take that toy away! Whatever it is, take it away! . . . OK, well, get back to me please.”

“It’s like 100 degrees in here,” he says, laying his phone down. Fans are fetched. Blinds are drawn. “Is anyone else hot?” He massages his fractured knee. It’s time for his meds. He takes 49 pills a day. His mother is just back from CVS with a new batch. Two of the medicines cost $300 out of pocket.

“So much stress,” he says. It’s all too much.

“Turn on the TV!” Marc says. Someone finds the remote. “Can you turn it up?” he asks. A voiceover blares and the screen shows Aaron Hernandez being led into court. “He’s a gangsta,” Marc says. “The worst gangsta,” says his friend, Dave, sitting next to him. The two laugh, like kids watching cartoons.

“For you, honey,” his mother says, handing Marc a package that came in the mail. It’s the Zombie Slayer, a gag knife he ordered off late-night TV at Spaulding. It has neon trim and a comically menacing blade.

Jen sits kitty corner on the sectional. She’s reading the bill for his prescriptions, trying to figure out why insurance didn’t cover them. Her face is screwed into a frown.

To no one in particular, she says “I hate knives. I can’t even stand to wash them.”

Marc reaches for his crutches. “I’m going to CVS with Dave,” he announces. His mother offers to go for him. No, he says. She missed the point entirely. “I need to go with Dave.” Jen stands. “I’m leaving,” she tells him, hoisting her purse onto her shoulder. She has a 5:30 appointment for a spray tan; they’re going to a fund-raiser the next night for bombing victims and she wants to mask her paleness after a summer spent in hospital rooms.

The front door clicks. Jen is gone. Moments later, Marc flees their home as well.

Edge of the world

THREE WEEKS into being home, they are rarely there.

The refrigerator-mounted white board on Aug. 6 is typical: Monday: 11:30 a.m. Dr. Kwon @ MGH; Tuesday: 10 a.m. PT @ Peabody Spaulding, 2:15 p.m. Dr. Goverman @ MGH; Wednesday 10:15 a.m. Dr. Crandell, 11:15 a.m. Speech therapy, 3 p.m. Dr. Schneider @ Spaulding; Thursday: 9:30 a.m. visiting nurse; Friday: PT 10:30 a.m., OT 11:30 a.m.

Jen pads out of the bedroom shortly before 9 a.m. Her hair is combed into wet pleats and her skin is scrubbed to a taut sheen. Eyeliner seems to hold her eyes open.

She was up until 3 a.m. watching “Real Housewives” but not really watching. She was thinking: About how they are going to live, about the things she has to do. Like getting Gavin into therapy. He has been talking about the bombers. He had a dream and they looked like perfectly normal people. Only with backpacks. She thought about how Marc and she got into a fight. About stupid stuff. He feels like he can’t do anything. He’s frustrated. He’s swearing a lot and Gavin hears him.

At 4 a.m., Marc awoke screaming. His leg was shooting pain. They lay in bed willing sleep to come until the sun rose.

She wishes she could go to work, leave all this behind for the day. But she quit her nursing job. She wonders if writing in a journal would help. Or maybe there’s a book with advice that she could buy. “Like one for people who come home from the war — for their spouses.”

For now, Gavin’s lunch for preschool must be made. “Strawberry milk!” Gavin says. Jen pours the milk, and Gavin spills it on his shirt. “I got it,” Marc says. He wheels his chair to the bathroom with Gavin in tow. Moments later, he calls, “Jenny, the toilet is leaking!” Jen sighs and makes her way to the bathroom.

Marc wheels back to the kitchen. Before the bombing, he never would have asked Jen to fix a toilet. He was the guy who took care of things: fixed friends’ cars, cleared snow from his mother-in-law’s driveway, gutted his mother’s house.

Jen called him a man’s man.

Now, he’s the guy who has to be chauffeured.

He chafes in the passenger seat. Turn here! Get in the left lane! he orders Jen or Dave or whoever is driving. He yells unheard at other drivers. Everyone driving slower is an idiot; anyone driving faster is a maniac. Like George Carlin. Only, he’s not really joking. He fumes about handicap spaces taken by the able-bodied. “Guy with one leg here!” he yells out the window.

Crowds bother him. People bump up against him. Kids stare at the space where his leg was. Worse, their parents let them. Well-wishers corner him and tell him to keep up his spirits, don’t let the terrorists win. And then there are those who astound. At Olympia Roast Beef and Pizza, a place he used to go regularly on lunch breaks, a counter worker asks where he’s been. “I was in the bombing,” he shouts over the din of the midday crowd. “Oh,” she says.

He’s begun talking about moving to New Hampshire, away from the congestion. But maybe it’s the pain meds that make the congestion bother him. He will ask his doctors to reduce the meds. Jen doesn’t want him to. She says the nights are bad enough.

“I’m going to the porch,” Jen announces as she returns to the kitchen. It’s her cue to Marc to tend to Gavin.

“Whatcha doin’?” he asks Gavin, peering over at the pocket-size Minecraft video game that Gavin holds in his hands. The game is frustrating Gavin. He’s having trouble building his virtual world.

“Daddy, can you help me find my house? I need to destroy it,” Gavin says, handing over the game. Marc fiddles with the keys. Gavin fidgets. “I don’t even know what part of the world you’re in,” Gavin says impatiently.

“The edge of the world,” Marc says. “Where I usually am.”

* * *

WHEN THE ONE FUND’S $1.1 million arrives, the sum seems staggering. Then Marc reads in the paper that for a guy about his age, the lifetime cost of an above-the-knee prosthetic, which must be replaced every three to five years, will be, minimum, $1.5 million.

“So I need to come up with another half-million just to cover my legs,” Marc says.

Other expenses are piling up. Parking for his medical appointments is hundreds each week.

“I gotta get back to work, I gotta get going,” he says. But he can’t. Not yet. “I’ve got too much pain, too much medication.”

* * *

TRAFFIC IS BACKED UP in Longwood Medical area. A visit to get a second opinion from an orthopedist lasted longer than expected. The doctor told them that a gel insert for his shoe might relieve some of the painful pressure on the heel. A surgery could shave the bone and do the same. Neither was a sure thing, and down the line, he might find himself, once again, considering amputation.

And no, the doctor tells him, it would not be wise to curtail the pain meds.

Jen and Marc stare out windows. For the second time, a top doctor has told them what they didn’t want to hear: His foot, quite possibly, is permanently mangled and unfixable.

Jen’s phone rings. She lets it go to voicemail but immediately listens: There are free tickets for bombing victims to see Zac Brown, the country singer, at the Comcast Center. If they’re interested, she or Marc needs to call back and relay which day they prefer, Thursday or Friday.

Zac Brown sings one of Jen’s favorite songs. “Knee Deep.” They will go. But they can’t agree on the day. Voices rise. Tempers flare. By the time they reach the interstate, the day’s disappointment has been swallowed in a volley of words.

* * *

THEY KEEP DOING IT. Funneling their anger and frustration onto one another. People tell them they’re mad at the situation, not at each other. They know that. They know it in the way that everyone knows it. But in those moments, those cold, terrible moments when they feel alone with the disaster, the smallest things trigger.

One day, they join other bombing victims in Boston to meet veterans from across the country. Some are missing legs, some arms. Some have no limbs. The veterans share stories. They offer advice.

Marc and Jen listen closely. But they find themselves fixated on the veterans’ spouses. Marc thinks about how hard it must be for them. Jen imagines the plans they once had for how life, marriage, children would unfold. In a second, their plans were gone, too.

Yet, here they are, a year out, sometimes more, from their disasters. They are hanging on and making it work.

Six months gone

ONE WEEKEND they head north. Just the three of them. In the White Mountains, they stop at Santa’s Village. They ride the Yule Log Flume. The next day, on a whim, they motor to nearby Six Gun City. Jen rides the go-karts with Gavin.

A few days later, Marc’s prosthetic leg is ready for fitting. He hopes to wear it in a few weeks for his brother’s wedding, where he’ll be best man. Slipping his stump into the prosthetic, he stands. It’s painful, and he can take only uncertain steps. But for the first time since the bombing, he’s taller than Jen. He leans down and kisses her.

For Gavin’s sixth birthday in September they book the Stoneham Elks Lodge. On a clear-skied afternoon, the club’s wood paneling is garlanded in balloons and crepe paper and banners. A Teenage Mutant Ninja Turtle hulks among the crowd. Kool-Aid Jammers and Ninja Turtle party favor bags overflow on a fold-out table.

At the front of the room, Marc is DJing. Bill Withers, Stevie Wonder, and Marvin Gaye play.

He could have brought an iPod. But he insisted on having his old DJ equipment, which means he must man it. Which means once again Jen must assume a domain that had been all his before the bombing: making sure the party runs smoothly.

“Aggravated,” she whispers to a friend, motioning toward Marc.

The friend is an old friend. She knows Jen. She knows Marc. “That’s what he needs to be doing right now,” she says gently.

From the speakers, Motown is replaced by Zac Brown:

Gonna put the world away for a minute;

Pretend I don’t live in it;

Sunshine gonna wash my blues away.

Marc is playing the song for her.

She stands still, tilts her head back, and hums.

If you’d like to help Marc Fucarile and Jen Regan, their website is marcfucarile.com.

Sarah Schweitzer can be reached at sarah.schweitzer@globe.com. Follow her on Twitter @sarahschweitzer.

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