A Place Closer to Mattie
Two years after losing the last of her kids, Jeni Stepanek and the disease that claimed them are moving on

By Darragh Johnson
Washington Post Staff Writer
Sunday, July 9, 2006

Their place is nearly empty now. The boxes are sealed, the walls blank.

The photos have all come down -- framed snapshots of Mattie J.T. Stepanek with the stars he called friends: Oprah, Jimmy Carter, Jerry Lewis, Larry King.

Down, too, came the boy's vast collection of books, and the rhyming dictionary and Latin text he kept next to his computer. His board games are packed away. So are his big green monster claws and rock collection, his baseball caps and favorite stuffed animal.

Tomorrow, his mother is moving. Jeni Stepanek is leaving the Rockville condo purchased with the proceeds from her son's best-selling "Heartsongs" poetry books and where, for Mattie's final years, they lived together until he died two Junes ago at age 13.

He died of the same muscle-wasting disease that had already claimed Jeni's three older children and was diagnosed in her 14 years ago. It has since bent her body into a wheelchair and left her arms nearly useless. She cannot lift a frozen dinner into the microwave. Only barely can she stretch to run a comb through her hair. When she tours the country, selling Mattie's books, she can sign them on his behalf, but she cannot lift them from her lap.

The latest book tour is winding down, and the movers will be coming Monday. Jeni has finally dismantled her son's room. Every other time she packed up and moved after a child died, "I still had a living child. This is really hard."

Yet this move promises to bring her son closer: Her new house faces the 26.2-acre Mattie J.T. Stepanek Park, dedicated earlier this year by the city of Rockville. A statue of the boy will be erected soon. People often tell her they can sense Mattie's spirit, feel his presence.

Jeni listens helplessly, even angrily.

Because all she feels, she says, is "Mattie's absence."

* * *

He was the nation's boy poet and celebrated peacemaker.

Former president and Nobel Peace Prize laureate Jimmy Carter eulogized Mattie at his Wheaton funeral, calling him "the most extraordinary person whom I have ever known." Mattie's doctor called him a cheerful prankster who "really did put apple juice in the urine cup and then drink it." Inside the child-size coffin draped with a blue United Nations flag, Mattie carried his remote-control whoopee cushion. Throughout the standing-room-only service at St. Catherine Laboure Catholic church, which seated 1,350 mourners, hundreds of leather-vested Harley riders and blue-uniformed firefighters twitched their jaws and tried to keep their eyes from tearing.

The poetry Mattie left behind is filled with a child's innocence and inspiration, with butterflies and rainbows, harbingers of hope. Sunset was not just his favorite time of day, his mother says, but a color unto itself. Mattie spoke publicly about global tolerance and implored world leaders to strive for peace. One of the two collections of his work published after his death is an exchange of e-mails with Carter called "Just Peace." Jeni has also launched a foundation to get his writings included in school curricula, and she stores his belongings in hope that they might someday be considered the relics of a saint.

It's all very exalted and mystical, a pious twist on modern American celebrity that offers, to a 46-year-old woman who has already lost four children, the possibility of immortality.

Her pain is not for public display. Only in the shower does Jeni find the "ultimate privacy" to grieve "without the whole world saying, 'Oh, Mattie's mom can't handle it.' " She calls these moments "my break points," and says, "I tend to fall apart every time I take a shower. I just cry."

She grew up in Prince George's County, an athletic girl who played soccer and softball and prided herself on batting first in the lineup. After graduating from Catholic University, she taught middle school, got married, went back for a PhD. Then her first child, Katie, was born Dec. 10, 1985, with serious disabilities.

Katie loved her mother's silly voice when she read "Milk and Cookies" aloud, and she died in July 1987, two months before Jeni Stepanek's second child, Stevie, was born. Stevie lived six months. Jeni remembers the doctors being astonished that such tragedy had happened twice, reassuring her that it couldn't possibly happen again. One year later, Jamie was born: another child on life support. Mattie, she says, was an accident, conceived when Jamie was still an infant. It was then, Jeni says, that she had her tubes tied.

A few months before his fourth birthday, when Mattie was 2, Jamie died.

Around the same time, Jeni discovered why each of her children had been born so sick: She carried in her genes a muscular dystrophy called dysautonomic mitochondrial myopathy. In 1992 she was diagnosed with the adult-onset version. The disease is freezing Jeni's muscles one by one; a weak leg, then a wheelchair. Failing neck muscles can make her head flop like a rag doll's. Her speech is thickening now. The tongue is a muscle.

She and Mattie suffered the indignities and assaults of this disease together. The symptoms are far worse in children. Mattie's fingertips would bleed, and an oxygen tank trailed him for much of his life. Jeni divorced, and relied on her best friend to help her care for Mattie as her own health faltered. She instilled a love of language in Mattie, jotting down the poetry she says he spouted from the age of 3. He went on to create five books of poetry and became a favorite on Larry King and Oprah.

King called the boy "unforgettable, inspirational," and when introducing Mattie in 2002 told his national audience: "Tonight, an hour that could well change your life. It changed mine." Oprah called him "magical" and wrote, "[M]any of us believed that when we were with him . . . we were witnessing the presence of an angel."

Even now, Jeni Stepanek cannot let go of the role that seems to make her happiest: Mattie's mom is not an increasingly helpless woman in a wheelchair. Mattie's mom is not lonely. Mattie's mom is not invisible.

Mattie's mom is the hard-charging head of the foundation preserving her son's mission, the delegator and decider who makes demands, gives orders and keeps strictly to the morning's agenda. Mattie's mom goes on book tour and stays with poet Maya Angelou and spends time with "Sailing" singer Christopher Cross. Mattie's mom has purpose.

So here she is, in the early-summer sunlight at the corner of 10th and G streets NW, wheeling her way to the Washington Book Expo, where she is scheduled to sign more books.

"Ms. Stepanek!" crows the deep voice of a stranger standing next to her. "I recognized you. I really enjoyed Mattie from Oprah."

Jeni looks up. The man is tall and carries three plastic bags on each arm, and a pouch hangs around his neck. His name is Armando Franklin, he says. He is homeless and lives in the District.

"I enjoyed him extremely," he continues, beaming at Mattie's mom.

"Oh," she answers as the light changes and the walk sign flashes. "It's nice to hear his name. Thank you."

Once inside the convention center, Jeni Stepanek and Mattie's service dog, Micah, veer through the crowds. People murmur, "That's Mattie Stepanek's mom." They line up to have their books autographed.

"To Rabbi Zinkow," says a woman from Ohio, asking for a special inscription. "To Zahir, my daughter, and Alim," says another.

Jeni is an introvert by nature; Mattie was the one who knew how to connect with people. Almost by rote, she asks each parent the same thing: How old is your child?

When a young woman from the Borders in Hagerstown arrives, Jeni suddenly lights up. The Borders in Hagerstown! she cries. Mattie spoke there!

The woman draws a blank but Jeni chatters on, reveling inside this memory as the line beyond her stalls.

Thank you, the woman finally says, seeming eager to move on, and Jeni nods, then quietly resumes inscribing the stack of books, writing things like, "Believe!" and "Peace is possible!"

After each exhortation, she signs herself: "Jeni, 'Mattie's Mom.' "

Becoming Roommates

Sandy Newcomb is a no-nonsense 51-year-old woman with strawberry blond hair, Jeni's dearest friend, the one who moved next door to help care for Mattie two years before he died. She met the Stepaneks when Jamie was on life support. The families became fast friends.

Sandy and her three kids celebrated holidays and birthdays with the Stepaneks. They vacationed together at the beach in North Carolina each summer. Sandy's children remember Jeni as the fun parent, the one who coached girls' soccer and made the team sing "Ain't It Great to Be Crazy" on the field at halftime, a ploy to psych out their opponents.

When Mattie went into intensive care, Sandy made an elaborate scrapbook to show the nurses how deeply embedded into each other's lives they are -- to show that, in a hospital wing where only "family" may visit, Sandy and her children qualified. Jeni is estranged from her parents and won't speak of her ex-husband. Sandy provided the family Jeni couldn't have.

Which is why Sandy bought the neighboring condo when Jeni and Mattie moved to Rockville. Mattie had lived with his mom in small, sometimes dark and moldy basement apartments throughout Prince George's County for much of his life. The condo was their palace. He exulted to Oprah about his "11 windows" and angled the hospital bed in his room so he could always see outside. Jeni Stepanek never thought she would move again.

Sandy took on much of the daily cooking, cleaning and laundry. They wanted to add a door between their condos. The fire code wouldn't allow it.

But now Jeni's disabilities are worsening. She has a harder time breathing and swallowing, her speech is slowing, and every year, she notices, her arms move an inch or two less.

Then, at the dedication ceremony for Mattie's Park last January, Jeni remembers how she gave a speech and pointed to a house immediately across the street and jokingly said, "That's the one I want."

A few months later, around Easter, Sandy called Jeni. "Ohmygosh," Jeni remembers hearing Sandy say. "Our house is for sale."

When Sandy talks about moving in with Jeni, she makes light of what being roommates might mean, joking how Jeni's early-bird buoyancy makes nocturnal Sandy cringe and urge: "Shut up! Sit still! Don't talk to me!" She doesn't talk about what is really happening.

She is signing up to watch her closest friend die.

They put their condos on the market, and one afternoon in May, real estate agent Mike McGrath stops in for clutter inspection. Most of Jeni's knickknacks have been packed away, but she cannot bear to undo Mattie's room, even as she worries about voyeuristic buyers slipping his belongings into their pockets.

"I don't want any souvenirs going," she tells McGrath.

"There's a lot of pilferable stuff here," McGrath agrees. "But we won't let that happen."

At first, Jeni and Sandy don't get much traffic through their condos and Jeni starts getting anxious. During one morning meeting of the Mattie Stepanek Foundation, Jeni frets, "Now if only we'd sell our houses!"

"Have faith," foundation treasurer Tom Curtis tells her.

"I have faith," she answers sharply.

"Have. Faith," Curtis repeats, slower this time and leaning closer to her. He believes, he says later with sincere reverence and awe, that this whole Mattie thing "has a life of its own: The statue. The park. The work we do [spreading Mattie's message of peace] in the schools. And her buying the new house. We're not in control of this." The implication is that someone else -- Mattie? God? The Catholic saints to whom Jeni prays? -- is in control.

Sure enough, a few weeks later, Jeni sells her condo: She gets an offer on June 22, the second anniversary of Mattie's death; they settle on July 17, Mattie's birthday. "So I know ," she says now, "this is all part of the big plan."

And though Jeni may not feel her son's presence, she believes in her son's power. There is a movement, she says, to nominate her son for sainthood, and she is carefully storing everything he owned, in case this happens and the church requests his relics.

But for sainthood, it must be proved that Mattie performed miracles. She's got one, so far, that she can give to the committee that decides these things -- something about a stranger with a very sick son in the hospital, and the woman thought of Mattie, and she prayed, and she heard Mattie's voice assure her that everything would be all right. Her son inexplicably survived, Jeni says, and she has promised to give Jeni copies of the medical records.

Yet "saints are not magical beings. Saints are strength. They are a human face to strength," Jeni says. And the greatest strength that Mattie has provided, she continues, is helping people change how they see their lives: "My son inspires people to have hope when hope seems absent."

Sunset

At the new house, Jeni plans to unpack only a few of Mattie's belongings. She will subsume his library of books into hers. In a few years, she will give his Legos to Sandy's granddaughter. Tad the tiger and the puppets Mr. Bunny and Mr. Bear will get unpacked. There will be shelves, and Jeni might display other belongings, but it won't be Mattie's room, she insists. "I will not create a shrine to him."

This will be her last move.

The new house is a dark, elegant gray with red front door and shutters, white trim and a white picket fence. The grassy backyard looks like a place for children to play. The front porch is wide, perfect for Jeni's wheelchair, with a view of the park, where she can see "what resulted from his life."

From here she will sit in the dying light and watch the sunsets flame behind the silhouette of her son.