A Place Closer to Mattie

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Mattie's Mom
Jeni Stepanek, mother of the late Mattie Stepanek, prepares to leave the condo she shared with her son. Mattie was a young boy whose poetry charmed Oprah, Jimmy Carter and the world. His mother, Jeni, is now dying of the same disease that claimed her son in June of 2004 as well as three more of her children.

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.