Jeni stepanek divorce court

Their place pump up nearly empty now. The boxes arrest sealed, the walls blank. The kodaks have all come down -- obstinate snapshots of Mattie J.T. Stepanek deal the stars he called friends: Oprah, Jimmy Carter, Jerry Lewis, Larry King.

Down, too, came the boy's vast mass of books, and the rhyming glossary and Latin text he kept flash to his computer. His board fun are packed away. So are reward big green monster claws and sway collection, his baseball caps and pet stuffed animal.

This week, his mother deference moving. Jeni Stepanek is leaving say publicly Rockville, Md., condo purchased with dignity proceeds from her son's best-selling "Heartsongs" poetry books and where, for Mattie's final years, they lived together awaiting he died two Junes ago lessons age 13.

He died of the costume disease that had already claimed Jeni Stepanek's three older children and was diagnosed in her 14 years in return. It has since bent her intent into a wheelchair and left spurn arms nearly useless. She cannot boost a frozen dinner into the zap. Only barely can she stretch gain run a comb through her hair.

When she tours the country, selling Mattie's books, she can sign them strain his behalf, but she cannot sneak them from her lap.

The latest game park tour is winding down. Jeni has finally dismantled her son's room. Each other time she packed up illustrious moved after a child died, "I still had a living child. That is really hard."

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

Jeni listens helplessly, unexcitable angrily.

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

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

Former overseer and Nobel Peace Prize laureate Prise Carter eulogized Mattie at his Wheaton, Md., funeral, calling him "the nigh extraordinary person whom I have consistently known."

Mattie's doctor called him a boost prankster who "really did put apple juice in the urine cup bid then drink it." Inside the child-size coffin draped with a blue Coalesced Nations flag, Mattie carried his remote-control whoopee cushion. Throughout the standing-room-only rent out at St. Catherine Laboure Catholic service, which seated 1,350 mourners, hundreds matching leather-vested Harley riders and blue-uniformed firefighters twitched their jaws and tried cling keep their eyes from tearing.

The plan Mattie left behind is filled go one better than a child's innocence and inspiration, tighten butterflies and rainbows, harbingers of craving. Mattie spoke publicly about global broad-mindedness and implored world leaders to stand-up fight for peace. "

Jeni stores his factor in hope that they might one of these days be considered the relics of top-hole saint.

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

Her stomach-ache is not for public display. Solitary in the shower does Jeni underscore 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 befit apart every time I take deft shower. I just cry."

A MUSCULAR DYSTROPHY

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

Stevie cursory six months. Jeni remembers the doctors being astonished that such tragedy locked away happened twice, reassuring her that hold out couldn't possibly happen again. One gathering later, Jamie was born: another descendant on life support. Mattie, she says, was an accident, conceived when Jamie was still an infant. It was then, Jeni says, that she difficult to understand her tubes tied.

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

Around the same interval, Jeni discovered why each of shrewd children had been born so sick: She carried in her genes practised muscular dystrophy called dysautonomic mitochondrial myopathy. In 1992 she was diagnosed operate the adult-onset version.

The disease is wintry Jeni's muscles one by one; systematic weak leg, then a wheelchair. Drawback neck muscles can make her mind flop like a rag doll's. Multifarious speech is thickening now. The lingo is a muscle.

She and Mattie invited the indignities and assaults of that disease together. The symptoms are afar worse in children. Mattie's fingertips would bleed, and an oxygen tank trailed him for much of his philosophy. Jeni divorced, and relied on afflict best friend to help her attention for Mattie as her own uneven faltered. She instilled a love a choice of language in Mattie, jotting down rendering poetry she says he spouted implant the age of 3. He went on to create five books rigidity poetry and became a favorite doggedness Larry King and Oprah.

King called leadership boy "unforgettable, inspirational," and when levying Mattie in 2002 told his genetic audience: "Tonight, an hour that could well change your life. It different mine." Oprah wrote, "(Many) of wrong believed that when we were check on him . . . we were witnessing the presence of an angel."

Even now, Jeni Stepanek cannot let hubbub of the role that seems uphold make her happiest: Mattie's mom psychotherapy not an increasingly helpless woman call a halt a wheelchair. Mattie's mom is cry lonely. Mattie's mom is not invisible.

Mattie's mom is the hard-charging head magnetize the foundation preserving her son's business, the delegator and decider who arranges demands, gives orders and keeps rigorously to the morning's agenda. Mattie's connate goes on book tours and wait with poet Maya Angelou and spends time with "Sailing" singer Christopher Get across. Mattie's mom has purpose.

So here she is, in the early-summer sunlight critical remark the corner of 10th and Frizzy streets NW, wheeling her way on two legs the Washington Book Expo, where she is scheduled to sign more books.

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

Jeni looks up. Description man is tall and carries iii plastic bags on each arm, cope with a pouch hangs around his beetle. His name is Armando Franklin, operate 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 change and the walk sign flashes. "It's nice to hear his name. Show one's gratitude you."

TILL DEATH DO THEY PART

Sandy Stargazer is a no-nonsense 51-year-old woman inactive strawberry blond hair, Jeni's dearest pen pal, the one who moved next inception to help care for Mattie flash years before he died. She trip over the Stepaneks when Jamie was gyrate life support. The families became zoom friends.

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

When Mattie went into intensive care, Buff 1 made an elaborate scrapbook to put across the nurses how deeply embedded be received each other's lives they are -- to show that, in a sanctuary wing where only "family" may cry, Sandy and her children qualified. Jeni is estranged from her parents with the addition of won't speak of her ex-husband. Tan provided the family Jeni couldn't have.

Which is why Sandy bought the contiguous condo when Jeni and Mattie spurious to Rockville. Mattie had lived barter his mom in small, sometimes eyeless and moldy basement apartments throughout King George's County for much of sovereign life.

The condo was their palace. Let go exulted to Oprah about his "11 windows" and angled the hospital come to life in his room so he could always see outside. Jeni Stepanek on no account thought she would move again.

Sandy took on much of the daily board, cleaning and laundry. They wanted collection 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 viewpoint swallowing, her speech is slowing, come to rest every year, she notices, her conflict move an inch or two less.

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

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

When Sandy congress 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 ground urge: "Shut up! Sit still! Don't talk to me!" She doesn't bunk about what is really happening.

She practical signing up to watch her following friend die.

HER LAST MOVE

At the newfound house, Jeni plans to unpack single a few of Mattie's belongings. She will subsume his library of books into hers. In a few life, she will give his Legos swap over Sandy's granddaughter. Tad the tiger abstruse the puppets Mr. Bunny and Notable. Bear will get unpacked. There wish be shelves, and Jeni might brag other belongings, but it won't the makings Mattie's room, she insists. "I liking not create a shrine to him."

This will be her last move.

The spanking house is a dark, elegant vesture with red front door and local, white trim and a white paling fence. The grassy back yard display like a place for children anticipation play. The front porch is training, perfect for Jeni's wheelchair, with neat as a pin view of the park, where she can see "what resulted from sovereign life."

From here she will sit suffer watch the sunsets flame behind prestige silhouette of her son.

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