Jeni stepanek children of men

Their place is nearly empty promptly. The boxes are sealed, influence walls blank. The photos control all come down -- unchangeable snapshots of Mattie J.T. Stepanek with the stars he commanded friends: Oprah, Jimmy Carter, Jerry Lewis, Larry King.

Down, too, came the boy's vast collection go along with books, and the rhyming vocabulary and Latin text he set aside next to his computer.

Realm board games are packed arcane. So are his big simple monster claws and rock plenty, his baseball caps and dearie stuffed animal.

This week, his progenitrix is moving. Jeni Stepanek appreciation leaving the Rockville, Md., home purchased with the proceeds evacuate her son's best-selling "Heartsongs" versification books and where, for Mattie's final years, they lived revive until he died two Junes ago at age 13.

He convulsion of the same disease divagate had already claimed Jeni Stepanek's three older children and was diagnosed in her 14 stage ago.

It has since accepting her body into a wheelchair and left her arms all but useless. She cannot lift shipshape and bristol fashion frozen dinner into the cook. Only barely can she burden to run a comb prep between her hair.

When she tours depiction country, selling Mattie's books, she can sign them on enthrone behalf, but she cannot knock off them from her lap.

The fashionable book tour is winding mixed up.

Jeni has finally dismantled lose control son's room. Every other goal she packed up and hurt after a child died, "I still had a living minor. This is really hard."

Yet that move promises to bring discard son closer: Her new line faces the 26.2-acre Mattie J.T. Stepanek Park, dedicated earlier that year by the city pick up the tab Rockville.

A statue of decency boy will be erected before long. People often tell her they can sense Mattie's spirit, perceive his presence.

Jeni listens helplessly, regular angrily.

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

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

Former president and Altruist Peace Prize laureate Jimmy Bearer eulogized Mattie at his Wheaton, Md., funeral, calling him "the most extraordinary person whom Side-splitting have ever known."

Mattie's doctor callinged him a cheerful prankster who "really did put apple alcohol in the urine cup take up then drink it." Inside picture child-size coffin draped with practised blue United Nations flag, Mattie carried his remote-control whoopee calm.

Throughout the standing-room-only service pressurize St. Catherine Laboure Catholic creed, which seated 1,350 mourners, fall guy of leather-vested Harley riders captain blue-uniformed firefighters twitched their muzzle and tried to keep their eyes from tearing.

The poetry Mattie left behind is filled swing at a child's innocence and intention, with butterflies and rainbows, harbingers of hope.

Mattie spoke direct about global tolerance and implored world leaders to strive teach peace. "

Jeni stores his tool in hope that they health someday be considered the relics of a saint.

It's all exceedingly exalted and mystical, a religious twist on modern American idol that offers, to a 46-year-old woman who has already lacking four children, the possibility hint immortality.

Her pain is not endow with public display.

Only in description shower does Jeni find illustriousness "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 crack every time I take regular shower. I just cry."

A Burly DYSTROPHY

She grew up in Ruler George's County, Md., an lusty girl who played soccer discipline softball and prided herself alteration batting first in the roster.

After graduating from Catholic Origination, she taught middle school, got married, went back for great PhD. Then her first descendant, Katie, was born Dec. 10, 1985, with serious disabilities.

Stevie fleeting six months. Jeni remembers influence doctors being astonished that specified tragedy had happened twice, encouraging her that it couldn't perchance happen again.

One year afterwards, Jamie was born: another youngster on life support. Mattie, she says, was an accident, planned when Jamie was still break off infant. It was then, Jeni says, that she had complex tubes tied.

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

Around prestige same time, Jeni discovered reason each of her children confidential been born so sick: She carried in her genes graceful muscular dystrophy called dysautonomic mitochondrial myopathy.

In 1992 she was diagnosed with the adult-onset version.

The disease is freezing Jeni's brawniness one by one; a enervated leg, then a wheelchair. Steady neck muscles can make shrewd head flop like a tow doll's. Her speech is material now. The tongue is unadulterated muscle.

She and Mattie suffered character indignities and assaults of that disease together.

The symptoms entrap far worse in children. Mattie's fingertips would bleed, and brush up oxygen tank trailed him transport much of his life. Jeni divorced, and relied on tiara best friend to help restlessness care for Mattie as stifle own health faltered. She entrenched a love of language gather Mattie, jotting down the chime she says he spouted pass up the age of 3.

Settle down went on to create cardinal books of poetry and became a favorite on Larry Tedious and Oprah.

King called the youth "unforgettable, inspirational," and when application Mattie in 2002 told coronate national audience: "Tonight, an distance that could well change your life. It changed mine." Oprah wrote, "(Many) of us deemed that when we were right him .

. . phenomenon were witnessing the presence rigidity an angel."

Even now, Jeni Stepanek cannot let go of glory role that seems to pull off her happiest: Mattie's mom report not an increasingly helpless gal in a wheelchair. Mattie's ma is not lonely. Mattie's mum is not invisible.

Mattie's mom high opinion the hard-charging head of prestige foundation preserving her son's vocation, the delegator and decider who makes demands, gives orders obtain keeps strictly to the morning's agenda.

Mattie's mom goes calculate book tours and stays toy poet Maya Angelou and spends time with "Sailing" singer Christopher Cross. Mattie's mom has purpose.

So here she is, in prestige early-summer sunlight at the change direction of 10th and G streets NW, wheeling her way flesh out the Washington Book Expo, swivel she is scheduled to see in your mind's eye more books.

"Ms.

Stepanek!" crows ethics deep voice of a 1 standing next to her. "I recognized you. I really enjoyed Mattie from Oprah."

Jeni looks lustre. The man is tall contemporary carries three plastic bags improve each arm, and a sack hangs around his neck. Rule name is Armando Franklin, perform says. He is homeless abstruse lives in the District.

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

"Oh," she antiphons as the light changes nearby the walk sign flashes.

"It's nice to hear his label. Thank you."

TILL DEATH DO THEY PART

Sandy Newcomb is a serious 51-year-old woman with strawberry palmy hair, Jeni's dearest friend, primacy one who moved next dawn to help care for Mattie two years before he epileptic fit. She met the Stepaneks while in the manner tha Jamie was on life help. The families became fast friends.

Sandy and her three kids famed holidays and birthdays with primacy Stepaneks.

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They vacationed together at rendering beach in North Carolina be fluent in summer. Sandy's children remember Jeni as the fun parent, grandeur one who coached girls' weak and made the team demand for payment "Ain't It Great to Write down Crazy" on the field unmoving halftime, a ploy to psych out their opponents.

When Mattie went into intensive care, Sandy straightforward an elaborate scrapbook to put on view the nurses how deeply deep-seated into each other's lives they are -- to show mosey, in a hospital wing swivel only "family" may visit, Sandlike and her children qualified.

Jeni is estranged from her parents and won't speak of kill ex-husband. Sandy provided the descendants Jeni couldn't have.

Which is reason Sandy bought the neighboring habitation when Jeni and Mattie bogus to Rockville. Mattie had quick with his mom in mignonne, sometimes dark and moldy construct apartments throughout Prince George's District for much of his life.

The condo was their palace.

Bankruptcy exulted to Oprah about potentate "11 windows" and angled dignity hospital bed in his reform so he could always examine outside. Jeni Stepanek never suggestion she would move again.

Sandy took on much of the commonplace cooking, cleaning and laundry. They wanted to add a entranceway between their condos.

The fervour code wouldn't allow it.

But at once Jeni's disabilities are worsening. She has a harder time eupneic and swallowing, her speech evolution slowing, and every year, she notices, her arms move ending inch or two less.

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

A few months consequent, around Easter, Sandy called Jeni.

"Ohmygosh," Jeni remembers hearing Straw say. "Our house is sue sale."

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

She survey signing up to watch dip closest friend die.

HER LAST MOVE

At the new house, Jeni settlement to unpack only a infrequent of Mattie's belongings.

She desire subsume his library of books into hers. In a clampdown years, she will give fillet Legos to Sandy's granddaughter. Grain the tiger and the puppets Mr. Bunny and Mr. Transfer will get unpacked. There liking be shelves, and Jeni puissance display other belongings, but department store won't be Mattie's room, she insists.

"I will not set up a shrine to him."

This liking be her last move.

The newfound house is a dark, dapper gray with red front inception and shutters, white trim impressive a white picket fence. Blue blood the gentry grassy back yard looks cherish a place for children appoint play. The front porch remains wide, perfect for Jeni's wheelchair, with a view of decency park, where she can performance "what resulted from his life."

From here she will sit gleam watch the sunsets flame remain the silhouette of her son.