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These mothers face challenges most of us can't begin to imagine, but they can't imagine their lives any other way, nor do they want to.

Love is a Gift

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Graham's World
by Brandon Walters

Graham Ellis has a kissable face. Just ask anyone who knows him — especially his mother, Karen. And unlike other teen-aged faces, taut in sullen obstinacy, Graham's indiscriminate smile and unblemished complexion make him seem far younger than his 13« years. Dark eyes squint with the sparkle of a happy child gripping a Popsicle. Touch his shoulder or shake his hand. The first thing you'll notice is his gentleness. As if thinking this very thing, his mother adds "Sometimes I wish I could live in his world."

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Here, at his home in Brandermill, the afternoon spring sun pours like a watering can over geraniums. The airy first-floor rooms bask in brightness, and Graham sits smiling in his wheelchair, welcoming the attention. His mink-colored hair is cropped neatly, having finally outgrown his mother's last attempt at a George Clooney buzz cut. He wears black Chuck Taylors.

More than his disability, Graham's look and state of innocence at once set him apart from other teen-agers. Graham will never be swayed by peer pressure. He'll never tempt death with drugs or violence. He'll never be alone. And although he may not express it verbally, Graham will never live in a world he fears — a world without hope.

Today, when teen-agers' loss of innocence comes too soon, this innocence in a 13-year-old is more than refreshing: It's enduring. But the trade off for this kind of insular safety is one no mother would choose.

When Ellis, director of media planning for the Martin Agency, gave birth to Graham on July 13, 1985 she was like any other first-time mom. She spent those first few months envisioning all sorts of possibilities for her son. Each rite of passage to come — his first word, step, day of school, date, car, girlfriend, job — forged an imaginative trail through her new-mom tomorrows.

Today, Ellis' role as mother is far different from what she envisioned. She didn't know she would be raising a handicapped child. She didn't know she'd be doing it alone as a single mom. But after more than 13 years of loving and learning, Ellis wouldn't have it any other way. "We're very independent," she asserts.

At Swift Creek Middle School in Chesterfield County, Graham is classified as "severely and profoundly disabled." He was born with a birth defect which at 6 months old, doctors diagnosed as a combination of cerebral palsy and epilepsy.

"Prior to this I thought doctors were gods and could cure anything," Ellis says. "Now I know they're just human."

At school and at home, Graham spends most of his time in his wheelchair. He doesn't read or write or speak discernibly. But those close to Graham have no trouble understanding him. He often listens to Metallica. "He responds well to stuff on XL-102," says Megan Fenwick, a family friend who meets Graham every day at the bus stop, feeds him and keeps him company until his mom gets home from work. His mom, on the other hand, is partial to Creed. While not a huge sports fan, weekends are spent watching football on TV with his grandfather — especially Syracuse. He's never played with any toys.

"What amuses him are people," Ellis says. "His favorite play thing is my mother." An obvious people person, when it's time for Graham to find a job — a requirement for Manchester High School's program for disabled students — his mom says he would be a perfect greeter somewhere like Wal-Mart.

Until then, Ellis revels in her son's hard-earned day-to-day achievements.

She came home from work one day to find a video that had been sent home with Graham. Stuck to the box was a Post-it note from his teacher which read: "These sneakers were made for walking!" Excited, Karen played the tape. There was Graham using his walker, putting one foot in front of the other, following girls down the school's hallway — like any other teen-aged boy. At that moment, Ellis felt the flush of joy and pride that comes with watching a child take his first steps, a feeling most moms would have experienced 12 years earlier. "I honestly thought I was going to have to wait to go to heaven to see him walk, " she says, beaming.

As a mother of a handicapped child, Ellis quickly learned that with progress there are challenges and accommodations that must be made. Graham hasn't been able to eat through his mouth for the past four years. Instead, he is fed through a tube in his stomach. His diet: 1 cup of milk, « cup of baby oatmeal and Carnation instant breakfast puréed together and taken four times a day. "That's my cooking," laughs Ellis. But with the daily help of Megan, there is a chance Graham could eat again. "Maybe we can train him to swallow, train his muscles to work again," says Ellis.

"I've always been such a believer that he should experience what other kids do," says Ellis. Three years ago when no middle school program for kids like Graham existed in her school district, she helped create one. Now Swift Creek Middle School has an intermediary program for profoundly disabled kids before they graduate to Manchester High School.

And there still are obstacles she and Graham face together. "There are a lot of places we still can't go because of wheelchair access." And perhaps more frustrating than physical limitations are mental limitations like fear or doubt that occasionally spring to mind like flashing, yellow caution lights, when Ellis plans a trip or outing. In spite of wanting Graham to experience what other kids do, Ellis knows he is not like other kids.

She is eager for Graham to tackle new things, but reluctant to go too far beyond their scope of daily practice. "I'd like more than anything to take him to Disney World, but I'm afraid there might be obstacles," she says, trailing off quietly.

But in her approach, Ellis offers no apologies or regret. "Right or wrong, I take every day as it comes. There's no book written about this kid."

After waking at 5 a.m. each morning, Ellis gets Graham dressed for school, then readies herself for work. She confesses that this has become more difficult now that Graham has grown to nearly her own size. "We're still in denial that he's getting so big," she says referring to the Hoyalift harness that rests, rarely used, in the corner of Graham's room.

Ellis smiles when describing the nearly two-hour morning routine, as if it's effortless: "When I walk in he gives you the biggest smile and is so happy to see you. It's the best part of the day."

After the 7 a.m. bus stop pick up, Ellis heads to her job at the Martin Agency in Shockoe Slip. After her regular morning coffee with a friend, Karen begins her "official" work day. What would be grueling to most is an outlet for Ellis. And as far as support is concerned, she found that for her, traditional support groups only seemed to offer "all these horror stories" and made her dubious. "I find my encouragement and peace at work."

She's usually back home by 6 p.m. and after two hours of unwinding and preparing for the next day, Graham goes to bed. Bedtime for Ellis is 9 p.m. "It's really pretty boring," laughs Karen.

Boring or not, it is a life many of her friends marvel at. "They always say: 'I don't know how you do it.'" she laughs. "But I just deal with it, it's life." Although single, and very attractive, she doesn't date, but only because she says it's not a priority. And as Graham's companion, Megan, is quick to point out about Ellis, "She's got very discriminating taste." The two laugh at this, realizing its truth. Still laughing, Ellis admits "I'm the luckiest mom in the world because I can still kiss him." How many other 13-year-old boys would allow that?

Seated between his mom and Megan, Graham, who has been unusually quiet today, smiles from ear to ear. Chances are it's because he knows he's the main man in his mom's life.

Click here to e-mail Brandon Walters

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