To his mother, Trisomy 18 child in St. Petersburg is forever her perfect boy

ST. PETERSBURG

Every afternoon about 4 p.m., Karen Heaton walks through her house, out the back door, and stands at the top of the wheelchair ramp.

Waiting for Donnie.

By then Heaton, 63, has bagged all the dirty diapers, spread new changing pads across the sheets and smoothed the blankets on the king bed she shares with her son. She has cleaned his back-up feeding tube, sterilized the syringes, charted a cabinet full of medications. She has washed the clothes, vacuumed and propped body pillows around the gym mat that fills her living room floor.

Donnie's school bus isn't due until 4:30. But his mom is always early.

When the bus rumbles down the alley, Heaton hurries to greet it. As soon as an aide lowers her son's wheelchair to the ground, she starts singing, "I love you, you love me …" He lifts his head and grins. Heaton keeps singing, "We're a happy family."

Donnie is 20. He can't walk or talk, eat or drink, sit up or even turn over. She calls him her perfect boy.

• • •

Heaton is a short, thick woman with a square face and graying hair. Her shoulders are slumped; her smile seems sad. She is always exhausted. Except when she's talking about Donnie.

She didn't think she was meant to be a mom. She didn't particularly like kids. She dropped out of St. Petersburg High at 16 and moved into the Masonic Home of Florida, where she helped care for elderly residents. She thought she would be a nurse.

She turned 24 without ever having a boyfriend. Finally, a friend set her up with a Christian dating service. Don Heaton, a decade older, took her to Morrison's Cafeteria. Two months later, they married and she moved into his two-bedroom house.

He worked at the Times' printing plant. She took a job cleaning motels. On weekends, they made dinner together, went camping, joined a Christian couples' group. When their friends needed time away, the Heatons kept their kids. "We never really talked about having children of our own," Heaton said. "We always figured, God's will be done."

They had been married 18 years when, one night, Heaton picked up her husband from the bowling alley and told him she was going to have a baby.

Suddenly, at 42, she couldn't wait to be a mom.

Doctors showed Heaton an ultrasound of her son sucking his tiny fist and she got scared: "I didn't even know how to change a diaper."

While she and her husband hung Noah's Ark curtains, they talked about their son's Little League games and bike rides, first dates, cars and college.

But when Donnie came, 5 pounds of pale wrinkles, tiny ears and curled toes, doctors wouldn't even let her hold him. Something was wrong. Trisomy 18, they told her. The extra chromosome brought complications that meant he probably wouldn't live to his first birthday. He also had cerebral palsy, gastric complications, a leaky heart valve.

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All Heaton heard was: Your baby is going to die.

• • •

"Here we go, Honey. I got everything all set up. How was your day at school? I missed you," Heaton says on this bright May afternoon. For 15 years, ever since he was 5, Donnie has been attending Nina Harris School for special needs kids in Pinellas Park. There, he goes to art and music and physical therapy. Heaton brags, "He's the most popular boy in school."

She rolls her son into the living room, parks him beside the gym mat. Bins filled with cloth books and plastic balls line the wall.

For years, Heaton couldn't go into a toy store without crying. Donnie couldn't play with the toys, would probably never even advance to the toddler aisle. Now, she heads straight for the infant section and picks out things that crinkle.

"You want to get out of your chair?" she asks, turning on the big TV.

"Uhhhhh," Donnie says.

"Okay, give me a second," says Heaton, untwisting the clear tube that snakes from his belly button. "Be patient."

Donnie is about 4 feet tall and wears size 8 boys' clothes. In the last year, since doctors changed his feeding ports, he has put on 13 pounds. He is still spindly, even at 55 pounds. But the extra weight has made it harder for Heaton to lift him. Her back and shoulders ache. What 63-year-old mother still lifts her son and carries him? He's forever the size of a third-grader but she is not forever a young woman.

She hoists him into her arms, stumbles backward, then steadies herself. "Here we are, Honey," she coos, bending to slide him onto the mat. "It's okay."

She props him up with pillows. "So what do you want to do?"

• • •

Hospice workers tried to prepare her. Doctors warned her that if her baby survived, he would likely be deaf and blind and unresponsive.

She fixated on the prognosis: "Vegetable."

But Donnie hung on. After a week, with her baby still in the hospital, doctors sent Heaton home and urged her to plan his funeral. As she left, a nurse gave Heaton a brown teddy bear. Its fur grew soggy with her tears.

"She really didn't want to let herself hope," said Heaton's best friend, Lorna Hawley.

Then, one day, Heaton was watching Donnie through the window of the intensive care unit as a nurse knocked a metal instrument off a tray. When it clattered to the floor, Donnie startled. A week later, a doctor was shining a scope in his eyes and he winced.

Heaton was overjoyed. Any sign of surprise or irritation meant he was conscious, alive.

• • •

Every evening about 7 p.m., Karen Heaton pours thick, milky liquid into the bag that hangs from Donnie's wheelchair.

She clears both tubes attached to his belly, turns on the pump, and listens for the beep.

She hates eating alone. So unless her pastor asks her over, or she meets a friend at Po' Folks, or loads Donnie into the van and drives through at McDonald's, she seldom has dinner.

Sometimes, Donnie yanks out a tube and she has to get a clean one. That's as long as she will leave him alone: the time it takes to walk to the kitchen and back. While she is away, he might choke or stop breathing.

In two decades, Heaton has been away from her son overnight only twice. Both times, she left Donnie with her best friend, went on a church retreat — and cried all night.

So while other moms are doing dishes or helping their kids with homework or having a glass of wine, Heaton eases herself back onto the floor beside her son and turns the TV to Wheel of Fortune.

She kicks off her sandals and fluffs the pillows and sets a ball in Donnie's lap. He stares at the ceiling, not moving. But as soon as she settles beside him he turns to smile at her, and reaches out his thin right hand to touch her cheek.

"Mmmmm," he murmurs. She knows he means Mommy.

• • •

Donnie was a month old when Heaton finally got to bring him home.

For her, becoming a mother meant letting go of the things other moms take for granted: seeing her son crawl, run and jump, hit home runs, go swimming in the gulf.

"I had to let that boy die," she says, "so Donnie could live."

He grew out of his stroller, into a wheelchair. He grew dark hair and fragile limbs. He learned to laugh.

He spent long weeks at All Children's Hospital, had five surgeries, countless scares. But he always seemed happy. "Even when he was in a lot of pain," his mom says, "he'd flirt with the nurses, especially the young blonds.

"We knew, from early on, that he was in there. Donnie was never a vegetable. He's got a great personality."

For the first 10 years, Don Heaton did most of the heavy lifting, hoisting Donnie into his chair, the tub, his own railed bed. They took Donnie to Disney World, to Sea World, to a timeshare where he got to float in a pool.

Don died when Donnie was 11. For the last decade, Heaton and her son have been mostly on their own. She misses her husband's help — but more than that, she misses him holding her, telling her everything will be okay.

"People think I don't have a life," she says. "But I do. I have Donnie."

He looks like a cross between a wise old man and an infant. He has soft, cropped hair and big eyes, a forehead that creases into deep furrows when he is angry. When he's happy, a crooked smile consumes his small face and he sucks his fists.

"He functions sort of like a 6-month-old," Heaton says. "Except he almost never cries."

She talks to him constantly about what's on TV, how he's feeling, what a good boy he is. Sometimes he seems to understand. Her home is decorated with framed photos of her son and the paper flowers aides helped him make at school. She answers her phone, "Hello, this is Karen and Donnie."

They live on her husband's retirement and Donnie's Social Security. Medicaid helps pay for an aide most mornings and for a few hours over the weekend.

But Heaton seldom asks for time away from him. On Saturdays, she drives him to the Wagon Wheel Flea Market, to Gulfport Beach, to window shop at the mall. Sundays find them at Journey Christian Center, where Donnie sits in the aisle, swaying to the piped-in praise music. "He is the happiest kid, just singing his own song," says the Rev. Craig Brown. "I can't imagine having to do what she has done for her child. God must have known she needed something to carry her through."

Donnie is now one of the oldest male survivors of Trisomy 18. Heaton worries what will happen in September, when he turns 21. She frets about school options and whether he will still be able to see his pediatrician. What if her back gives out and she can't lift him?

"I used to pray that he would live, for God to let me hold onto him a little longer," she says. "Now, I don't know. I worry he might outlive me. Then what?"

• • •

Every night about 9 p.m., Karen Heaton heaves her son back into his chair, rolls him to the bathroom, brushes his teeth. She peels off his clothes and wedges him into pajamas, slides him onto her bed, against the wall.

"Sweet dreams, Sweetheart," she says, kissing his forehead. Then she crawls in beside him, positioning herself on the outside like a railing. "Mommy's right here."

If something happens overnight, she'll already be there. She wants to feel when he starts sweating, hear if he stops breathing. Most nights, she changes five diapers.

People ask her if she has considered a nursing home for Donnie. She can't imagine it.

"I'm his mom," she says. "Without him, I'm not me."

• • •

Sometimes, in the dark, Heaton thinks of other moms. How do they do it?

They have it so hard.

Many moms wish, from the time their children take their first steps, that they could keep them small. Then they watch their toddlers pedal away on trikes, their kindergarteners walk off to school, their teenagers drive away.

"Sure, Donnie will never talk — but he won't ever talk back," Heaton says.

He will never walk, so he won't ever run away.

He can't ask for money, roll his eyes at you, date a girl you don't like, or fall in with the wrong crowd.

He will never grow up and move away.

He will always need her and love her and coo when she cuddles him. For as long as he lives he will be her baby.

• • •

In more than 25 years working for newspapers, I have written dozens of stories about mothers:

A selfless mom who took in a pregnant girl. A selfish mom who almost neglected her daughter to death. A drug-addicted mom who lost her kids — then fought to get them back.

I have written about a fraternity house mom, a mourning mom, a mom who wanted a boob job, a mom who died and left a hole in her family. About my own mother, my grandmother and my attempts at mothering my two boys, teenagers driving away from me.

On the way home from Heaton's house one night, musing about her eternity of motherhood — and how she embraced it — I thought about all the other moms I have known. And I realized that most of us want the same thing, and it's not cards or flowers or brunch.

We want what Karen Heaton wants. One more day.

Lane DeGregory can be reached at (727) 893-8825 and at ldegregory@tampabay.com.