To read ont the Tampa Bay Times website:
To his mother, Trisomy 18 child in St. Petersburg is forever her perfect boy
By Lane DeGregory
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. Pete 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, five 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.
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. Continue reading.