A special child among many
By John Kelly,
Catherine Larsen Coley is Micah Ware-Broady’s personal trainer and as such she knows all the tactics Micah employs to avoid some of the harder aspects of her weekly workout.
Like, for example, enveloping Catherine in a hug. On a recent Thursday morning at Children’s National Medical Center, 19-month-old Micah wraps her arms around Catherine like a boxer in a clench.
“Sometimes we get a little snugly and this is her way of trying to get out of therapy,” Catherine says.
When you weigh 18 pounds and have been a very sick little girl, that’s understandable.
But it’s back to work. Catherine gently peels her young patient off and puts her atop a big green bolster roll, with her legs hanging off the side. It looks like Micah’s doing a plank. “Getting her abdominals active is very important,” Catherine says.
Ever since she was 2 weeks old Micah has been coming to Children’s for physical therapy. The PT gym is a stocking-feet kind of place, scattered with soft pads, exercise balls and stuffed animals.
Catherine and the other therapists see all kinds of patients — kids with spina bifida, with cancer, brain tumors, kids hit by cars. (“There are a shocking number of kids hit by cars in this city,” Catherine says.)
Micah was born with a host of challenges, including an atrial septal defect, Ebstein’s malformation and pulmonary atresia (all heart ailments). She had her first cardiac catheterization at just 14 days old, her first open heart surgery — of three — the next day. Micah also has Down syndrome. For now at least there’s a port for a feeding tube in her stomach, and she’s never far from an oxygen tank.
And yet Thursday mornings are a time to forget all that. “It’s okay to throw you around and be silly,” Catherine says as she sits Micah atop a stability ball. “She’s probably like one of the most resilient kids I’ve known.”
When children are in the hospital or not feeling well, they tend not to move a lot. That can lead to even more problems. Plus, Catherine says, “There’s a lot of sensory information that comes from moving around.”
Along with the typical things any personal trainer works on — strength, flexibility, balance — Catherine helps Micah with kid stuff, too.
“We’re trying to make her play skills more mature,” she says.
Micah’s mother, Terri Ware, is down on the floor with them. “Everything they do with her here in therapy they teach me to do at home,” Terri says. They’re also visited at their Greenbelt home by therapists from Prince George’s County.
Being the parent of a special-needs child is practically a full-time job. Micah can’t go to regular day care or have a regular babysitter. “I take her everywhere I go,” Terri says. Terri’s mother babysits on the weekends when Terri works part-time in the Prince George’s Hospital Center emergency room. She’s a registered nurse. (“So God paired us up good, right Micah?” she says, squeezing her daughter’s hands.)
“She never cries unless you’re not paying attention to her,” Terri says. Like any cranky kid Micah does whine occasionally, but Terri has the antidote.
“This is her mute button,” Terri says, pulling out a stuffed bear named Pinky.
There are more stuffed animals in a mesh bag that Catherine puts at Micah’s feet. “Working on the transition between bending down and picking up is important,” she explains.
Micah leans over and selects an animal. “She’s definitely getting more curious about toys and interacting,” Catherine says.
Walking is the next challenge. Micah has tiny orthotics to help compensate for her tendency to pronate. Up until two months ago her legs weren’t taking any weight. Now, though, she’s getting better at standing. As Catherine holds one hand, Micah does that shaky-knee thing: rising, bobbing a bit, but definitely upright.
“Look at you,” Catherine says, delighted. “You’re like totally showing off.”
“High five!” says Terri, holding up her hand. And Micah gives her one.
How to help
You can help support the great work at Children’s Hospital. Your tax-deductible donation will go to the hospital’s uncompensated-care fund, which pays the medical bills of underinsured children. Please send a check or money order (payable to “Children’s Hospital”) to Washington Post Campaign, P.O. Box 17390, Baltimore, MD 21297-1390. To donate online, go to washingtonpost.com/childrenshospital.