Don't sit this one out
WEST NEWTON - It is one of the most memorable images ever to have graced our pages.
A little girl stands in a drab hallway, feet in a ballet pose, arms outstretched, face turned up. Long plastic tubes run from a ventilator to a trach in her neck, but she doesn’t see them. Her eyes are closed with joy. Jessica Leahy is dancing.
The award-winning photograph was part of a Globe story on children living with ventilators, and Jessica, born with a rare nerve disorder, was really living: When her picture appeared on our front page about a year ago, she had just finished a semester’s ballet classes at a Newton dance school. She was in heaven at the Joanne Langione Dance Center, disconnected from the tubes, twirling with the other kids. The 6-year-old announced she would be a ballerina when she grew up.
When Jessica was born, doctors told her mother, Julie, she may never walk or communicate or eat normally. But for seven years, miracles have piled up, and Jessica does all of those things. With a nurse’s help, she attends an ordinary elementary school. At ballet, her mother sat outside the classroom in case her tube needed suctioning, and paid for private lessons to help her keep up with the other children. Jessica was thriving.
“I always tell her she can do anything,’’ Julie said, sitting in her kitchen earlier this week.
But it turns out Julie Leahy can’t always make good on her word. When she tried to sign Jessica up for ballet classes again this year, the school told her she couldn’t come back. After six months teaching Jessica, instructors said they weren’t trained to deal with her challenges, that they were worried she would injure herself. Julie assured them Jessica’s trach wouldn’t come out, even if she fell. She offered to sit inside the classroom to make sure her daughter was safe. The school said none of that would work.
“We don’t want to put Jessica at risk,’’ Joanne Langione told me this week. “I wish I could accommodate Jessica and little children like her, but the program we offer is very demanding. We’re heartbroken over it.’’
So Langione knows better than Jessica’s own mother? Julie wonders if other parents complained about Jessica slowing their children down. Or maybe the school was afraid of being sued, even though she would gladly sign an agreement freeing them of responsibility. But then she realized: “If they don’t want her, why would we ever go back?’’
Instead, she tried a different school. But Jessica couldn’t handle the fast-paced hip-hop and jazz that came with the ballet. So her mother tried the Boston Ballet school. They couldn’t take Jessica, though they told Julie they’d like to start a program for kids like hers.
The problem is, there aren’t a lot of kids like Jessica. She has Moebius syndrome, a rare combination of challenges.
“Where do we fit in?’’ her mother asked. “Do we always have to find a special needs program every time she wants to do something?’’
Jessica should fit in everywhere. We talk a good game about embracing people with disabilities. Doing it is clearly much too hard for many of us, especially when someone’s challenges are unfamiliar. Julie Leahy keeps pushing.
On Monday afternoon, Jessica was in her living room, dancing again, her hands fluttering. Her mother had called another ballet school, and they said they’d take Jessica. Julie wasn’t sure if she should mention this new possibility. She didn’t want Jessica to be disappointed if they changed their minds. But the first class was coming up.
“We’re going to that new school tomorrow,’’ Julie told her. Jessica clasped her hands above her head and yelled “Yaaaaay!’’ Watching her - twirling, jumping, utterly unselfconscious - you’re filled with joy and trepidation, and an overwhelming desire to put the Dance Center of Waltham on notice: This kid is special in ways you cannot see. Don’t let her down.
Julie Leahy co-founded a support group for parents of children on ventilators called TrachCare in 2004. Contact them at www.trachcare.org or (617) 527 1990.
Yvonne Abraham is a Globe columnist. She can be reached at abraham@globe.com 