Wednesday, June 17, 2009

Wednesday, June 17th, 2009

A note from Mommy:

At this stage in her life, Peyton is blissfully unaware of her differences as compared to other children. But there will soon come a time that either she realizes it on her own or someone points it out to her. Lots of people in the medical community have given us the advice to take her home and treat her like any other kid but the reality is that even if we may treat her that way the rest of society may not. When I read the original article in the Boston Globe last year about how this little girl was getting to dance I was so thrilled to think that a child with her medical complexities was allowed to be just that - a little girl. But reading the follow up article I can't help but feel disheartened that she hasn't quite found her happily ever after. I have no doubt we will experience similar situations with Peyton as she gets older and wants to participate in all that life has to offer - I only hope that Peyton finds a community of people who are willing to overlook all that makes her "special" and see instead a little girl who will just want to be like everyone else.

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.


  1. Dear Tracy,
    I don't know quite how to respond
    to what you wrote on your blog today,but I feel a response is definately in order.I believe our
    precious grandaughter is 'special'
    because of the rare medical conditions she is challenged with,however I firmly believe she is 'special' in all the ways we have talked about since she was born that are above and beyound
    anything of a medical nature.
    Peyton will and would have touched
    the hearts of many people irregardless of any of her present health issues.I believe she will
    in part be shaped by the experiences she has had to,and will have to go thru in her future.
    But I believe she will come thru all of these challenges with added
    insights to help her and people she will encounter along the way.
    I believe Peyton will be a force to be reckoned with honey.Strong
    when she needs to be,and sensitive
    to others fellings as well as to her own needs.
    In the final anaylsis, Peyton will be shaped by the many family
    and friends who love her,and her
    wonderful mommy and daddy top that list.Your precious little girl will figure it all out Tracy,and you and Travis will be their every step of the way to guide her and encourage her.
    I couldn't love her or her parents

  2. Peyton was special from the moment she was conceived, and even if "Nager" is a word we had never heard or become familiar with, Peyton would always have the special place in our hearts she has now.

    The fact that she has a condition to define all her little unique traits does nothing but help define her course of medical treatment. Peyton is not a child with Nager, or even a "special needs" child, Peyton is a child, and an AMAZING little girl with a personality and independence all her own! She is bright in ways that we can't even define yet, and with the help of EVERYONE who loves her, we will see her through any rough patches up ahead!

    And if all else fails, you need to move your butt's back to Salt Lake so Jackson can stand up for his little P if push comes to shove! "Nobody puts Peyton in a corner!"