The pictures are ordinary. There’s Lucy in front of Cinderella’s castle. There’s Lucy on the Dumbo ride. There’s Lucy standing next to Prince Charming.
These are shots that everyone takes. “Stop. Look at me. Say ‘cheese!’ ”
Even the best of the photos, the candids, the ones where she isn’t posing, where she is laughing, clapping, gazing up in wonder, where she is dancing, swimming, running, eating a chocolate doughnut, don’t begin to capture all that was.
Lucy is my granddaughter and she is 9 and has Down syndrome. Last week a friend and I took her to Orlando and to Disney’s Magic Kingdom. And it was magic, every minute of it. We took hundreds of pictures that should show this.
But none does. Just like the fairy dust that a cast member sprinkled on us the first day, the magic was temporary. Walk away, leave the park, get on a plane, go home. And it’s gone.
Lucy is who she is because she has Down syndrome. Taking it away would change her.
Illusion. Sleight of hand. Was that all it was? If what we saw is not in the pictures, does it not exist?
Back here in the world far away from the Magic Kingdom, Lucy’s days consist of school and little children talking to each other and playing games, third-grade games, that are challenges for Lucy. Every day in the world far away from the Magic Kingdom, there are constant reminders of all that Lucy cannot do.
Walt Disney World was the other side of the coin.
Lucy was the model child there, the one all parents would beg for. The child bedazzled by everything. The child who loved every ride, every character, every parade, every hamburger and chicken finger and ice cream, never mind whether it was vanilla or chocolate or in a cone or in a cup.
Lucy never went into a store and pouted because she couldn’t have something. She looked at all princess dresses and shoes and crowns and gloves and magic wands and princess dolls and gasped and said they were beautiful. But she left them there and went on to the next store and the next and the next, eventually choosing just a necklace.
Lucy didn’t want to get her hair done at the Bibbidi Bobbidi Boutique. “No thank you,” she said. But she walked around and told all the little girls who were getting their hair styled how pretty they looked.
She wanted to do the hula hoop like everyone else, but didn’t have a meltdown when she couldn’t figure out how. She tried for a while, then handed the hoop to another girl. She didn’t throw a fit when we told her the line was too long at “Enchanted Tales with Belle” and that we would go on “Ariel’s Undersea Adventure” instead. She said, “OK,” and away we went. And she didn’t complain, not even once, when we told her at the end of each day that it was time to go.
Most kids say, “But I want to sit here!” or “I want to go first” or “I want to sit on this horse, not that one.”
To an elderly woman in a wheelchair, she asked, “What happened, Grandma? Are you all right?’ To a boy who was crying, she said, “It’s OK.” And to me as I screamed on the “Tower of Terror,” she took my hand and said, “Don’t be scared, Mimi.”
“I wouldn’t change a hair on her head,” I heard a mother of a child with Down syndrome say when Lucy was 4 or 5. And I thought, back then, I would. I would take away her Down syndrome in an instant because it would make Lucy’s life easier.
But what I’ve learned is this isn’t true. It would make our lives easier — her parents’ and family’s and teachers’. But Lucy is fine with her life.It’s not without problems, but whose life is?
Lucy is who she is because she has Down syndrome. Taking it away would change her. Her spirit, her love of people, her innate, unselfish goodness. They’re on that extra chromosome. Not illusion, not sleight of hand, not things a camera can capture, but real.