When her daughter’s rare condition attracts attention from strangers, Lauren Beauregard worries about the impact it has on her.
Story Transcript
So, family and I are waiting in line for what is collectively our favorite ride in all of Disney World, Astro Blasters. So if you've not been on this ride, you are in a little spaceship and you go through a series of scenes where you shoot laser guns at moving targets, all to aid Buzz Lightyear as he defends the evil Emperor Zurg.
My son likes spinning the car. My husband likes the competition where we get to compare scores at the end of the ride. Spoiler alert, he always wins. And my daughter just likes the part where we shoot things.
I love that everyone loves it. It's bright, it's loud, and that starts in line. There's neon aliens on the wall and everything is oversized. Up ahead, there's Buzz Lightyear himself, directing us through a door that you think is the end of the line. It is not. But the line snakes back and forth, so there's always something new and someone new to see.
So there we are. The kids are playing and talking. My husband and I are chatting. We're exhausted in that way that only Disney makes us, and we're so happy and it's all smiles. And then his face changes. It hardens.
This isn't my first rodeo or space exploration, as it were, so I know exactly what's happening. And without a word, we move into formation. All I have to do is follow his line of sight and I see just what I knew I would. There's a family staring, pointing, snickering, calling others in their party over to look at my daughter's feet. “I hope her feet aren't actually that big. She looks like Goofy.”
My favorite time like this was in an Olive Garden bathroom when a desperate grandma pointed out my daughter's feet to make her tantrum‑throwing grandson laugh. “Look at her shoes, honey. Aren't those funny?”
Kiki wilts. Right there in the Astro Blasters line, she sinks into her wheelchair seat. Her shoulders hunch. Her gaze drops. She pretends not to notice because she doesn't want anyone to know that she's hurt, but she is.
So I step into their line of sight and I don't turn away. I put on my ice queen face. We're in Disney, so I'll call it my resting Elsa face. It's honed over years of riding public transit and walking city streets in Seattle winters. They see it. They back off, embarrassed.
Here's the thing. My default is that I like to leave everyone I interact with better than when I met them. But not here and not now when your enjoyment is at the expense of my daughter's comfort and safety.
That trip lasted six days, and that scenario happened more than 10 times. It's exhausting for us as parents. And it's exhausting for her brother who sees what's happening, who worries about his sister. And it's exhausting, most of all, for Kiki. Because, yeah, she notices even if she doesn't look like she does.
She knows she looks a little different. Her cognitive development is on track. She knows she shouldn't be your entertainment. But she doesn't have the power to say that to the kid who's making mean remarks or the middle‑aged men whose behavior is even worse somehow than those kids.
And it's all the time, even in the happiest place on earth. No, she's not dressed up as Minnie Mouse. Yes, her feet really are that big. No, those aren't her dad's shoes. In fact, a pair of shoes for Kiki costs more than $2,000, and insurance does not usually cover them.
Kiki has a condition called CLOVES syndrome. She's one of about 3,000 people in the world with it, but I'll get back to that in a second.
So, fast forward a year and we're getting ready for another trip to Disney because, exhausting or not, it's still our happiest place on earth. Kiki gets comments at the grocery store every day, out and about. So at least in Disney World, she can eat a 16‑inch long churro while you stare.
My husband and I are in bed, going over the packing list, the timelines, the dinner reservations, dog sitters, and how much the kids can spend on souvenirs, and we both fall quiet. The kids are downstairs playing video games. The dog is sleeping. It's gray outside because it's April in Seattle and we cannot wait to see some sunshine.
“I'm anxious about dealing with people staring at Kiki,” my husband says.
“Yeah, I am too.”
We sit in quiet. Downstairs, our 12‑year‑old exclaims in a way that might be anger or might be glee, but nobody starts arguing or crying so we're pretty sure it's fine.
“I wish we could have cards,” my husband says then. “I wish I could just hand somebody a card when I watch them staring. It could just say, “Caught you looking,” and maybe have a QR code or something so they could donate.”
Sometimes he has really good ideas. I can make that.
So 15 minutes later, we're looking at the first draft. “Make the font pointier. Add a clover.” We add a description on the back. “CLOVES Syndrome is an ultra‑rare genetic overgrowth condition caused by a random change in a gene that is also associated with some forms of cancer.”
“Add a QR code,” he says. “If somebody's going to laugh at our daughter, the least they can do is donate $5 toward research.”
A few days later, the cards arrive. And a few days after that, we head to Disney World, cards in tow. We took them with us everywhere, out to dinner, on rides, in lines, to shows, on buses. They lived on us, and we handed them out whenever someone stared or laughed or asked questions.
Because of those cards, their laughter became an opportunity. What used to feel like having our power stripped away, like being the butt of a joke, watching our daughter be the butt of a joke, turned a 180. Now we had the power.
It's so simple. Card in hand, a cool smile. “Hey, she has a rare medical condition. You can learn more about it here.”
Sometimes people freeze. Sometimes they apologize. Sometimes they grumble and look away. Other times they engage and they want to learn more, and they always take a card.
So it's the last day of our trip. Kiki and Maddox, my son, are playing in the misters outside Test Track. That's another one of our faves.
Kiki comes over. She taps me, motions for me to lean down a little. Then she says, as quietly as someone can say and expect to be heard while you're in Disney, “Can I give a card to that girl over there? She was asking about my shoes.”
“Yeah, of course you can.” So I fish one out and I give it to her, but I have no idea what to expect.
When she walked up to that girl around the same age as her, she stood a little taller. Her shoulders were back and there was a real smile on her face. “I have a rare condition. You can learn about it here.”
The girl took the card, said thank you, and Kiki beamed as she walked back to me.
That's the end.