The Princess on the Carousel

Now that I’ve processed and decided to leave my Make-a-Wish guilt behind, I’m getting really excited for our trip to Disney and Universal Studios.

Alastair has been hitting the guidebooks, and a friend of a friend who helps people plan Disney vacations, via her company Kingdom Planners, has provided some great tips and sample itineraries (thank you!). Reading about the specifics is helping to dissolve our misanthropic distaste for theme parks, and anti-establishment suspicion of the corporate juggernaut that is the Disney company.

It’s also reviving fond memories of the two trips my family took to Disney World when I was a young kid, times when we went to visit my grandparents, who had a condo in St. Petersburg.

One of my most vivid memories — one I’ve never really forgotten — is from the first time we went, when I was in kindergarten. It was an evening visit, and I donned my most beautiful dress to ride Prince Charming’s Carousel. I chose the horse with all the flowers on it (which I assumed was supposed to be Cinderella’s) and rode side saddle, for the most princess-y possible effect.

But then I felt like people, including my parents, were watching and smiling at me in a fond, isn’t-she-cute sort of way, for attempting to be so damned princess-y, and I got embarrassed. I wished that, at the very least, I hadn’t done the stupid side saddle thing.

I know. Was I the world’s most self-conscious five-year-old or WHAT?

I’ve come a long way since then. And yet, like that overly self-aware, five-year-old half-hearted princess of yore, I’m feeling a little self-conscious about one aspect of our upcoming Disney trip: The notion of being there as one of those families, with our big, blue blue Make-a-Wish buttons crying out WE HAVE CANCER! Or even without the buttons: while Clio has a nice little head of hair on her now, it’s still very short, and she still chooses to wear a hat, so I think most people probably guess what’s going on.

It can be draining to have people looking at you all the time with those fond or pitying looks — even when you know that it’s coming from the kindest and most generous and empathetic place in their hearts. It’s hard to feel like their ears are perked to your conversations (yes, parents have to parent their child with cancer sometimes, dammit!), and their eyes are perked (?!) to what you’re doing.

It’s hard have that constant, external reminder of the situation you’re in — a situation I honestly still can’t believe we’re in sometimes. We’re going to Disney World with the Make-a-Wish Foundation? Us?? WTF?! (You may tell yourself: This is not my beautiful house! This is not my beautiful wife!)

And, hell, I don’t want to remind other people of the situation we and others like us are in. I suspect there are folks out there who, like I used to, have the misconception that Make-a-Wish is only for children who are terminally ill. I mean, jeez, I don’t want to make anybody cry at the happiest place on earth!! There’s no crying in Disney!

On the upside, I suppose, we might have the effect of making people who see us thank the Lord for their blessings and hug their children and stop getting quite as exasperated with them for a few hours (aw, what the heck, sweetheart, sure you can get ice cream right before dinner.). Which is a nice effect to have.

And maybe some of them donate to childhood cancer research or wish granting organizations and they’ll think: Yes. This is what it’s all about. Or maybe some of them will be inspired to donate in the future, which is also excellent.

On the other hand, maybe we’ll just piss everyone off because we get to go ahead of them in line. Heh.

On a related note, moving away from me as self-conscious thirty-nine-going-on-five-year-old, there is another kind of attention that I’m actually more apprehensive about: The attention that I suspect (from experience) many people — from ride operators to freakin’ Ariel and Goofy — may heap on Clio but not on Elsa.

It’s already beginning: Even the confirmation letters we’ve gotten for our trip say CLIO’S WISH TRIP! in big bold letters. Which, of course, makes perfect sense. I mean, she’s the one with cancer, for Pete’s sake. It is her trip. And she’s the one who has suffered the brunt of all this, from a physical standpoint.

But as I’ve written here before, I don’t think most people realize just how hard cancer is on the “well” siblings. Imagine you’re five, six, seven, and your twin sister gets twice as much one-on-one mom or dad time as you. Imagine you miss out on planned vacations and activities because they aren’t possible thanks to your sibling’s illness. Imagine you have to deal with your sister being an abject jerk to you one week out of every three because she’s hopped up on steroids.

Most of all, imagine your sister is constantly being treated like a star while you get ignored, through no fault of your own (or any particular talent of hers). Imagine that half the time she gets gifts but you don’t. Imagine that sometimes it’s like people don’t even see you.

I have to give Elsa a lot of credit, though. She has gotten to a point where she can step outside herself and understand the whole thing. She knows — because we’ve talked with her about it time and time again — that a lot of people mean very well, but they just don’t understand. They’re not ignoring her on purpose, and it doesn’t mean she’s any less special and brave than Clio.

Not that it makes it any easier; but I think she has started to take a more empowered stance. She’ll tell people outright that she’s there. “I’m her twin sister, and I’m really brave, too.”  A lot of people don’t get it even then. But it makes me really proud of her for standing up for herself.

And, of course, we advocate for her constantly. It’s a tricky balancing act, figuring out how to do it so that people get the point, but don’t feel guilty. I just wish more people got it off the bat.

So listen, you flight attendants, you hotel staff, you roving Disney characters. Your kindness and generosity are most welcome and appreciated. But I am praying and hoping that you will see my other daughter, and make her feel special too.

Now excuse me; I have to go iron my princess dress.