Want to Know What It's Like to Go Out in Public When Your Child Uses a Wheelchair?

 

Let’s say you have a clown baby.

Now, before I continue, let me be clear: I know this sounds crazy, but just go with me for a moment. Use your imagination. You can do it.

OK, like I said, you have a clown baby. By which I mean your baby is dressed like a clown. Your little bundle of joy is sporting a round red nose and a powder white face. The kid’s got a painted smile lacquered from ear to ear and a puffy red wig that would make Ronald McDonald green with envy. And then there are the shoes – don’t forget the shoes. Your clown baby has got big shoes. Long and floppy, bulbous and yellow. With neon pink laces for good measure.

Can you picture it? Can you feel the weight of this rainbow-colored darling in your arms?

Wonderful.

Now, imagine you’re walking through the mall with your clown baby toddling along beside you – maybe you’re holding hands or maybe you’ve got them on one of those baby-leashes (no judgment) or maybe you’re corralling the little rascal towards Starbucks so you can snag some caffeine before it’s time to go – when, suddenly, you raise your eyes and glance around. You see fellow shoppers moving to and fro. And what do you imagine they’re doing?

You see it don’t you?

They’re all watching your clown baby.

All of them.

Most of them are sneaky, stealing quick glances that bounce from you to your clown baby to the shop windows then back to your clown baby in a continuous loop. Some of them are shameless, grinning good-naturedly and nudging their companions saying, “Oh my goodness – do you see that?! So cute.” Children are the most dumbfounded, dragging behind their mothers, heads turned, jaws hanging slack. You’ve seen children stumble directly into oncoming pedestrians, solid walls and – on one occasion– a metal pole because their eyes were fixed on your clown baby rather than on the path before them (true story).  Groups of teenage girls are the loudest with their happy gasps and sitcom worthy “aww!”s. You once caught the entire Sbarro’s pizza line smiling and waving and discussing your clown baby together.

And at first you think, “My goodness – it’s like these people have never seen a baby dressed like a clown before!” But then you realize, they probably haven’t. They saw one on a poster once or on the news when the circus passed through town, but in real life? This is their first time. Of course they’re making a fuss. Can you blame them? For heaven’s sake, you have a clown baby.

Strangers stop to chat. “We’ve never seen such a well-dressed clown,” they say. “We didn’t even know they made clown noses that small!” 

“Seeing your clown baby just makes my day!”

“God bless you and your clown baby.”

“Your clown baby is something else. Just precious!”

You’ll nod and smile. You’ll small talk and wave. You’ll tell your clown baby to say hello. You might even enjoy it a little. That’s OK. I mean, if you think about it, are you really surprised? What did you expect? Is there anything cuter than a clown baby? They’re novel and different and surprising. They’ve got fantastic hair and flowers that squirt water. People certainly don’t see them every day.

Besides, no one is being cruel. Everyone is being positively dramatically spectacularly kind. Do their stares and smiles and comments make you angry? Of course not. 

But they do make you a bit, well… tired.

Because you quickly realize it’s not just your clown baby everyone is watching.

They’re watching you too.

They’re watching to see if you’re happy. They’re wondering if you’re sensitive about your clown baby or worn down by all the toil and hardship that goes into caring for a clown baby (they’ve heard that baby clown makeup takes a full hour to put on!). They’re taking their cues from you. They’re learning from you. And since this may be the only clown baby these people ever see, you feel immense pressure to convey to them the truth of your circumstances – to show them much of what they think they know about clown babies and the people who love them is wrong.

So you’re approachable. You’re open. You smile. 

Come to think of it, you haven’t frowned in public since your clown baby was born.

And sometimes that’s hard.

It’s hard because even though you just came here to return one ill-fitting pair of leggings and you’re frustrated because clown baby is swiping all the gosh darn sunglasses from the kiosk display and tossing them willy-nilly onto the floor and you’re this close to really losing your patience… you can’t show it.

Because you’re not invisible. You do not blend in. And you’re afraid if you reveal even a hint of discontent, all those strangers behind all those watchful eyes will think one thing:

“Well, of course she’s stressed. Not surprising, really. It can’t be easy… after all, look at that baby of hers.”

So you grin and you chat. You get your Starbucks while your clown baby tosses coins into the fountain.

And you hope your smile is making a difference, however small. So maybe, one day, when your clown baby is a clown adult, the world will be ready for all the wonderful things he will do.

In the circus.

Or wherever he wants to be.

I know this is completely ridiculous, but I was trying to explain to a friend what it’s like when we go out  and this is the best I could come up with. At first, I thought maybe I was imagining all this, but we’ve gone out with enough friends and family members to have the oddity of our situation confirmed over and over again. As my sister said “Wow — everyone is looking at us. It’s kind of… a lot.” Yes, it is.

So, what’s it like for you? If your child has visible differences, can you relate? Does anyone else find themselves constantly smiling in public because you know people are watching? How do you think all of this affects our kiddos? Does our response affect our kids? If you don’t have a child with a disability, what do you think when you see a family like ours out and about?

This post originally appeared on What Do You Do, Dear?

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