Here's to Being Different

Kids stare at me. Not the idolizing, "I-look-up-to-you-and-worship-you" stare. It's more the "Whoa. What-in-God's-name-is-WRONG-with-that-guy?!?" type of stare. 

You see, I'm partly paralyzed on my left side. Only the right side of my mouth moves. My right arm is much bigger than my left. In fact, my left arm mostly just swings uselessly at my side. I'm unable to swallow, so I have a feeding tube inserted into my stomach and dangling about 8 inches down to peek out of the bottom of my shirt. The inability to swallow also causes me to drool at inopportune moments like at the smell of food when I'm especially hungry, or at the sight of the Denver Broncos cheerleaders (I'm just joking Betsy; I only have eyes for you).

"What is that ugly man doing with his coffee, Mommy?"

All this means that when I first volunteered in Grace's elementary school classroom, kids had a hard time focusing because they were so busy staring at me. Or, when I eat through my feeding tube out at a restaurant, children are mesmerized by the sight of me eating. At one particular restaurant I was eating with my family and a young boy walked around my table (TWICE!), saying nothing and staring with wide eyed astonishment as I pushed blended food into my stomach.

Does it bother me? Yes, I have to admit that sometimes it does. I don't enjoy feeling like some sort of circus freak show.

OK, I guess I do look like a circus freak, but doesn't she look adorable?!?

I think many people who read this blog can relate to the way I feel. I'm not saying you're all circus freaks...well...maybe you are...but it's not something I'd say here. I'd say it behind your back or on a public forum like Facebook. 

Actually, I think everyone has experienced standing out in the crowd. Parents with tubefed children who feed their son or daughter in public. Or parents whose child has autism, or cerebral palsy, or Down's syndrome. Anyone with a disability or disease that makes them publicly conspicuous understands. What do we do about it? Many people retreat from the public eye. They fear going out. They imagine what others are thinking about them. What are they whispering to their friends? Are they quietly laughing at my infirmity? 

I used to hate tubefeeding in public. I forbid anyone from taking photos of me in the act. When our family went out to restaurants, I would just sit and stare at my wife and daughter eating. "No, waiter, nothing to eat or drink for me; just hurry up and bring the bill so we can get home and I can eat."

Everyone who's adopted an Asian child knows what I'm talking about here. We adopted my daughter, Grace, from China in 2008.

The moment Grace became our daughter, July 23, 2008, Nanchang, China

Many parents of foreign-born children have experienced being stared at because we look different. We are white parents with children who look nothing like us. We all know how it is when we're sitting in the mall food court and we can feel eyes on us. Are they silently judging us? Do they look at us with pity? Are they looking down on us? We know they're raising questions in their minds and answering those questions with their own misconceptions and prejudice. Just come out and say what you're thinking! In our minds, we imagine their ignorant inquiries and our sharp responses:

"There are so many kids who need adopting right here. Why adopt from China?"

"You're so LUCKY you didn't have to go through labor!"

"Do you feel like she's not really yours?"

"I couldn't adopt. No way I could love a child that's not really mine."

"From a distance, you look like you could be her real mother!"

This family seems pretty ordinary to me

But my daughter taught me to look at things differently. When she sees another kid staring at my tube, she speaks right up, "My daddy can't swallow so he eats through a tube." She'll say it to anyone. "My daddy had cancer and his arm won't work." Even if I haven't shown my tube. If someone just offers me some water, or a bite to eat. "Daddy has a feeding tube. He puts his food in a blender." She speaks without apology--without embarrassment. "Daddy can't run." "Daddy you're spitting." "Daddy used to play guitar, but he can't now." She even mimics my smile; only pulling up one side of her mouth and squinting one eye as she gives me a thumbs up. My daughter isn't bothered at all by my appearance. I'd say she's proud of my differences. 

Daddy's girl

My six year-old has been my example. I volunteer in her classroom as much as I can. I've started a blog where I post pictures of myself tubefeeding. At swimming pools, I walk unashamedly with my shirt off, displaying my tube, my emaciated arm, every inch of my disfigured body. Well, not every inch; pretty sure I'd get arrested for that.

She brings me out of my shell

In the same way, our differences--whether we're caucasian parents of foreign children, parents of disabled children, or suffer from some physical deformity that makes us stand out in the crowd--needn't be something to feel self-conscious about. On the contrary, we should all be proud to stick out in public. Just like Grace with my disability, we need to speak up to banish others' ignorance. I've learned that standing out in a crowd can be awesome. I love introducing kids, and adults, to the idea that some people eat differently. I love showing people that families can be unconventional too. Sometimes parents don't look like their kids but that's ok. So here's to being different!

Don't be like all the other penguins