When my daughter asked why people always question her appearance

She gazed out the window as we pulled out of the grocery story parking lot, a look of thoughtfulness across her face.

“Mama,” she said in a tone not hurt, but pondering. Perhaps a little confused. “Why does everyone always ask why my face is red?”

My body reacts – chest tightening, stomach turning – each time I am presented with this kind of situation… an experience where Brenna’s skin differences are called to the forefront, when I know all she wants is to engage as a typical child, not as someone who is viewed as so “different” that all conversation and reaction revolves around her skin.

I was glad she couldn’t see the strained look on my face, because she notices the slightest changes in expressions, as I responded. “Well, your skin looks a little different that most people’s skin. And since those people haven’t seen skin like yours before, they want to know why you have special skin.”

She contemplated that and was appeased by my response.

But I didn’t give my full answer to that question on that car ride home. There is a second part to explaining why we field questions about Brenna’s appearance nearly every single time we go out in public.

Yes, adults want to know why because they are curious, maybe even concerned. But the hard truth is that they then choose to ask why immediately because they place their own curiosity above another person’s feelings.

We’re not four-year-olds trying to figure out the world. As adults, we know people are different. We know disabilities and differences exist, and we know what genes and chromosomes are, and we know that accidents and war and illnesses happen.

So maybe the first words out of our mouths shouldn’t be a question about someone’s appearance or disability. Maybe the first words out of our mouths should show that we value another person as a fellow human.

I believe that God gives us a unique opportunity when we encounter someone who is different than we are: to choose connection over curiosity.

When we can begin a conversation with a smile, with a “hello, how are you doing today?”, we seek to bridge by recognizing our sameness instead of divide by pointing out our differences. It is in this same regard that we can address a child’s (often inevitable) questions about differences – helping them to relate, showing them how to connect by introducing themselves, and educating them that we are all different.

I’ve been told by other adults that they feel uncomfortable when they see someone with a disability or physical difference, not knowing what to say, how to say it. Let’s not make this harder than it is; simply treat them as you would anyone else. A person is a person is a person.

I offer this gentle reminder to myself, to my children, and to others: while this is the first time you may have seen this condition, disability or physical marking, it has likely been the opening question or topic of conversation for that person nearly every time they go out in public.

I can’t speak for other parents who have children with differences and disabilities. But many whom I’ve talked with agree that they don’t mind educating about their child’s condition or illness… yet they would rather not have to field questions all day long. Life is much more beautiful when we can see our sameness first, and then find appreciation in learning about our differences.
A couple of years ago, I was pushing my kids on the swings at the park on a rare warm day in the late winter. We were thrilled by temperatures that were ideal for Brenna (since she has trouble regulating her body temperature and the outdoors can be tricky) and jumped at the chance to spend some time outside.

A woman was pushing her child next to me and pleasantly struck up conversation with me. When she mentioned how nice the weather was, I told her I was especially glad for the temperature because “my daughter has a skin disorder that sometimes makes it hard to be outdoors if it’s too hot or cold.” And the conversation continued on from there.

I’m sure she was wondering, and I gave her the answer. But it was within a nice conversation where she made it clear that we were just another family at the park to her. She chose to connect with us first, instead of immediately asking. She chose to listen before questioning.

What an opportunity we are given when we meet those around us every day who are different than us…and what a gift we can give, and receive, when we choose to prioritize another person’s feelings and humanity above satisfying our own immediate curiosity.

When A Little Boy Completely Surprised Me With His Reaction to My Daughter’s Appearance

It was a lively family party, in preparation for a wedding weekend, and the house was full of family members from all over the country – some of whom I hadn’t even met yet or at least hadn’t seen in years.

We exchanged hugs over and over as new people arrived to help celebrate. The kids ran around gleefully outside while the adults loaded up their plates and caught up.

I kept seeing a little boy pass by, probably around 10 or 11 years old. He was a big kid, not much shorter than I am, definitely athletic. And while the other kids paid no attention to me and Brenna, this boy would hesitate at my daughter, wrinkle his nose slightly and furrow his brow a bit, as if he was trying to figure out Brenna’s appearance and wasn’t sure what to make of her skin.

Finally, by the fourth time he passed by, he slowed down until he was standing right in front of her. And I admit – I braced myself for what I thought was coming: a question perhaps, or maybe even a not-so-nice comment about her appearance. I felt a little swelling of annoyance start build up in me, threatening to spill over into upset.

But then he knelt down so that he was eye level with Brenna. And this tough-looking preteen all but cooed at her: “Well, aren’t you just the PRETTIEST little girl? I LOVE your pretty dress! Are you having fun?”

Oh. My. Heart.

My expectation of needing to come to Brenna’s defense melted away in an instant. I was absolutely, completely wrong about this child’s intent – and joyfully so.

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Defensiveness can turn our insides ugly – fast. Defensiveness prepares us for a battle before an actual battle cry. It finds us ready to fight, ready to defend, ready to hurt in return for the hurt we are anticipating or experiencing.

Maybe most importantly, defensiveness turns off our ability to listen well. We don’t care what someone else is saying, what they’re feeling or where they’re coming from – because we’re already upset, ready to fight back at the perceived offense. Fight or flight has kicked in, and it doesn’t matter if the threat is real or in our minds.

Pushing back against my tendency to rush to the line of defense turns my focus outward, instead of inward. It has helped me to try listening beyond what others are saying in order to better understand what they are feeling. When I remind myself that I am not necessarily under attack when someone is expressing a differing view or asking for more information, I can usually see that person is hurt or proud or many other feelings that actually have very little to do with me.

I won’t pretend it doesn’t hurt when a rude comment is made or another child uses an unkind adjective to describe our sweet girl. But we have been surprised by the good of people too, again and again. And just as we don’t want anyone to make assumptions about Brenna’s story, our story, we try not to assume negatively about the reactions of others before giving them a chance.

On most days, I would love to experience an outing without pointing or questions because in all honesty, it does begin to feel intrusive. While I want others to be educated about Brenna’s skin, what I desire even more is for people to squelch their own curiosity and offer a hello or tell me how cute my kids are. I can only dream of a world where we could all learn to extend a little more kindness instead of judgment – a world in which we stood more assured and didn’t have need to question others, or ourselves.

Defensiveness can lead to a growing anger and resentment deep within ourselves. But through offering grace, kindness can be mustered up. And I’ve found that when kindness is extended instead of anger, it builds self-confidence and contentment…and even connection.cIMG_1495

A while ago, there was an older gentleman behind us at McDonald’s, and he started speaking to me before I was paying attention. I caught something about “keeping a hat on” Brenna, and my face started to get hotter, thinking it was the beginning of a lecture about keeping a hat on my kid when out in the sun so that she doesn’t get sunburned (not the first time this has happened.)

“What was that?” I asked him, pushing back against my rising defensiveness.

He repeated his comment: “I was just saying that I don’t know how you get her to keep a hat on. My grandkids just pull them right off!”

He smiled at us. “She’s sure a cutie.”