My daughter has a skin disorder. This is how I wish others would ask about it.
As we enter the playground area, your child immediately points to mine, calling loudly, "Mom, look at HER!"
You quickly hush him, calling him to you to quietly reprimand him.
You’re at the end of the same grocery store aisle when your child catches a glimpse at the baby in my cart and asks, "Why is that baby so red?"
You practically put your hand over his mouth to stop as much of the question as you can while hurrying around the corner without looking back.
Your children freeze, staring open-mouthed at my daughter at the library, and you get a rising panic in your eyes as you try to distract them to look anywhere but.
I recognize all of this unfolding, nearly every day. I hear all of the questions. I glimpse all of the pointing out of the corner of my eye. I notice all of the whispered comments.
My 4-year-old daughter Brenna was born with a genetic skin disorder called Harlequin ichthyosis, which means her skin doesn’t work well and builds up too quickly. The rare condition leaves her susceptible to infections, unable to sweat, and with an appearance that looks like a severe sunburn all over her body.
Because of this, Brenna is the recipient of comments, questions, and stares nearly daily, and as her mother, I feel it all deep within my heart. And it makes it worse when you then try to "hide" it from me, from us.
You’re embarrassed, and I understand that. But we’re both parents trying to do our best, and we both love our kids fiercely. And when you try to hide these obvious conversations that are happening right in front of us, it feels like you’re hiding from our family. It feels like the small insignificant gap between us that your child has noticed has now grown into a wide-spanning canyon that no one wants to cross.
What I wish you would do? I wish you would leave this conversation with your children open to me and my family, so it might become with us, instead of about us.
I wish you would close that small gap by relating to us as you would to any other family on the playground instead of making the gap bigger by treating us as unapproachable.
When your child points and tells you to look, I wish you would respond clearly, "Yes, look at that pretty little girl. It looks like she’s having so much fun playing, just like you are!"
When your child asks you, "Why is that baby so red?" or "Why does she look like that?" I wish you would answer honestly: "I’m not sure, but the way someone looks isn’t important. We all look different from each other, don’t we?"
I wish you would encourage your child to say hi and to ask my kids’ names.
I wish you would apologize without feeling ashamed if your child is offensive right in front of us: "I’m so sorry, we’re still learning how to ask questions respectfully." It also goes a long way if you tack on "Your daughter is so cute. How old is she?"
And above all, I wish you would talk about differences more often.
I wish you would read to your child about differences, and I wish you would positively and naturally converse about various kinds of differences, from wheelchairs to birthmarks, from Down syndrome to skin disorders, from racial differences to wearing glasses. Ultimately, I hope that our children learn that if they have questions about someone’s appearance, they can ask you later, privately, so that they don’t hurt anyone’s feelings — because, after all, how we treat each other is much more important than how someone looks.
So next time, I hope you don’t hide. Questions will inevitably exit your child’s mouth about someone who looks different than themselves. Instead of a steep divide that places our family on the other side with a "do not look at and do not talk to" sign, I’d rather this become a positive opportunity for your child to learn how to respect and appreciate physical differences.