“A severe genetic disorder that mainly affects the skin. Infants with this condition are born with very hard, thick skin covering most of their bodies. The skin forms large, diamond-shaped plates that are separated by deep cracks (fissures).”
Courtney’s blog, which documents her baby’s journey, is awe inspiring for parents’ going through the same sort of circumstances as well as others who have questions.
Courtney’s message for parents on how to respond to your child when they ask questions on children’s appearances is perfect!
Parents: What I Wish You Would Do
“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.
I hear you, and I see you, and 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 invite us into these conversations 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 ichthyosis, 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. I hope you invite us into your conversation. 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 be a positive opportunity for your child to learn how to respect and appreciate physical differences.”