You saw my daughter today when we were out at Costco. I was just by the meat counter when I noticed you, noticing her.
A few steps further, I picked up a container of blueberries, my daughter’s favorite, and noticed you, noticing her.
A few steps further and you were right beside us, staring down at the little legs sticking out from underneath the lilac tutu dress, and she noticed you, noticing her.
I admit my tone wasn’t kind when I told you that there is nothing wrong with her as I quickly walked away. I didn’t even glance back as you called out, “what is wrong with her?” on top of my preemptive response.
I choked back tears and moved on to the paper goods aisle and pretended like the brief encounter didn’t bother me.
But it did.
I wish I could have calmly told you that she has Epidermolysis bullosa; that something IS wrong with her, but not in a way that affects you at all.
I wish I could have let you know about ways to learn more, ways to help; these things actually COULD affect you as there is no way to see and not want to help.
I know it looks bad to you, I know it looks like maybe I don’t take very good care of my child. Your thoughts might be compounded by the fact that it’s obvious she didn’t join the family in the same way the other three children, her siblings, did.
She has EB, and we can’t hide it. She actually looks REALLY good right now; a few weeks ago her legs were completely wrapped in specialized bandages because regular bandaid type products tear her skin when they are removed. The slightest touch sent the top layers of her skin sliding off of the base layer, and there was nothing I could do to stop it. Right now, her skin is holding together in a way that I have never seen before, and it makes my heart skip a beat to think this season of her life might be less painful than the previous season.
While you are curious, I am frustrated. I don’t understand what makes some time periods better than others for her. I wish I knew the magic formula to keep her skin looking as good as it does now, but then I’m reminded that even when she looks good in my eyes, in the eyes of the world there is something wrong.
Did you notice her dark almond eyes staring at you as you stared at her? She knows what you were doing. She has seen it before. She knows that to wear the dress she loves means to expose her legs and she doesn’t care, because we don’t care. She loves twirling and spinning in that dress, it makes her feel beautiful… something your words didn’t do. I know one day she may reach an age where the discomfort of strangers making comments like yours may be too much for her, and she will choose to hide her body from the world. But until then, I will let her wear the things she loves and be her shield from the arrows of unkindness that will be shot at her.
She is more than just lovely on the outside, you know. Her light shines so brightly from the inside out, a miraculous light that has not been dimmed by circumstances in her short life that are more than any person should have to deal with.
Dear fellow human… next time you are out and see a child who has something going on that is clearly not “normal”, try to not be so normal.
Normal means to stare, point, whisper.
Instead, be abnormal.
Wave and point out that the purple clip in her hair matches the purple dress she is wearing.
Tell her she has a smile that lights up a room.
Tell her her mommy is so blessed to have such a beautiful daughter, because I am.
She is a gift, this little girl is… a perfect gift… and there is nothing wrong with her.
For more information about Epidermolysis bullosa and ways you can help families with EB, check out www.debra.org.