When people see our butterfly for the first time, they generally have one of three reactions. They either :
1. Inhale sharply
2. Make a pained expression
3. Say shame
And whilst I understand this to be a natural reaction, especially given the extensive wounds on her face, neck and hands, I also know that it has a profoundly negative impact on her.
You see, our little butterfly is extremely perceptive and she’s fully aware that the first two reactions are reserved only for her,whilst her little sister gets a more welcoming and friendly reaction.
Whenever this happens, I see her retreat within herself, and she doesn’t come out again until those who’ve had the reaction either warm up to her and treat her ‘normal’ or until they’re out of her company entirely.
But I think the most challenging is probably when people look at her and say ‘shame’. I remember an adult with EB once saying that she hated it when people said shame to her, because it was as if they were saying there was something wrong with the only life she knew. It made her feel as if her life was somehow inadequate, because of the unique challenges she faced. And so to get away from it all, she simply braced herself when she knew she had to be around people, pretended not to hear their pity or snide remarks and prayed she wouldn’t break down or lash out in public.
Hearing passersby ‘shame’ our butterfly is heartbreaking as I see her retreat into her cocoon, and all the progress we made until that point is undone.
It’s even worse when it’s done by a group of people at the same time, on a regular basis, because she retreats so far into herself, that it can take weeks for her to get back on track again.
I’m not saying ignore her, that’s hurtful, but don’t stare either.
What I am saying is that when you look, try to look at her with an eye of compassion, an eye of love and impart a kind word.
First reactions count most with her, and when we start off on a positive note, great things emerge.
