Epidermolysis Bullosa (EB) is a group of inherited skin disorders. The last week of October every year is EB Awareness Week. Since it is known as “The Worst Disease You Never Heard Of”, we choose to share bits and pieces of our life with our butterfly, Julianne. She is a gift to us from God, and the things that have changed about us since she came home is from China in 2015 are too many to list.
“Mom, sometimes kids ask me what’s on my arms, and I don’t really like it.”
“Well, what do you tell them?”
“Nothing. I just say nothing.”
Her reality means that she’s going to be asked these questions for a lifetime. I know I won’t always be there to fend off the curious stares, or to shield her with my body when she feels uncomfortable. And so these conversations happen.
“Why don’t you just tell them that you have EB? You can tell them that this is the way your skin is, but that you love to play, and maybe you could play together?”
She sighs, and tears start forming in her eyes.
“I just wish I had regular skin, Mom. I wish I didn’t have EB.”
I can tell she doesn’t always believe me when I tell her how beautiful she is. I know that she sees the glances and hears the whispers. She’s finally recognizing that people stare at us not only because she is Chinese and I am not, but because she looks different in a way that transcends ethnicity.
She runs her fingers up and down my arm and whispers that she wishes her skin was like mine and my heart breaks.
If I could choose for her, I’d choose skin where her scars have faded and her wounds are closed.
I’d choose a life where she could enjoy the South Texas classic appetizer of chips and queso, something she cannot do now because the sharp edges of the chips cut and wound her mouth and throat.
I’d choose nights of restful sleep where she isn’t plagued by the persistent and frustrating itchiness associated with EB.
I’d choose a vocabulary for her that doesn’t include words like “needles” and “barium swallow study”.
I’d choose outings with family where the double-takes don’t happen, where the gazes don’t follow her.
I’d choose a bath time experience that isn’t overcome by anxiety knowing that the pain of the open wounds will be more than she can handle.
I’d choose the sparkliest, pinkest, most girly-girl shoes without wondering if they will rub blisters on her tender feet.
I’d choose for her to run without fearing the fall.
I’d choose for her to be comfortable in her own skin.
I’d choose joy for her… but then I realize… she already has that.
She has the fragile skin, and joy.
She has the wounds, and joy.
She has the different food choices, and joy.
She has the crazy intense itchiness, and joy.
She has the medical vocabulary she shouldn’t have, and joy.
She has the anxiety associated with pain, and joy.
She runs without fearing the fall, she dances without fearing the consequences.
Yeah, EB basically sucks. No other way to put it. In fact, saying it sucks is being kind. Language typically used to describe this thing can run toward the salty side on a bad day, ya know?
The daily wound care, the pain, the stares.
The dedication of a closet to medical supplies, the doctor visits, the whispers.
The limitations placed on her, the anxiety, the knowledge that this skin she is in is different from the norm; it’s enough to make a sane person a little crazy, yes?
But even with all of that (and more)… she is joyful.
She knows that little things are big things in her world, and every little thing brings her joy.
I see her pain and it used to make me roll my eyes a bit when I hear others talking about their own experiences, experiences I might have classified as “lesser” in my mind. But then I see her reaction, and it’s straight up compassion. She knows what it’s like to hurt, and she hates seeing other people hurt.
I can learn a lot from her. I have learned a lot.
You are a rare one, my girl and you are making me rare, too.
For more information about EB, check out www.debra.org.
There are many different ways to help. DEBRA sends supply boxes to families with newly diagnosed babies, they also send supplies to families who may not have insurance to cover the cost.
Another great resource is EB Research Partnership, which is dedicated to helping to find a cure for this devastating condition.