Epidermolysis Bullosa (EB) is a group of inherited genetic skin disorders. There are five major types of EB and within each type there are subtypes. People affected by EB are often called Butterfly Children when they are younger as their skin is as fragile as a butterfly’s wings.
Though it is a debilitating, painful, and currently lifelong condition with no cure available, people with EB live life to the fullest; they refuse to let EB win.
Our life with Epidermolysis Bullosa officially began at the end of January, 2015 when we traveled to China to bring home our daughter. Though we were matched with her for about nine months before travel, and knew she had this condition, it’s very difficult to judge what the severity of EB will be like once home due to a number of factors.
Often children in orphanages with this skin fragility will be cordoned off from others; playing with other children increases the odds of injury, so this is seen as a protective measure. Once home and living a more active life, adoptive parents often see that their child’s skin becomes worse rather than better.
This has definitely been the case with our daughter.
And yet now? She laughs with a full belly laugh we never saw before.
Now? When she smiles her whole face smiles.
Now? She has come into her sassy personality and she owns it.
EB… you lose.
“Hey Mom, I think this blister you need to cut open with scissors. It just keeps refilling, you know?”
EB requires daily wound care, and at the ripe old age of six, our daughter can look at a wound and tell me what needs to be done. Yeah, I know what to do by this point, too, and I could just brush off her comments. Like other mamas who parent children with EB, my learning curve was abrupt and steep, but it empowers her to be able to tell me what she needs done, and so I ask her questions and let her participate.
At the ripe old age of six, my daughter can take an 18-gauge needle, a 4 X 4 square of sterile gauze, and an alcohol wipe and decompress a blister. The first time she did this, I supervised closely. After several experiences, she now comes to me, shows me the blister, asks if she can pop it and after receiving the green light, goes and does it herself. Could I do it for her? Yeah. And I do. Every day. But on occasion, she wants to do it, and that’s okay. She’s showing EB who is boss. She’s taking control over a condition where she seldom has control.
EB… you lose.
One day after school she told me her big toe was hurting. Because this was her dance practice day, I checked it out immediately, but didn’t notice anything outstanding wrong with it. She was limping a bit, so I asked if she wanted to skip dance that day and go home to rest, but she said, “No,” so we went to dance.
I checked on her about fifteen minutes into the class, and with tears trickling down her face she said she couldn’t do it anymore. Her teachers praised her efforts, telling her how great she did, and I picked her up and carried her out.
This girl of mine loves to dance. Even though she dances with pain, she dances because she loves it.
EB… you lose.
Every time my girl visits the school nurse we get an email notification about the event. We are blessed beyond measure to be in a small private school we love, with a full-time nurse who was willing to learn the ins and outs of wound care specifics related to EB. However, our nurse has a few things she doesn’t do. One of those is pull teeth. Those pesky little wiggly teeth are sent over to the second grade teacher who doesn’t mind pulling them at all. Pulling teeth just gives our sweet nurse the eeby-jeebies.
Another thing she doesn’t do is fingernails. Pulling them off, that is. Though she has not been presented the opportunity to remove fingernails much in the past, with a butterfly child in the school, the opportunities are more frequent. Nail damage is common with EB, and my girl is missing several nails, some of which never grow back.
I recently received an email notification from the nurse reporting that our girl presented to the clinic with a loose nail, and that she took care to secure it before sending her back to class. I giggled a bit, and later at home removed the offending nail from its nailbed. As we talked about the school day, Julianne giggled, too. She knows that Nurse Robin takes care of her, but she knows when to draw the line with the fingernails, and I think she enjoys pushing the buttons that prompt the eeby-jeebies. She’s got a sense of humor, my girl.
EB… you lose.
Don’t get me wrong, wound care sessions can be brutally horrific on days. There are plenty of times when I come away from bath and bandage time emotionally drained and angry that I have to see her in so much pain. There are days when I want to punch a wall, days when I cry out to Heaven, “WHY?!?”
However, we also have our fair share of laughs during these times every evening. We have the deepest of conversations about China, her China mama, and family during these times. We talk about who she is – that EB is just something she has, that it doesn’t define her. We talk about her worth in Christ and the gift she is to our family.
She has changed us. We are less likely to judge others, we are more compassionate. We take time to understand the place others are coming from. We know that hard things make us stronger, especially when we face them together. We know that we aren’t typical or normal by any sense of the word, and we’re okay with that.
EB… you lose.
There was a time when hope seemed distant and intangible. There is no cure for this condition my daughter lives with, and that knowledge can weigh heavily on a mama’s heart. Rather than responding to the inquiries of others with words of hope for the future, my responses became abrupt; no, there is no cure, yes, she will always have this. Hope is easy to carry over short distances but becomes heavy the longer you hold it. Even in my despair, the One who made her whispered to the weary part of me,
“I see you.”
“I see her.”
“I will carry you when you cannot carry yourself.”
“Don’t give up hoping.”
And so, I continue to hope. There is research being done now, there are promising stories to be read about work toward a cure. These things encourage me, and yet even without them, I still have hope because it’s something that goes beyond what may happen to her during her lifetime. She may be cured one day on Earth, but I know she will experience full healing one day in Heaven. This hope is one that is worth holding even when the days are long and her pain is other worldly. One day her scars will fade, her wounds will close, and the concept of pain will be not even a distant memory.
On that day, EB, you will have lost in a permanent sort of way.
But as we cling to that hope even now… EB… you lose now, too.