“Mom.  One day, when I have good skin all over me, I can have earrings, right?”

*gulp*

Because, truth is, unless there is a radical gene-altering cure found, EB is a part of who she is, and will be a part of who she is for all of her days.

Epidermolysis Bullosa (n.) :  loosening of the epidermis, with extensive blistering of the skin and mucous membranes, occurring either after injury, or as a spontaneous and potentially dangerous condition…

“Well, you know, unless something changes, you will probably have EB for your whole life, even when you’re a grown-up. And that means that you might be able to have earrings, but you might not be able to.  It will depend on how your ears are when you’re older.”

She knows this.  We talk about it ALL. THE. TIME.   She sees the differences between my skin and hers, between the affected parts of her and the parts that are rarely affected.  She tells me she wishes she had skin all over; she considers the EB-affected parts of her to be not-good-enough.  I tell her all parts of her are skin.  Some parts have EB, and some parts don’t as much, but all of her is skin, and it’s all good.

“But Mom!  When I’m in Heaven, I will not have EB anymore!  And guess what!  I can wear earrings there!”

For now, her ears sport blisters and scabs as their adornment, though, and she finds joy even in that, telling me that her scabs look like earrings, and aren’t they so pretty?

Yes.  Absolutely.

You are beautiful, my girl.

The last day of February marks World Rare Disease Day.  It’s when people worldwide band together in an effort to make widely known the little known conditions they, or their loved ones, live with on a daily basis.

I’m often asked the same types of questions over and over by people curious about EB, so I’d like to address them again in honor of her, this day, and all others who live in quiet anonymity, their conditions not recognized by the flood of cash it takes to fund research for a cure.

  1.  “Will she always have this?”    Yes.
  2. “Will it ever get better?”  Unknown.  It’s possible.  It’s possible it will just ebb and flow her whole life like it does now.
  3. “Is there a cure?”  Not right now.
  4. “What does her condition require?”  Daily wound care.  Preventative padding/bandages/dressings to keep her fragile skin safe.
  5. “Does it bother her?”  More as she gets older, mainly because of the reactions of others.
  6. “Does it stop her from doing anything?”  Only when we make her stop!
  7. “Does it hurt?”  Yes. It’s also pretty itchy.
  8. “Is there anything I can do to help?”  Yes!  Visit www.debra.org and check out the ways to help families.  One of the biggest blessings in our life is the DEBRA wound care closet; they supply very expensive wound care items for families who may not have insurance coverage.  They also send boxes of supplies to EB families… those who are brand new to all of this and just starting out on the learning curve.  A donation in Julianne’s name would be appreciated!  
  9. “Is there a cream or lotion that would help her?”  Not really.  There are medicines that treat symptoms, some better than others.  But the root cause of EB is a genetic mutation.  Though it looks like it’s all on the surface, it’s actually deeper in the skin, and also affects internal parts of her like her mouth and throat.

Epidermolysis bullosa is not a new topic on this blog.  I’ve written a good bit about it because it’s something that has become a part of our lives and has changed us.  Seeing her persevere in the face of a condition with a genuine smile on her face brings me joy.  Don’t get me wrong, we have bad days…. really bad days, but she never lets the bad overtake the good, and I think that’s a lesson we all need to learn.  She’s a fighter, and she has turned me into a fighter.  This condition isn’t passive, and so we aren’t passive.  We face it head on, unafraid, knowing that no matter what, there WILL  be earrings in Heaven for her.   You see, this life we are living now is just the start.  We believe that there is more than this, that there is a Forever that blows our ideas about “forever” straight out of the water.  Julianne believes this, too.  She knows that her life now is just the beginning; that there is an eternity to be spent with the One who made her, and moreover, that the time after this life is over will see her clothed in a body free from all of the suffering it will know on this Earth.  EB?  It’s awful.  But it’s not everything.  Jesus?  He’s everything.

So yeah.  We pray for a cure.  We fight for it.  We help to fund it.

We also keep our eyes up.  Constantly seeking the God who put us together, the One who knew that our daughter would have to walk through this, the Giver of hope in all things, even in EB.


 

Some of my past posts about EB can be found here…

Visible

Lavender Jade

There is Nothing Wrong With Her

 

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: