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.

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“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.”

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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.

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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.

EB Awareness Week

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.

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Sometimes you wake up to see the sun rise and are met with darkness, clouds, a downpour of rain off in the distance. 

Unexpected. 


Sure, it’s not what I rubbed sleep out of my eyes to see, but the downpour left me wanting a drenching of my own- a Holy Spirit sort of reminder of who I am, who my Father says I am. And so, I listened while the wind blew and the waves crashed. 

My expectation was to be dazzled by color, drawn to praise. 

Instead, I was quieted by the storm, drawn to repentance. 

Unexpected. Good. 

Twenty-four hours later, my eyes appreciated the beauty of the sun rise in a new way, in a deeper way. My soul could process the beauty differently because of the clouds. 


Grateful. 

I used to believe that there would come a day when our family dynamic would feel “normal” –  that we would mesh together in a way that was seamless – that the memory of the time Before would be blotted out by the Present, that thoughts of the Future wouldn’t always be accompanied by some degree of anxiety.

Normal?  As it turns out, it’s just not for us.

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I believe that when our lives turned upside down halfway across the world that they were destined to remain upside down in many capacities.

I believe that when we saw the faces of the children staring at us as we looked through windows into crowded orphanage rooms we can never be normal again.

I believe that walking through specialist appointment after specialist appointment and living with the constant shadow of unknowns means that “normal” is a thing of the past.

I believe that seeing the rawness of pain associated with the loss of birth country, birth language, and birth culture will cause us to never be normal again.

I believe I will never ever EVER be used to people staring at our daughter and her scarred and wounded skin, and that pounding of my heart as I see the hurried glances is a part of who I am now.

I believe that adoption is breathtakingly difficult, and that the trip is just the start of the journey.  I believe that the longer your child is home the more difficult it becomes to explain the impact of past hurts, the more difficult it becomes to accept that while time is a great healer, the amount of time required is sometimes overwhelming.

I believe in accepting that the hard things we are called to do are HARD.  I believe that they will mold us and change us and out of that giant mess will come a beauty only seen when we throw ourselves into the arms of a loving Father, desperately and freely confessing that on our own, we are not enough for this great journey He has us on.

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I pray for a heart that would pound in a rhythm which sounds off-beat to the rest of the world.

I pray for eyes that would look for ways to love deeply.

I pray for a soul to find total satisfaction in Christ alone.

I pray for a voice to speak words of encouragement.

I pray for feet that would be quick to run to the aid of others.

I pray for hands that would hold loosely the things of this world.

I pray that every time I look into her dark brown eyes I would see the great work that the Father is doing in our family, that we are ALL learning what it looks like to love others beyond the natural boundary lines we would draw for ourselves.

I pray for daily recognition of the new mercies, steadfast love, great faithfulness, and hope given freely by the One who is walking with us on the good days, and carrying us on the hard days.

I pray to never desire the time Before, to never dread the work involved in the Present, to always carry hope for the Future.

Normal?

Never.

I got a box delivered to our house today.  It was sent by a friend and filled with wound care materials.  You see, this family found themselves with an excess of supplies when their six year old daughter passed away last week due to complications from Epidermolysis Bullosa.

I had avoided talking to Julianne about Georgia’s passing because, honestly, it felt too surreal even for me.  The two girls have birthdays just days apart, and they came home from China just months apart from each other.  Last fall, the girls had a chance to meet in person at an EB clinic, and though the meeting was brief, the memory of it stuck with Julianne.  After all, meeting other kids with her same rare condition is, well, rare.

I began to unpack the box, and naturally, she inquired about what was in it, and where it came from.  I gently explained that Georgia died last week, and my girl began to sob.  She buried her face in my shirt and grieved the loss of this little girl she barely knew, but felt some sort of connection to because of their shared circumstances.

I hugged her close and rocked back and forth, my heart broken all over again and I whispered, “It’s okay, we’ll get to see her again, right?”

Her face raised up, her tear-streaked face cracked a tiny smile, and she commented, “Yeah, in Heaven, Mommy!  And when we are there, we won’t have any more EB!”

She’s so right.  We grieve the loss of this little girl.  We grieve the circumstances in her life that made it so much more difficult than most people in America could imagine, or even care to imagine.  We grieve the suffering, and the pain, but we rejoice in the hope of Heaven’s healing.  I don’t know how I could have even said anything to Julianne without this HOPE.  It’s so real, almost tangible.  She knows deep in her know-er that Georgia is healed now, and the thought brings a smile to her face.  She knows deep in her know-er that one day she’ll be healed, too, and see her friend again.  No more EB.  No more pain from a traumatic past.  No more of any of it.  The thought makes a giggle bubble up inside of her, and she can’t contain it.

I still hope my daughter’s lifetime sees a cure developed from this condition, but if not God is still good, and hope of the eternal sort will still rule our hearts.

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Georgia’s family has asked that her memory to be honored via donations to either Children’s Hospital of Colorado, where her team of doctors treated her while stateside, or to China Little Flower, the organization that cared for her while she was in China.

 

Another holiday is upon us, and though this is the ONE day of the year our family values and celebrates more than others because of the sheer impact it makes on our Jesus-loving hearts, it’s still a holiday.  And we still struggle a bit.  You may not see much of your adoptive or fostering family friends this weekend, and I wanted to explain why.

The Egg Hunt.

Fun?  Yes.  I won’t disagree with you.  This tradition is one of our family favorites, and a favorite across the board in many American families.  But for some kids?  It’s fun with a twist.  It’s fun with a major sense of losing control over circumstances.  It’s fun with extreme anxiety concerning the number of eggs received, the amount of candy in the basket, the sheer amount of kids surrounding them.  It’s sensory overload, and an inability to cope with the noise and colors surrounding them.

It’s fun.  But not fun for everyone.

The School Break. 

Hurray!  A long weekend!  Fun, right?  Yeah, it’s fun.  Unless you’re the kid for whom schedules are life.  If you’re the child who panics when the norm changes, even if what’s going on is something enjoyable, school holidays bring the need to control what’s going on around you in ways that may disrupt family life to some degree.  Some of our children don’t thrive in a fly-by-the-seat-of-your-pants kind of environment, and so school holidays are hard for them.

The Family Gathering.

Regardless of whether the child’s extended family is supportive of their specific needs or not, regardless of whether your relationship with your extended family is good or not… family gatherings are yet another situation where our children may find themselves feeling overwhelmed and unable to regulate their emotions well.  For us, participating in our family Easter gathering is important, so many other activities tend to fall to the wayside for us to be able to do this one.  We have to prioritize differently, and manage our schedules differently.  It’s worth it, but it’s why you may not see much of us outside of this one event.

Church. 

We attend church very regularly, and serve regularly. Our children are very used to being at church, but our church, like many others, looks a little different on Easter Sunday.  There are more events to consider, and the normal schedule may look a little different on Easter morning.  We love it, but it’s another something to process as far as how to do these things as a family is concerned.

The Bottom Line?

Easter is the ultimate expression of Grace.  Jesus choosing obedience, even to death on the Cross so that we might have the hope of eternal life with Him forever.  This is the Best of News, the Gospel truth, and what we live for, and this grace is necessary because we’re not perfect.  We mess up ALL. THE. TIME.  There are many who think that families who foster or adopt live a little closer to Perfection, but it’s not true, not at all.  We depend on the grace of God daily, and during these more challenging, upside-down, topsy-turvy times of year, we hope for the grace of those who love us a little more, too.

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Friends, if you see us making the quick escape from the egg hunt, shoot us a text letting us know you were glad we made it, even for a short time.  If we RSVP “yes” to an event but end up as a no-show, check in with us and let us know you noticed our absence and you missed us.  If we look a little frazzled at the family dinner, know that we truly value being there, but that our mind is going in a million directions trying to help our child process what’s going on around them.  If you see us and wave hello and we completely ignore you, know that it wasn’t on purpose, our brains and emotions are on overload as we process life with our sweet little ones.

All of this may not apply to all adoptive or fostering families, and I’m not trying to make blanket statements, but one statement I believe I can make for all of us is this –  we love you, our village of supporters.

Whether we see you or talk on a daily basis, or not,

whether you are family or friend,

whether you know us in person or just “know” us via social media,

you are doing a grand thing in walking with us through these seasons when our crazy train seems to want to derail.  Jesus gives grace, and one of the ways He gives it is by giving us you.  You are showing love to the fatherless in a unique and special way by showing love to adoptive and foster families, and we see you.  HE sees you, and He delights in you.

 

 

 

 

Today?  Today we celebrate the fact that you are now SIX!!!

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You waited a long time to be six, my girl.  It seemed like a much longer wait that the norm, probably because your older brother was six during the whole year you were waiting to be six.  But now, you’re here!  You’ve arrived.  You are all the fingers on one hand plus one from the other, and you are thrilled to tell everyone you are FINALLY six.

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You’ve definitely changed a lot in the last year, sweet girl.  You’ve grown taller, more independent, and you started full time school.  You’re thriving this year, and it’s a joy to watch.  You are beginning to know who you are, and you’re liking what you find.  This year, you started taking dance class, and your teachers love you as much as everyone else who crosses paths with you.

Oh, and did I mention?  You’ve got some serious sass.  Sass for days.  And most of the time, it makes me giggle.

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Favorite color – pink and white

Favorite animal – ponies and unicorns

Favorite food – oatmeal with blueberries and eggs

Favorite movie – Moana, Frozen, and Little Mermaid

Favorite thing to do – play with my dolls

 What do you want to be when you grow up? – a doctor, and a princess

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This year you get to celebrate with your first REAL birthday party!  We ordered the pretty invitations, we reserved a fun place to play, and we searched for the perfect tutu skirt to pair with your birthday shirt.  You’ve had a countdown going for quite a while, and today is the day!  It’s time to celebrate YOU, Julianne.  You are so worth celebrating.

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Happy sixth birthday, Julianne!  We love you!

“Mommy, I have another blister.  Can I pop it all by myself?”

Her voice was so hopeful.  She knows what to do.  She’s watched us pop more blisters than I can keep track of during the two years we’ve had her home with us.

“I don’t know, J.  The needles are very sharp.  How about when you’re seven?”

I was hesitant.  She just turned six, so maybe I could buy myself almost 365 days before having to take this big step.  I confess that part of me just wasn’t ready to give this task over to her; I’ve only been her mama for two short years and I want more time to be the primary caretaker of all of her boo-boos.

“Mommy, I promise.  I can do it.  I promise.”

Giving over control of wound care is significant in her world.  It’s a step that says, “I trust you.”

And so, I did.

Ever so carefully, she pulled out the supplies she would need.  Sterile gauze, sterile needle, alcohol wipe.

She wiped the blister sites clean to disinfect them.

I had to help her a bit getting the cap off of the needle.

She took it from me with confidence and, while I watched, poked holes in those blisters and drained them.

And when she was finished?

“See Mommy!  I can do it!”

I’m so proud of my little butterfly and this big first.

She’s braver than most.

I did take a video of this for her own memories, but I’m not sharing that publicly.  I have uploaded a portion of the audio file… her little voice is too precious to not share.

It’s a joy to be able to share my heart at No Hands But Ours every month. This post is special to me.  I don’t pretend to know everything about parenting or adoption, or parenting through adoption.  But there are some things I DO know…

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This is what I know…

I know that time doesn’t heal all wounds.
I know that, sometimes, intentionally seeking out help is necessary.
I know looking different isn’t a bad thing.
I know that hearing a word of encouragement has more impact than I dreamed it could.

I know adoption can be hard.
I know adoption is a gift.
I know adoption isn’t for everyone.
I know caring for the orphan is sometimes hard, is always a gift, and is for everyone.

I know I can do things I never thought I could.
I know walking in obedience means being depending on God.
I know that He equips as He calls, and never leaves us stranded.
I know His mercies aren’t just new every morning, they are also fresh every hour and minute of every day.

Click here to view the rest of this post.

“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…

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