Our journey as a family into EB adoption started with eczema.
True story.
Out of the three biological children we already had, two of them had big time problems with eczema. So, when one day I was scrolling down the waiting child list on our agency’s website and saw “dermatitis”, my heart leapt.
Dermatitis? I mean, hadn’t we already been dealing with that for a few years already??
With heard pounding, I requested her file and we put it on hold.
With the “yes” already forming in our hearts, we did our due diligence and researched everything in her file, and had several medical professionals take a look as well. As this process occurred, we started seeing a diagnosis we had never heard of before… Epidermolysis Bullosa. We had NO clue what this was. It’s not called “the worst disease you never heard of” for no reason, after all!
After paying for an extra section of lab work to be translated into English, we had those two words in our life now. She clearly had something more than just “dermatitis”, but we knew she was ours. We said “YES!” to this girl; to this daughter.
In the months leading up to travel, I became an honorary doctorate in the field of Google Research. I looked up everything I could find about EB, read many a medical document and subsequently pretended to understand it, all in hopes of getting a better picture of this rare genetic disease. But until we saw her face-to-face; until her care was now our responsibility, none of it was real. I could talk about it nonchalantly, but the reality was that we were kind of clueless until January 26th of this year. That’s when the REAL journey began!
She walked into a little room, and there was our daughter. All of the feelings were being felt right then. Joy, Fear, Joy, Excitement, Joy, Apprehension, Joy.
Julianne has a milder form of Epidermolysis Bullosa. There are four major types, with sub-types within each type. They can range from being barely noticeable, to generalized blistering at birth and internal involvement. None of the types are “easy” for the person that has it. We didn’t know what to expect, but when I saw her in person, I have to confess I was a little shocked. The scars that looked faded and old in her pictures were in fact red and angry.
Truth: it was more than what I was expecting and I felt a little overwhelmed.
When we did our first diaper change, we saw the BIGGEST blister I have EVER seen on a human knee. For real. I mean, we knew she would have blisters, but this thing was like a blister on steroids or something! SO. BIG. I took out the supplies that our dermatologist had listed for us to bring, and went to work on that bad boy. We soon realized that blisters that large are not the norm for Julianne. Those are the result of the blister not being treated properly. With EB blisters, a proper decompression (popping session) is necessary. Left alone, they just keep growing, and can become very painful. Not to mention when big blisters are finally popped, there is a greater chance for infection because of the amount of raw skin that is now opened up. Our time in China was an EB Boot Camp for us! We ran out of supplies, and had to go find replacements at various pharmacies. It was pretty comical at times, but we made it work.
Coming home has been full of lessons in EB care. New family means new experiences, which has meant even more new boo-boos. These boo-boos are worth it to us; each new wound an indication of fun being had, of new things being tried. Riding a bike! Jumping on a trampoline! Rolling around in the grass! Running around the cul-de-sac with her brothers and sister like a crazy person! All create new hot spots to deal with, but the pain is worth the experience that was acquired.
If I had to boil down what life in our family is like with EB and with adoption, I would say “wound care.” It’s pretty much constant. Every morning we do a boo-boo check. We look for new spots that require treatment, we decompress new blisters that may have formed. We grease her up with some heavy-duty cream to help her scars soften. We bandage what needs to be bandaged, and leave open to the air things that need to air out a bit. The process happens again in the evening, and throughout the day as new wounds are formed.
Julianne is mainly affected on her arms, and legs. Her feet, ears, neck, fingers, and forehead are often the site of wounds as well. For us, daily life looks like buying clothes a size bigger to prevent rubbing on her skin. It involves trying multiple types of shoes out to find a pair that fit her feet with minimal blistering (she can totally rock the Crocs + socks look!). It looks like limiting her time out in the heat, and understanding that overheating is part of her EB (spray mist bottles with fans attached will be a permanent part of our South Texas summers!). Pre-adoption, and during our file hold, I had to work through a lot of anxiety about if our family full of rowdy young’uns was the right fit for her. The reality is that even if we put her in a bubble, the constant itchiness of her skin would cause her to wound herself due to scratching anyways.
Bottom line: wounds happen and wound care happens.
Caring for her skin is really the easy part of all of this. Our eyes are now fully open when it comes to Julianne’s EB. We know that one day we’ll do genetic testing to find out exactly what type she has, mainly for her own knowledge, but at this stage, knowing the type she has wouldn’t change the care she receives, so there’s no need to rush.
The wounds on her heart? Those are the ones that cut much deeper. When a new blister forms on her skin, it has to be dealt with right away or it will just keep growing. It will mutate from being a little spot into being a giant-on-steroids thing. But, as with any adoption, the wounds on the outside aren’t the only wounds that need healing. Soul wounds, heart blisters formed by trauma have grown into something they should have never become, and eventually left behind telltale scars.
Three and a half years in an orphanage caused much blistering of her heart. They were left unchecked. And even though we can pop those nasty pockets of abandonment, fear, having to fight for attention, even though we can rub in heavy-duty cream loaded with love, affection, plenty to eat, hugs, and kisses… still the scars remain. They are red and angry marks on her heart. They make her fight for attention, fight for items she deems valuable and cry out while she is sleeping for her mama. They make her desperate to have someone there when she wakes up at night, and fearful of falling asleep alone. They make her crave structure and struggle when the structure becomes more flexible.
On our first day of the new normal I confess, I cried a river of tears. I was SO overwhelmed by the enormous thing the Lord has done in our family! He took us from a family of 5 to a family of 6, and now we have this wounded, scarred and scared little girl in our lives. The task set before me (love unconditionally) became crystal clear, and I was terrified. For me, fear often results in an emotional shutdown, backing away from a situation because I need to understand it first. And yet, there’s no time for that. There’s no compensating for my usual way of dealing with the unknown. The reason for naming this initial post-adoptive time period “cocooning” became brutally obvious to me. I felt bound up and trapped. I felt like even when I get out of the house for a short while I still could not breathe. I felt like a caterpillar that went into cocooning wanting to be a butterfly, but then once I was all wrapped up my desire was to return to my happy, oblivious, leaf-eating days. But I can’t, and deep down, I’m glad I can’t. A new thing is being created in this crazy little cocoon of ours. To transform from one thing into another is painful. So very painful. The pain of cocooning and transformation into something beautiful means even more because Julianne is our butterfly. “Butterfly children” is a name given to kiddos with EB because of how delicate their skin is. The description is apt; our little one has skin that can tear so easily, just like the wings of a butterfly. She is always being torn and re-made… her skin going through an endless cycle, much in the same way that our family is being torn and re-made during this time period. It’s the most excruciating experience of our lives… and yet… there is grace.
Grace.
At the right moment, when the pain of the transformation seemed like too much, I saw what I needed to see to say “yes” all over again.
“The LORD builds up Jerusalem;
He gathers the outcasts of Israel.
He heals the brokenhearted
And binds up their wounds.
He counts the number of the stars;
He gives names to all of them.
Great is our Lord and abundant in strength;
His understanding is infinite.”
Psalm 147:2-5
God has gathered her, called her beloved; declared that she is NOT an outcast.
HE will heal her broken and scarred heart, HE will bind up the wounds that only He can see.
He knows her like He knows the stars. She is precious and named. She is His.
He is great. He is able to do these things that I alone, that we as a family, cannot do.
He knows what it will take. He knows the journey won’t be easy, or short. But we can trust that He understands it more than we ever will. We can follow Him, and He will show us how He alone can heal.
Skin wounds. Heart wounds. Wound care. EB Adoption. The constant care of her skin reminds me that her heart needs constant care, too. I cannot neglect one or the other at any time. As I see her scars slowly soften under loving touch, I imagine her heart scars are softening as well. Not overnight, not by any means. Her skin will always show the scars of past wounds, but her heart scars can heal more completely because the Healer is doing that job. He’s allowing us to be a part of it, but ultimately, He’s doing the hard work.
The thing I love the most right now about our daughter is that she thinks she is beautiful. She primps and prisses in front of mirrors (or any reflective surface!) and declares she is, “so pretty!” And we agree! She IS beautiful. No matter how many boo-boos she has, or how scarred her skin may become… she is beautiful. She is spunky, she is brave and she is lovely.
She is meant for us, and we are meant for her. She shows us that the wounds on the inside are just as worthy of healing as the wounds on the outside.
Epidermolysis Bullosa is a diagnosis. It’s a lifetime diagnosis at this point. There is no cure. But our little butterfly lives with joy, and that’s worth saying “yes” to. Wouldn’t you agree?
— guest post by Whitney
Sounds like you’ve done a wonderful job integrating Juilianne and EB into your family. My daughter now 10 years old is adopted from Kazakhstan at 15 months. She has DEB which was not diagnosed until 3 months back in the USA.
Wow Michelle! I felt like I was totally unprepared (and yet prepared!) to care for our little one. Cannot imagine not knowing that was what was going on ahead of time.
She IS integrating well, especially if you consider learning how to say “poo-poo” from her older brother “good”. 😉
http://www.eb-awareness.org/patbarbrey
My late Mom had severe RDEB and she lived a good life! There is hope. We in the EB community pray for a cure and appreciate each precious day!
So encouraged the the lives of others living with EB! Thanks for the reply, and we join you in praying for a cure! But yes, in the meanwhile, living life to the fullest! So amazed by the EB community. They are awesome.
Whitney, Your account brought back so many memories – the too big clothes, popping blisters (some which covered our daughter’s entire sole of her foot), ordering special cloth shoes from China . . . Twenty six years ago when our daughter was born, no one knew what she had. There was little or no information out there. DEBRA was our only source of information and we made up the treatment as we went along. In spite of this disease she is a beautiful, accomplished, contributing member of society. It sounds like Julianne is in a good place.
Hi friend. Just got to read this (I liked it on spring break even though I couldn’t see it on my phone – I was just happy to see you here on this site!) and it is just beautiful. Like her. Like you. Well done.
I have EB Simplex and am a dermatology NP. My husband and I are considering adopting a butterfly (EB) child in the next few years. What are some adoption agencies who specialize in special needs children? We are unsure about where to start other than Reese’s Rainbow. Any suggestions?
Hi Andrea,
I know this was 5 years ago but there is a little 1 year old boy on the China special focus list with EB. I was just reading about it and saw your question at the bottom of this comment section. Here is the listing on rainbow kids:
https://www.rainbowkids.com/waitingchildphotolisting/child/46229
Hi Andrea
I don’t know if you’re still considering adopting an EB baby but there is a little boy who was posted to our agency’s website with EB. He’s about 20 months old.