it started with a question…

“What kind of pajamas work best for EB kiddos? Suggestions??”

That’s what I posted one day not long after coming home with Julianne in a private EB (Epidermolysis Bullosa) group on Facebook.  This group has been so helpful to us in our new journey, and I figured if anyone had a good suggestion, it would be these friends.

Pajamas.  I never thought about them seriously before!  But when you’ve got to pull sleeves and pants up and over bandages areas, you suddenly realize pajamas are indeed worth thinking about.  I went up a size to accommodate for the space, but the arms were still too tight, and then the bottoms too big.

It started with a question… and a few days later I got a message.  A lady in the group had a friend named Sandy whose daughter passed away from EB several years ago.   Sandy used to make her daughter’s pajamas herself so that they were the ultimate in EB comfort.  Not long before I posted my question, Sandy had mentioned to the lady in the group that she would love to pass these pajamas down to someone… that she could now.  She was ready to let go a little more.  Her daughter had been an adopted butterfly as well, and the fact that Julianne is adopted made the passing down even sweeter; more meaningful.

And so we were connected.  We’ve exchanged stories, and she’s given me more helpful information than I could imagine… how to best remove blood stains (a daily event!), creative ways to keep these kiddos that overheat easily cooler, and also, encouragement.  Lots of encouragement.  Y’all.  I have never considered myself much of a “words of encouragement” person.  But during this season of life, they have been water to my thirst soul!

“I am sure that you are pretty overwhelmed right now.  It’s a lot – but Jesus WILL carry you through it.  Talk to Him every step of the way.  We were constantly amazed to see the way He cared for [our daughter] and we know Him better because of it.  I am sure in time you will be able to say the same thing about Julianne.  I will share one thing about that with you.  We always told [our daughter] that Jesus would either heal her or hold her.  He chose to hold her.  When she was 10, I asked her if it was true – could she think of a time when He didn’t hold her?  She thought for awhile and told me that she couldn’t think of one time.  As you serve Him, He will do the same for Julianne – even in the most agonizing and pain-filled tears, He was there!

Tears fill my eyes as I read this again.  This contact may have started with a question about pajamas, but it has become something that shows me hope.  A friend I may never meet in person who I know I can talk to, ask questions of, and will be encouraged in the Lord by.

A little while later, we received two boxes filled with items.  Several sets of handmade pajamas, extra wound care supplies, some pieces of satin that are meant to go around the arm under a blood pressure cuff or under the rubber band during a blood draw. So many little items that were a part of their daily life not that long ago, and now are a part of ours.

I am amazed at how giving and loving the EB community is.  These are families that are struggling with a disease that doesn’t just pop into their lives every now and then.  It’s there.  All. The. Time. And yet, there is such joy.  There is determination to not let it beat them.  There is hope for a cure. There is genuine care for others regardless of how much pain they themselves are in.

These people may be labeled “butterflies”, but they are butterflies forged from steel.

This connection, this new friendship, I think it will last.  Sandy and I may never meet face to face, but I count her as one of many that the Lord brings into my life for a purpose, and I hope that I am filling the same role for her in some way.  Her daughter loved Jesus, and is pain-free and whole with Him now, but even while she was trapped by a fragile body on earth, she was beautiful.  Truly beautiful, inside and out.

Want to know more about EB?  Read about this family’s story on No Hands But Ours.


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