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.


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.


1 Comments on “in memory”

  1. Whitney,
    Thank you for sharing this precious, difficult post. My heart is with the parents who loved Georgia, and with all of you. I’m sorta smiling through tears right now…..
    Love and prayers ,

    Sent from my iPad

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