lavender jade

“The lavender is more rare,” he told me in the crowded marketplace teeming with voices and noises completely different from those I was accustomed to at home.  I glanced down at the little face, the rare butterfly who flitted into my life and knew the circle of lavender is what I needed. One day, I would be able to tell her the story about why I chose the palest purple rather than the tradition green.  She will know why I hold the cold circle to my mouth to feel it gradually warm against my lips.  It’s a reminder to love the rare things in life; a reminder of those days when our family was first being forged into something new and beautiful.  A lavender jade kind of beauty.

lavender jade 3 blog copy

Earlier in the summer, we had a precious vial of Julianne’s blood drawn in order to undergo genetic testing.  Specifically, we wanted to learn more about the type and sub-type of EB she has.  Epidermolysis Bullosa is rare.  Lavender jade rare.  There are several types and a plethora of sub-types within each type.  Because the physical symptoms vary so much between people even within the same type or sub-type, we felt that knowing more information might help us take a glance into her future; we knew it was information she would one day want to know.

After eight weeks of waiting, we got her results back, and though I had secretly hoped for clear-cut “this is what she has” print on our paper copy, it wasn’t quite conclusive.  The type is conclusive, and exactly what I’ve thought she had since Day One.  The sub-type is the mystery.  A lavender jade mystery.

There are cases where what’s on the inside (genotype) doesn’t match what’s on the outside (phenotype).  These cases are unique, and no one really knows why it happens.  There are guesses, assumptions, and suppositions, but no concrete knowledge.  It looks like she’s one of these unique cases; surprisingly, she’s more unique than even I imagined. Lavender jade unique.

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Why do I mention any of this at all?

Because knowing these details about the way her DNA is bound together has changed me.

I realized a few days after perusing through some medical journals that with the slightest twist, her life, our lives… they would have been vastly different.  With the slightest twist, she may not have exhibited physical signs of EB at all, and chances are strong that she would still be living half a world away from us.  With the slightest twist, she may have exhibited more severe physical signs of EB, and, not knowing anything about it at the start of our adoption process, we may have felt we could not care for her the way she would have needed to be cared for.

My stomach clenched tight at these realizations.  I was not okay with it.  Not okay with her not being here for any reason.  Not okay with remaining unaware of the beauty of the butterfly we call our daughter.

She has caused me to grow and stretch in ways I could have never imagined.  She has taught me what strength in the face of sheer terror looks like.  She has demonstrated bravery in situations that would have caused me to crumble had I not had her steady brown eyes to look into.  Having her has taught me that what’s on the outside 110% doesn’t matter even an inch compared to what’s on the inside.  Her outside screams pain and suffering.  Her inside shines with joy forged in the fire.  It’s a lavender jade kind of joy.

lavender jade 2

The lavender circle is heavy around my neck.  Rare things are to be protected, and our daughter is one of them.  The weight of protecting her hums through my brain, through my blood. Protection as a mandate, as a gift to another mama halfway around the world who wore the same weight years ago.

She is a gift.  I know that now more than ever before.  A lavender jade kind of gift.

Rare.  Precious.  Beautiful.

 

 

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One Comment on “lavender jade

  1. Pingback: Earrings in Heaven {World Rare Disease Day 2017} – life into likeness

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