fruitful {how to deal with the EB questions}

When we’re out with Julianne, she draws people’s attention.  This is inevitable, and we were aware that this would be the case for our family.  We have a beautiful family… but the fact that Julianne looks different from the other children doesn’t escape the notice of others.  In addition to the obvious differences, we knew that Julianne would garner attention because of her medical need, which we have never tried to hide.

“What’s on her arms?”

“Why does she have so many boo-boos?”

“Is she okay??”

“Does she have a rash?”

I have never brushed off the questions because I know that education is a crucial part of spreading awareness about EB.

Julianne’s form of the disease is so mild compared to others.  I mean, it definitely is there.  She has new boo-boos and wounds daily, she has scars that will probably always be there.  But she can function almost completely normally despite her limitations.  She runs even when her feet bleed.  She dances even with her arms bandaged.  She demands we pull her hair back from her forehead into a ponytail and slap a giant bow on it.  At this point, she’s completely oblivious to the fact that she has EB, and I love that.

Other people, though, they ask questions.

I am so happy to answer these questions, and I always gear it to either the adult level or the kid level based on who is asking. But sometimes….

*sigh*

Sometimes I fight for patience.  My heart grows heavy when people make mention of how kids will make fun of her when she is older.  How am I supposed to respond to that?  I try to be graceful, but there are times when people seem dead-set on having their foot just hang out in their mouth, and they don’t even realize it’s there.

As much as I love to educate and explain that there is nothing “wrong” with her, she just has EB, I know I need some back-up.

And so, we made business cards.  Yep.  So when the questions arise, and maybe I don’t have time to explain, or the questions become a little intrusive, I can just say, “here, feel free to learn more about it!”

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I know there will also be times when the questions become a little too personal.  Educating and informing is super cool with us, but answering personal questions can be a bit much, especially in the wrong environment.  If it’s one-on-one over a up of coffee and the questions are from the heart, I’m all in.  If it’s in a more public setting, and the questions become borderline rude, I call in the cavalry…

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I mean, if one is enjoying a delicious lollipop, then the questions and commentary are bound to slow down, right??? 😉

Finally, if all else fails, and I’m still feeling overwhelmed in the moment…

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That’s right.  I need to put a lollipop in my own mouth when I feel the Mama Bear rising up in me in a way that’s not appropriate.  Let’s be honest.  There are times when the ferocious protectiveness will need to be there.  And there are times when I need to let stuff just roll off.  If my daughter isn’t been attacked personally, then it’s probably just me getting defensive over things that bother ME.

Every moment is a teachable moment, especially these first encounters in public.  The more we get out and about, the more comments and questions we are bound to be asked.  I want her and her siblings to know that it’s important to protect, but it’s also important to love.  It’s important to have more of Jesus every day, more of His Spirit so that the fruits of the Spirit show up in us in these moments that test us.  We want to have Love, and Joy, and Peace, and Patience.  We want to have Kindness, Goodness, Faithfulness.  We want to have Gentleness, and Self-Control.  All of these things and more.  We want to show people that our daughter, our sister, is perfectly perfect the way she is because she is created in the image of the God who loves her.

So, bring on the questions!  I. Am. Ready.

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One Comment on “fruitful {how to deal with the EB questions}

  1. Hang in there you are on the right track. LORD please provide Whitney and the family with the strength to educate and provide your wisdom for the EB cause. Buckets of blessings!

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