If I could watch the world from the sidelines, I would.

I don’t like being the center of attention, at least not for long periods of time.  It’s taken a decent number of years to be able to say “thank you” when complimented… hidden, unseen, invisible is what I have preferred to be.

And then suddenly, in the time it took to hastily scribble my name on a piece of paper, I was visible, because Julianne is visible.

Having a daughter born in China with a visible medical need has wrenched me from my comfortable perch looking in, and has plopped me into a fish bowl.  People SEE us.  They look at us.  They are curious about us.   She is an extension of me, and when she is seen, I am too.  Even when I’m not physically with her, I sense people seeing her, questioning her appearance, wondering “what happened”.  It can be (has been) a panic inducing thought process.

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Julianne has Epidermolysis bullosa.  The last week of October heralds in the week in which we work even more feverishly toward public awareness.

“I DON’T WANT TO BE SEEN!” is the cry of my heart, and yet because she has no choice in the matter of her own visibility, I stand with her.

*Deep breath*

I remember that we are brave, we are strong, and we can do hard things.

That short phrase is what I remind her of  when she struggles with having EB.  There are days where tears fall like a flood and the cry of her heart is to not have this struggle any more.  I can’t blame her; the pain I feel watching her is nothing compared to the pain she feels.  And so I look right into her dark eyes and make her repeat it after me…

“I am brave.  I am strong.  I can do hard things.”

It’s easy to assume that because she has a condition that makes her fragile that she would want to be treated as fragile, and that’s a tricky thing to deal with because it’s absolutely not true.  Yes, there are days when she needs extra hugs and kisses; days when sitting on the couch and reading her favorite books while she runs her fingers up and down my scar-free arm are necessary.

She also revels in doing the impossible.  She jumps on the trampoline while I hold my breath, knowing that perhaps we will have to take care of more wounds afterwards, but that it’s worth it.

She screams with joy as she pedals her bicycle around the cul-de-sac while I hold my breath, knowing that one slight bump will send her falling off and the results will be far more than a skinned knee, but that it will have been worth it.

She swings higher than she should on the swings all the while yelling at me to “WATCH THIS!!!”.  And yes, I hold my breath and hope that her fantastic dismount is graceful knowing that even if she falls, it will have been worth it.

She doesn’t hold back.  And so we don’t hold her back.

There are times when we speak words of caution to her, times when we make an executive decision to keep her safe in a situation we know will hurt her.  For the most part, though, she soaks in the life experiences with a smile the size of China on her face.

She is visible.  So very visible.  The joy she exudes would be enough to make her the focus of attention, but the attention lingers like a butterfly on a flower because of the appearance of her skin.

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There are times when interactions with others is so positive and leaves my spirits buoyed.  I know that the person we talk to really gets it:  they see her on the outside, but they also see her on the inside.

There are times when my heart races because though I know the responses aren’t meant to make her an object of pity, that is exactly what they do.  Though I know the words that are often spoken are not meant to make my chest tighten in defense of my daughter, they do. Feeling sorry for her is not an option for us, and so it’s cannot be an option for you.  She may have to deal with much more difficult things in life compared to many, but we want you to know that

she is fragile on the outside, but on the inside?  She is stronger than most.

The message I would send about how to interact with her is this:

It’s okay to notice her differences.

Please don’t ignore your children if they are asking questions about her.  Little ones often have the most open-hearted inquiries, and it’s honestly a pleasure to talk to them on their level about what’s going on with her.  We see the hushed whispers, the “look” given by mothers desperately seeking to stop their child from asking what’s wrong with her. It’s a far better thing to let her talk about it out loud versus knowing people are talking about her.

Please don’t dwell on the differences.

I know it’s a fine line to walk.  There are, after all, so many factors that make her not the same as a typical child her age.  When it comes to how EB affects her, we opt to treat her much the same as a typical child her age.  Yes, she is bandaged up and protected, but that’s it.  Physically, she can do almost anything any other child can do.

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Why do I even mention this?  Because, for us, it’s a slippery slope.  One person treating her like she is less than capable is just one person.  When it happens repeatedly, she begins to think she really can’t do certain things.  Having spent her youngest years in an institution, she is quick to read people and see what they want from her.  She can change her personality to suit the person she is interacting with; she knows if what they want is a victim persona, or a warrior persona… so tell her how strong she is!  Tell her how brave she is.  Tell her she can do hard things.

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She is so very visible, and though it goes against everything in my introverted personality, I choose to be visible with her.  To let her walk this alone is not even a question.  Not even on the most difficult of days when I wonder how on earth this Big Picture we are living will ever come together properly does my heart of hearts want her to be alone in this.

I’d be lying, though, if I told you I relish these days; they are some of the hardest I’ve lived.  For some reason, the longer we are home, the harder it is to come to grips with the fact that it will always be a battle to communicate in which ways she is the same, and which ways she is not the same.  Trust me.  My brain is just as overloaded as yours is when trying to sort all of this out.  Maybe even more so.

For those who have lived this… I need not say more.

For those who haven’t… you are the reason I speak.

I know so many of you want to know the right thing to say; you want to teach your children the way to love people with visible differences in a way that shows them respect and honor.  My daughter needs the people in her world to tell her that visible is good.  She needs them to gently hold her hand and walk with her when she feels compressed by the whispers of voices not brave enough to speak to her face to face.  

Be those people.

I want her to be proud of being so visible, and even though I am dragged kicking and screaming along for the ride some days, I am thankful she has made me more visible, too.

***

EB Awareness Week falls on the last week of October every year.  To learn more about EB, visit www.debra.org

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One Comment on “visible

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

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