there is nothing wrong with her

You saw my daughter today when we were out at Costco.  I was just by the meat counter when I noticed you, noticing her.

A few steps further, I picked up a container of blueberries, my daughter’s favorite, and noticed you, noticing her.

A few steps further and you were right beside us, staring down at the little legs sticking out from underneath the lilac tutu dress, and she noticed you, noticing her.

I admit my tone wasn’t kind when I told you that there is nothing wrong with her as I quickly walked away.  I didn’t even glance back as you called out, “what is wrong with her?” on top of my preemptive response.

I choked back tears and moved on to the paper goods aisle and pretended like the brief encounter didn’t bother me.

But it did.

tutu twirl 1 for blog

I wish I could have calmly told you that she has Epidermolysis bullosa; that something IS wrong with her, but not in a way that affects you at all.

I wish I could have let you know about ways to learn more, ways to help; these things actually COULD affect you as there is no way to see and not want to help.

I know it looks bad to you, I know it looks like maybe I don’t take very good care of my child.  Your thoughts might be compounded by the fact that it’s obvious she didn’t join the family in the same way the other three children, her siblings, did.

She has EB, and we can’t hide it.  She actually looks REALLY good right now; a few weeks ago her legs were completely wrapped in specialized bandages because regular bandaid type products tear her skin when they are removed.   The slightest touch sent the top layers of her skin sliding off of the base layer, and there was nothing I could do to stop it.  Right now, her skin is holding together in a way that I have never seen before, and it makes my heart skip a beat to think this season of her life might be less painful than the previous season.

tutu twirl 2 for blog

While you are curious, I am frustrated.  I don’t understand what makes some time periods better than others for her.  I wish I knew the magic formula to keep her skin looking as good as it does now, but then I’m reminded that even when she looks good in my eyes, in the eyes of the world there is something wrong.

Did you notice her dark almond eyes staring at you as you stared at her?  She knows what you were doing.  She has seen it before.  She knows that to wear the dress she loves means to expose her legs and she doesn’t care, because we don’t care.  She loves twirling and spinning in that dress, it makes her feel beautiful… something your words didn’t do.   I know one day she may reach an age where the discomfort of strangers making comments like yours may be too much for her, and she will choose to hide her body from the world.  But until then, I will let her wear the things she loves and be her shield from the arrows of unkindness that will be shot at her.

She is more than just lovely on the outside, you know.  Her light shines so brightly from the inside out, a miraculous light that has not been dimmed by circumstances in her short life that are more than any person should have to deal with.

tutu twirl 3 for blog

Dear fellow human… next time you are out and see a child who has something going on that is clearly not “normal”, try to not be so normal.

Normal means to stare, point, whisper.

Instead, be abnormal.

Wave and point out that the purple clip in her hair matches the purple dress she is wearing.

Tell her she has a smile that lights up a room.

Tell her her mommy is so blessed to have such a beautiful daughter, because I am.

She is a gift, this little girl is… a perfect gift… and there is nothing wrong with her.


 

For more information about Epidermolysis bullosa and ways you can help families with EB, check out www.debra.org.

 

 

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4 Comments on “there is nothing wrong with her

  1. So tough on both of you, Mama and child.Anything that is “different”, especially when it’s a physical difference make some people act crazy… or “normal”, as you said. I became a wheelchair user/lower leg amputee a few years ago. After 50 years of walking normally, I became “different”. It’s been eye-opening to see and feel how folks treat me.

    Children mostly just want to know and always ask “where is your leg?”. It is adults who react in a negative way. I know that it’s curiosity. But, sometimes it’s inappropriate. Teen girl who took photos of me with her cell phone in the local grocery store. I rolled over to her (and, her Daddy) and asked her if she could email the photos to me if I gave her my email address. Both of them were embarrassed. In all fairness, her Dad was not aware. She turned beet red and was told to “delete them” and never let it happen again, (by Dad, not me). I saw him giving her a good “talking to” as they left the store. Hopefully she learned something. Educate, educate, educate.

    Then there is my older sister who won’t allow me around her grandchildren, as they “might be afraid”. Oh my word. It is her thing. She is ashamed of me. I have had to let that go and just know that it is ignorance and being hateful.

    I have followed your journey since before your Sweetie came home and am always, always touched by your posts. You are so full of knowledge and when you don’t know something, it’s evident that you search and learn how and what to do the best to provide the love and care that all of your children need. I don’t know if I’ve commented before, but I always read and always pray.

    One thing I did do is to have some business cards printed and give them to people who are really “curious-nosy”.
    I have gone to some schools to share my own story and have also gone to a local child care/pre-school just to read and interact with the children. Thankfully, there are Teachers who want to teach Littles about people who are different. If only they could teach adults about acceptance and how to interact with anyone with a physical or mental difference.

    So, keep on letting your Girl spin in her pretty tutu’s! And, if I ever meet you in a store or anywhere, I will tell her she is lovely. And, that she chose just the right bow for her hair! Good matching, Sweet Girl!

    Much Love in Jesus. – Jo

  2. I hate that you have been on the receiving end of the same types of behavior. There is a huge difference between children and adults for the most part in how they perceive anything different. Kids are curious. Adults tend toward judgement. It’s sad.
    Super cool to hear that you get to be a part of teaching a new generation about physical differences and how they aren’t scary or bad in the schools! I actually sent a letter to her preschool class at the beginning of the year to help answer questions before they are asked, and that helped a lot this year; Julianne has had a wonderful preschool experience!
    I feel honored that you shared this bit of your story with me. Thank you for the words of encouragement.

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

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