Special Skin: When My Kids Realized

We were driving along on a back country road, on our way to a friend’s house, when it finally came.

Connor piped up from a quiet back seat as we listened to the country music on the radio.

“Remember when that person didn’t know that Brenna has special skin?”

I stalled. I didn’t expect it. And so I took my time trying to decide how to respond.

“Which person?” I asked him.

“I don’t know,” was the reply.

“Yes,” I said carefully. “Sometimes we just need to tell people when they don’t know, don’t we?”


And then, from the other side of the car…

“Special skin!”

Brenna exclaimed the words, and with her left hand, she pointed to her right arm and rubbed her finger along the crook of her elbow. “Special skin,” she repeated.

Yes, special skin.

I feel like I’ve been found out.

It was inevitable, but still. It hurts. It hurts to know that so many people have asked about Brenna’s skin or commented on Brenna’s skin that both kids have heard us explain her “special skin” so much, they now know this phrase without anyone bringing it up.

Truth be told, I want to shield them from this forever. Because right now, it is simply “special skin.”

But it won’t stay like that.

It will eventually morph into noticing those kids staring or hearing “what’s wrong with your sister?” It will eventually become rude comments or maybe even games in which the other school kids try not to touch her skin.

And the responsibility of teaching both Connor and Brenna how to react or respond to these situations feels so daunting sometimes.

As their mother, sometimes I feel so completely stuck between the protective mama bear that wants to jump all over everyone who gives her a funny look, and wanting to model the best way to respond to public reaction. Exemplify confidence, self-assurance, and even kindness. (Sometimes even to the rude people…darn that whole ‘setting an example’ thing.) And it can be hard to figure out what to teach as the best way to respond in each new and unique situation, with each new and unique question, when I’m still trying to figure it out myself.

So we take it one step at a time, trying to prepare without letting it invade our very full and happy lives.And I hope that we can help people see that this “special skin” is only one part of our lives, and if they don’t let it obstruct their full view,  there is a lot more to our story.

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15 thoughts on “Special Skin: When My Kids Realized

  • September 22, 2014 at 4:41 pm

    So well written, and I bet in time Brenna will come up with a perfect way to deal with any situation she is presented with.

  • September 22, 2014 at 4:41 pm

    Special girl inside that special skin…and an extra special big brother to hold her hand along the way. They will do great (even if you lose your temper a bit with a few people along the way, which is to be expected).

    • September 23, 2014 at 3:19 pm

      Thank you!! He is a very extraordinary kid.

  • September 22, 2014 at 4:56 pm

    She is beautiful and precious

  • September 22, 2014 at 6:10 pm

    I don’t know your family personally, but I follow your blog. I remember reading a post not too long ago, when my daughter sat down next to me and asked about a picture of Brenna. Who was she? Why did her skin look so different?

    I took that moment and used it to explain about differences in others. We do our best to teach our kids that differences should be celebrated, not judged. And your blog helped me explain about Brenna’s skin to the best of my ability. And after a moment, my daughter simply said “oh, ok. she has a great smile!”

    So thank you for taking that time to explain about Brenna’s special skin & providing parents like myself with teachable moments. Not just for my kids but for me as well.

    • September 23, 2014 at 12:05 am

      I second this comment. My daughter is special, but in Non-visible ways. It is always important to teach our children to look beyond the differences in others and see the beauty within.

    • September 23, 2014 at 3:20 pm

      Thank you so much for talking to your child about differences!!

  • September 22, 2014 at 6:27 pm

    I love ur family and the blog. I am always hoping u have a new one on here when I get a Facebook. Keep up the good work.

  • September 22, 2014 at 6:36 pm

    This is so true, my little girl has ichthyosis and this is how I feel. Worth all the hard work though as they are both beautiful and makes them special xx

  • September 22, 2014 at 10:20 pm

    Your blogs are teaching moments. We have a grandson with ichthyosis and so identify with your words. Your little girl is beautiful!! Thank you for sharing.

  • September 23, 2014 at 1:53 am

    Special skin for a beautiful soul—–and a beautiful family to embrace this special soul.

  • September 23, 2014 at 2:36 am

    Oh, I hear ya!!!! It’s not even October yet, and today someone came up to me to ask why my daughter’s face was painted early for Halloween. I find in front of others, especially Keziah, I do my best to model my best response. But then I let loose at home or with a friend, not with Keziah near me. So hard to balance it, but when I look at Kez, I know why it is so important – for her sake.

    • September 23, 2014 at 3:20 pm

      That’s absolutely ridiculous! I try my best to be kind even in the face of rude, but it is so hard sometimes.

  • September 23, 2014 at 3:21 pm

    Sometimes a simple explanation is all it takes!

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