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Comfortable in Uncomfortable Skin

I want my kids to be comfortable in their skin. You know, comfortable with who they are AND comfortable BEing who they are.
Last week I shared with you my daughter’s camp experience my experience of my daughter’s camp experience. Being around other kids who share the same life struggles she does taught her a lesson I never will be able to. It’s a lesson I can’t really even put into words. The lesson of living life with someone who struggles with the same thing you do – seeing them for who they are and loving them, then turning that love on yourself and loving yourself with the same things you see in them. Whew! Even that explanation doesn’t begin to explain it. I told you I would follow that blog post with an explanation of her skin condition. So here it is –

My daughter has a condition called ichthyosis vulgaris. There are lots and lots of different disorders in the ichthyosis family. You can read about it here. FIRST (the logo above is theirs) is the only national nonprofit foundation in the United States dedicated to helping those affected by ichthyosis.
My daughter has a very, very mild form. In fact, I’ve only seen it fully show itself about five times and we were able to restore her skin that same day. We are very, very fortunate. As long as we follow the skin routine, she’s fine.

Not really.

She struggles that she has another something different (read this post to find out what that means). Her skin is not soft and smooth. It is painful. The lotion sometimes burns. The other lotion (the cheaper, easy to find lotion) doesn’t smell pleasant. Jeans are uncomfortable. I could go on and on with what she doesn’t like.

Even though her condition is manageable, she struggles with it.

She even asks God “WHY?”

(She has never done that with her birthmark.)

Ever since camp, she happily puts on her lotion without complaint. Thank you, Camp Dermadillo!!!

As her mom, I am so thankful. So thankful. So thankful!!!! That it is not a serious condition. My heart goes out to all of the friends I have met along the way who struggle with their ichthyosis conditions. She doesn’t see it that way yet – the whole gratitude thing. As long as I keep modeling it, she will get there. Right now, she thinks it’s a pretty big deal in her life. I feel that and I honor it. It is a big deal to her and it’s up to me to keep her comfortable in her uncomfortableness. Or at least do my best.

One thing that is the same for all of us, no matter what our something different or our level of disorder, we all want to know there is someone else. With the internet as wide reaching as it is today, there are groups out there for so many different issues. If YOU have a something different, find a group that gives you information and support you through your journey.

Building Bridges with others is recognizing we ALL have something different and finding how to support each other in our differences.

In another one of my parenting mistakes, I learned a powerful lesson. My daughter HATED to wear jeans. I made her anyway. She wanted to wear PJ pants to school and I just wouldn’t allow it and would force (by literally putting them on her myself) her to wear jeans. Read between the lines here and figure out that it must have been laundry day or the middle of winter when skirts weren’t appropriate and jeans were the only option besides PJ bottoms. So, the jeans went on. Then I started researching her skin disorder. Someone along the way mentioned jeans hurting. Someone else thought jeans eased their skin issues. Either way, I realized, if my daughter isn’t comfortable in jeans, don’t make her wear them. It’s that easy. I can help her level of comfort. If I’m ok with it, she’ll be ok with it. If I force her to fit a certain mold, the more uncomfortable she will be. So now, if you see her walking around town in PJ’s, you’ll know why.

Building Bridges is about being comfortable in your skin even if it’s uncomfortable and letting others be comfortable in their uncomfortable skin too.

Camp and confession

Last week I told you about my daughter’s birthmark puzzle, her something different. This is my week for confession and to tell you about a camp that changed her thinking and in turn will impact her life. Ok, and my thinking changed too.

She sits in my lap and we look at pictures from camp. There are so many things I want to say. So many questions I want to ask. Who are these kids? Why are they at camp? What qualified them to be there? When I look at the faces, I see such happiness. But I keep looking. Trying to see what puzzle pieces don’t fit in them. I want to point and ask questions. Why doesn’t she have hair? What’s on her arm? She looks fine, so what’s wrong with her? In that moment I become like every person that has ever asked the dreaded question.

The “What’s on your face?” question.

That is when I learned a big lesson. This was not a camp for kids to discuss skin issues, have lessons on skin care, or therapy for living with something different. It was a camp that invited kids who have skin disorders to find a safe place to have fun with others who had something in common with them. Every time I asked what was wrong with one of her new friends, I was reminding her that there was something different with her too.

She didn’t see the girl with spotted arms as a girl with spots on her arms, but her friend she whispered secrets to after lights out.

She didn’t ask her friends why they were at camp. She just played with them. Without questions. Without seeing them as someone with a disorder – a something different.

If I look at others with skin issues as having something different about them, I’m doing the same with her. That hit me – hard. So I stopped asking. I looked at each one as someone who made my daughter smile. Her new friends. I saw her new friends with different puzzle pieces that fit perfectly together.

I have to confess something else: I didn’t just ask her about the kids in the pictures, when I dropped her off at camp, I wanted to stare at the other kids. I wanted to know why each one was there. I was curious. But there was something more… I wanted to see something different in them. I wanted to see people with more struggles than we have. I didn’t – until we were leaving. A group of kids were just arriving. Covered from head to toe and wearing shields over their faces, they definitely had something different. You know what, they still smiled. Huge smiles. I left thankful that our struggles are so small, with a sprinkling of guilt for the selfishness of my thoughts. After we picked my daughter up from camp, we did talk about that group of kids. It was the only time my daughter gave us information about the kid’s skin issues. She explained it this way “Mom, you have food allergies. They have an allergy to the sun. It’s kinda the same.” Schooled by my daughter! Yes, we are all the same.

So… she went to a camp for kids with skin disorders and didn’t have lesson on skin care? What was the purpose??? The purpose went far deeper than lessons on skin care. Community and Normalcy. It was for kids who normally have struggles to just have fun – to just be kids with others who can relate.

The skin care lessons came from it being ok and normal to have a skin care routine. I’m sure the counselors slipped in comments about skin care. How do I know? My daughter (post-camp) doesn’t go outside without a sun hat and puts on sun screen like a pro. She also doesn’t fuss about her skin care routine. Just so you know, this is a complete turn-around!
At this point you are probably wondering what my daughter’s skin condition is. That answer will come next week. I’ve not shared it publicly before because I didn’t want people who know her to think of her differently. If people are going to think differently of her, they already do. This is my chance to bring awareness of what some people face. Oh, and she gave me permission.  I will also tell you guys what she said about something in my last post. I made an error. (It also shows me her post-camp thinking and how she has changed!)

This is my chance to make a difference by showing how living with a “something different” doesn’t mean you have to live differently.

Build bridges in relationship with others mean not allowing your something different to set you apart as someone different. Always be who you are – unique and special. Let your identity define you without letting who you are be defined by your something different.

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