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Ichthyosis Awareness Month

May is IAM. Carly featured the stories of people with this skin disease on her blog this month. Angela’s story was featured this week. Check it out!

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.

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