29 May 2015

Ichthyosis Awareness Month - Cora and Ashlynne's story: " At the age of 12, she is not ashamed or embarrassed of her Ichthyosis, but she is truly comfortable in her own skin."

I've been following Cora's blog for a while - I admire how she writes about coming to terms with her daughter Ashlynne's Confetti Ichthyosis. Life has been hard for them but they've chosen to celebrate, to work as a team - to dance in the rain, as Cora writes. The connections Cora made has ensured Ashlynne gained confidence and is comfortable in her skin - such an important trait for a 12 year old girl. And she has a mature sense of perspective, reminding her peers of what's important in life. I love their story.

You can send Cora and Ashlynne some good wishes on her Facebook page

Meet Cora and Ashlynne. 

"Born on January 14, 2003, Ashlynne made an impression on the world from the moment she came into it. Delivered in a small town hospital, the doctors immediately knew something was wrong with her skin, and it was something that was bigger than anything they could care for. So she took her first helicopter ride at just a few hours old, all by herself, leaving me, her mommy, all alone back in Abilene, KS with one word ringing through my head, a word that seemed totally foreign to me... Ichthyosis.

You never know how strong you can be, until being strong is your only option. Over the years there have been many times where I felt like Ichthyosis had the power to break me. But then I realized my love for my daughter was far more powerful. For the past 12 years I have had a love/hate relationship with Ichthyosis. Hating this skin disorder that my daughter is affected with, yet loving her more than I ever thought possible. Hating the baths, and the lotioning, and the scrubbing, during which she screamed the whole time, but loving the snuggles afterward, when she only wanted me. Hating all of the doctor's appointments, and physical therapy appointments, yet loving the progress I was seeing her make. I loved proving the people wrong who said that she would never walk, or never have a normal life, yet hated the fact that I even had to prove them wrong. And I always hated how much people praised me for what I did with her. I'm no martyr. I'm just a regular mom, doing what any mom would do for their child. I didn't chose it. I did what I had to do. Because I had to be strong for her. Then one day, I just let it all go. I decided I wasn't going to let the anger, and Ichthyosis run my life anymore.

See, life isn't about waiting for the storm to pass, but it is about learning to dance in the rain. And I decided to dance, with Ashlynne as my partner. We got hooked up with F.I.R.S.T., made connections with other families affected with this disorder, and it changed my perspective, which changed our life. Right before my eyes, I saw Ashlynne transform from this shy, timid little girl who hid behind me any time we were in public, to this funny, outgoing young lady with an amazing personality, and a contagious smile that just drew people to her. Now when people stare at her, rather than cower behind me, she makes a funny face at them, and makes them smile.

At the age of 12, she is not ashamed or embarrassed of her Ichthyosis, but she is truly comfortable in her own skin. When you ask her about her life, she will tell you that she hates having Ichthyosis, but she loves the people she has met because of it. It has also given her a very wise perspective. She said she just wants people to understand that there is always someone out there who has bigger problems. When she hears other 12 year olds talking about their crushes, or fighting with their friends, she just wants to remind them that there are other kids out there fighting for their lives. And she said she reminds herself of that quite often when she is having a "bad skin day".

I am so proud and honored to be Ashlynne's mom. Yes, she has Ichthyosis. But Ichthyosis isn't who she is. She is beautiful, and amazing, and funny, and smart... I could go on and on. But mostly, she's just Ashlynne, one in a million, and one you will never forget!"

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.

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  1. You guys are an inspiration to so many.


  2. I love their story! I was sitting here reading it while getting some post bath cuddles with my girl! 😍 Those are the best!

  3. Thank you for sharing this beautiful story about your beautiful daughter. Loved the phrase about not waiting for storm to pass but dance in the rain.


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