Saturday, May 2, 2015

Our Jouney with Ichthyosis: 12 years later

I started out on this journey just over 12 years ago, a scared, overwhelmed 20 yr old girl. The fork in the road of my life took me down a path that I never envisioned for myself.  I was never supposed to be a single mom to a special needs child with a rare skin disorder.

Ichthyosis... Never heard of it? Neither had I up to January 13, 2003.  But the next day my entire world was turned upside down when my daughter was born with this very rare, very severe skin disorder.

I remember the first few years being filled with countless appointments, blood work, physical therapy, and terms being thrown at me that I had never heard before.  It was a complete flurry of chaos.  And sadly, I look back, and I remember pain.  A lot of pain and a lot of heartache.  This wasn't part of my plan.  This wasn't how I had dreamed of my life to be.  I'm supposed to look back at my life and remember that white picket fence, and rainbows, and Ashlynne chasing butterflies.  But that wasn't how it turned out at all.  I don't remember a lot of the milestones that I should remember with my daughter, because life was so overwhelming for us.

Ichthyosis used to completely run my life.  Get togethers with friends, family vacations, even trips to the store, EVERYTHING was based around whether or not it would be bath or lotion time, or whether or not the weather would allow for Ashlynne to go.  I even used to stay away from certain social gatherings if there were a lot of people I didn't know, just to save us all from the stares.  And trips to Walmart? Forget it! It was miserable with all of the comments and finger pointing.  If you ever want to truly test humanity, step foot into Walmart with a child who is visually different.  It's a real treat, let me tell you.  Whether or not my day was good or bad was based on if Ashlynne was having a good or bad skin day.  It was exhausting, isolating, infuriating, lonely, and just plain unfair... To both of us.

The tipping point for me was on one of those fateful trips to Walmart.  I was standing in the checkout line, Ashlynne sitting in the cart, when out of the corner of my eye I see two women pointing at her.  I had had it for the day.  I spun around on my heels, with a glare that could have cut those women in half, and I see them smiling from ear to ear.  SMILING... Then I looked at Ashlynne, and she was smiling back at them.  One of the women looks at me and said "Your daughter has the most beautiful blue eyes and blonde curly hair!"  "Thanks" was all I could muster.  I seriously almost launched on that lady that just so happened to see the true beauty in my daughter.  If she was able to look past Ashlynne's skin, then maybe there are others like her.

Why should I keep all of this joy to myself?

So I decided to drop my guard a bit.  I started getting more involved with the amazing people at FIRST and met other people associated with Ichthyosis, and my confidence slowly grew.  I knew my daughter was beautiful, if others couldn't see it, that was their problem.  I stopped letting her hide behind me, and started showing her off to the world.  Why should I get to be the only one to enjoy this amazing little person?

Now I find myself at peace with all of it.  The anger and the inner struggle of trying too hard to make her life "normal" has dissipated.   Twelve years ago I wanted so badly for everything to be perfect.  Now, I realize that isn't a reasonable dream for a parent with a typical child.  They're going to have dirt and grass stains to accessorize their outfits, and dirty Doritos fingers.  We just happen to have aquaphor stains on our clothes and a few extra skin flakes hanging out. 

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