Wednesday, May 2, 2018

"Celebrating" Ichthyosis Awareness Month 2018

What's not to celebrate about this beautiful human being?
May is Ichthyosis Awareness Month, so let's celebrate!!! "Celebrating" wouldn't have been a word I would have used to describe Ichthyosis in the early years of my daughter's life.  If someone would have told me Ichthyosis was something to celebrate, I would have scoffed at them, no doubt about it.  But... I grew up, emotionally, and changed my perspective.  And now I choose to celebrate the beautiful things in life.

So what is Ichthyosis?  And what exactly is it that I am celebrating about it?  Well, Ichthyosis is the disease, or "disorder", that my daughter was born with.  It's a skin disorder.  A SEVERE skin disorder.  It's not just dry flaky skin.  It's a lot of scientific stuff that I could get in to, and over the years have even learned to understand.  But if I explained it to the average person that hasn't spent hours upon hours in the dermatologist's office, and sat through countless specialist's appointments, it would sound like a foreign language.  Basically, my daughter's skin sucks.  It doesn't work like it should.  She looks like she has been burned.  It causes so many problems beyond her skin that most people don't realize.  And honestly, right now, I don't feel like going in to all of that.  What I want to go in to is the beautiful side of this disease.  The side that I have only really come to accept in the past few years.  I could spend time focusing on the exhausting side of it.  Like the fact that she started high school this year, so we have a whole new administration, and a whole new set of teachers that we have to educate on her limitations and needs. Or like the fact that spring has barely started, and we're already dealing with overheating, and all that the weather changes bring.  But I'm not going to focus on these things today.  I'm going to focus on what I love about ichthyosis.

Like the fact that my daughter is a survivor.  Things were scary when she was born.  We didn't know how long her life would be, or what quality of life she would have.  But she is thriving.  She is healthy, and happy.  This year, we have lost several people with ichthyosis in our small little community.  Some I knew, some I didn't.  Some were here in America, some were not.  Some were young, some were older.  One was a beautiful, young mother of two, who just didn't wake up one morning.  So the fact that my daughter has survived is something to celebrate.

Celebrating friends, like this one, Jordan,
 who is also new mommy to Jackson.
 Jordan, whois affected with the same kind
 of ichthyosis as Ashlynne  has become one
of my very bestfriends over the years.
 I don't know what I would do without her!!!
New life.  My friend Jordan, who has ichthyosis as well, had her second baby this year.  Handsome little Jackson, came into this world, affected with Ichthyosis, and he is gorgeous!  We will get to meet Jackson this summer, and see his big sister, and the rest of their family.  Jackson is just one of the several babies born with ichthyosis this year, whose families are connected with F.I.R.S.T. and will have the opportunity to connect with the rest of us, and support each other in our journey.

Another thing?  In two short months, we will get to convene with many of the friends we have made over the last few years, including Jordan and her family, my friends Jolie, and Kelly and their kiddos, and many others, that are all affected in one way or another by Ichthyosis, at the bi-annual F.I.R.S.T. conference.  I will get to meet some of these families, who have welcomed in new life, that has introduced them to Ichthyosis, just like Ashlynne introduced me to it 15 years ago.  And this year, we're hitting Nashville.   It is a solid four days of hanging out with people who just get it.  Moms, who go through what I do.  Kids, who go through what Ashlynne does.  Siblings, who go through what my other three kiddos go through watching their sister struggle daily.  Grandparents, and dads, who all struggle to see their loved ones struggle with health issues, on top of normal life issues.    I'm sensing a "Mom's night out" in our future, ladies!  Can't wait to see you all and take on Nashville.

All the other girls wear a dress to Homecoming?
She wasn't having it!  She rocked her romper and
there was no shame in her game!  She is who she is,
with no apologies!
I'm celebrating the fact that public awareness seems to be growing!  Believe it or not, we have actually had people recognize what skin disorder Ashlynne has.  I'm sure a large part of this is due to F.I.R.S.T.  But it is also due the families that have worked tirelessly to spread awareness so that their kids may have an easier life.  Ichthyosis also got a mention on "Grace and Frankie", which made me squeal like a little school girl!  Movin on up, folks!!!

I'm celebrating Ashlynne's goofy side.  She has dealt with people staring at her her entire life, so she just doesn't care.  She has thrown all inhibitions out the window, and has embraced who she is.  And I love it.  She wears what she wants, enjoys what she wants, and acts as goofy as she wants, without worrying about a single thing that someone might think.  Good for her.  If only we were all this secure with who we are, the world might be a bit of a different place.

Ashlynne is surrounded with good friends. 
we are blessed to have these beauties, inside
and out, in our lives!
I'm celebrating some of the other really good kids that are in the world.  The kids that are good to my kiddo and the other kids in the world that may not be just like everyone else.  You know, those kids that don't care if they are blending in, and are willing to stick up for a friend.  I'm celebrating the fact that when Ashlynne is feeling lonely, she always has a couple of really good friends that pull through for her.  And I'm celebrating these kids' parents, who have raised their children to be loving, and compassionate, and to be all around good kids, that will become good adults.

Take advantage of this while you can, readers.  Tomorrow, I may be angry again.  I may be mad that my daughter was up all night again with one of her infamous bloody noses.  Or I may be mad that she can't walk home, or hang out outside with her friends, because the temperature is over 75, and believe it or not, that's too hot for her.  I may be angry that some people just can't look past her red skin, and see the beautiful person she is.  And I may be mad that she has to deal with all of this crap.  I may be asking, "why her?" and wallowing in self pity.  I may be mad that "normal" things, are sometimes just a bit harder for her.  But today, I'm ok.  I'm celebrating. 

Cheers!



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