Wednesday, May 1, 2019

Ichthyosis Awareness month 2019- how I am feeling after 16 years of my child's diagnosis

To the parents with a child with special needs,

I want you to know.  It's ok.  If you don't feel like you can be the face of your child's disease, or if you do feel you can, it's ok.  Either way, you're doing a good job.

Today is May 1, which kicks off Ichthyosis awareness month each year.  This is the time of year where I am supposed to use my voice and educate the world about Ichthyosis, and how it affects my daughter and my family.  This is where I'm supposed to tell you that the skin is the largest organ in the body, and its main functions include acting as a barrier against heat and infection, and protecting the body's organs from everything outside.  And when the skin doesn't function properly, it puts everything at risk.  This is where I'm supposed to tell you that ichthyosis, my daughter's skin disorder, is more than "just a skin disorder" and it has affected everything about the normal life that I pictured for her.  But I don't want to.

Ashlynne is 16, and I'm just in a period in her life, and mine, where sometimes, I just don't feel like explaining everything.  Sometimes, in my head, in want to scream "IT'S NOT MY JOB TO TEACH PEOPLE THINGS!".  I'm at a point in my life, where I just want to see my daughter live as close to a normal life as possible.  And sometimes, I get tired of ichthyosis being in the way of certain things.

I know I normally try to stay pretty positive about things, but this has been a tough year.  When you have a special needs child, from the time they are born, people are constantly telling you to let them know if you need anything, or if there is anything they can do to help, to let the know.  But the truth is, in the beginning, you don't know what you need, or what would help. And now I'm at the point where, when people say those things, I want to reply "can you make my kid wear her back brace?", because she has been diagnosed with scoliosis on top of everything else.  Or better yet, I want to say "can you just make this all go away, can you cure her?", but that's not fair either.  So I say thank you, and we move on.  The truth of the matter is, no one can really do anything to help, other than be there to support her.  Other than the doctors, who are working vigorously trying to find a cure or treatment, no one can really do anything other than be our friends, and listen when we are mad, and angry, and cheer with us when we have little victories.  And we have that.  I am so grateful that we are lucky enough to have that. Without my support system, I don't know where Ashlynne and I would be.

I know this is the part where I am supposed to be encouraging new moms who might be learning about ichthyosis, or any other disorder or disease they had never heard of until their child was diagnosed.  And I will tell you this, you will get through it.  There will be better days ahead.  You will have days where you barely even think about your child's diagnosis, and you will get a glimpse of a "normal" life.  But there will also be other days where you feel like you're drowning and you see your life raft floating further away.  But you will get through it.  You will.  Some days will be easier than others, but your love for your child will get you through even your darkest days.  And that is it.  That is literally the only thing that can sustain you through those hard days.  Nothing else I can say or do will even come close to fixing any of it.  Your love for you child is your life raft.

I have my days where I am really positive and upbeat.  Today just isn't one of them.  Today is me just being real with you.  Tonight, I am going live with Ashlynne on facebook and instagram to answer some questions, and to let you all see her, and her awesome personality.  But right now, this is just me. being raw. telling you we all have our days.  We all have our days where we just feel jaded, and don't have the energy to teach the world about our normal.  Next month, we will be filming a documentary about ichthyosis with a production company, and on that day, I will bring my A game, and I will do as much educating as I can.  But I will tell you this, Ashlynne is the one spreading awareness, not me.  Ashlynne spreads awareness with her joy, and her love for life, and her love for
Ashlynne, and part of her support group on her
prom day.  No one messes with her with this
crew around!

So I will tell you this about ichthyosis:  it affects everything about one's skin functions, therefore affecting everything about the life of a person that lives with it.  It affects physical, emotional, and social aspects of just about everything that a person goes through.  My child has been lucky enough to have some great friends and family that has always made sure she has had as close to a normal life as possible, but it's the strangers that exhaust me.  The physical is scary, the times when we didn't know what was next for her, health wise.  The times that I was watching an infection closely, wondering if it would land us in the hospital, or the times that I would be scared to even take her to the store, because the walk from the car held a huge risk of her overheating, those times were scary.  But the social interactions are what are the most frustrating.  Her being made to feel different by complete strangers, and by people she has known her whole life, has been the hardest part of her disease.

So that brings up why we are here today.  Raising awareness, so that socially, things are easier for our kids.  Raising awareness so that people don't get kicked off of planes for having ichthyosis, or don't get stared at, open mouthed, at Walmart when they are just trying to look at makeup.  I get asked constantly how I would prefer people approach us if they have questions, or if they want to know more.  My answer is this:  just be a decent human being.  Don't stare, don't walk up and ask my what is wrong with my kid, don't snap pics of her when you see her in a store, don't lecture her about her sunburn.  Don't leave her out of things just because you don't know how to approach her.  Don't treat her any different.  Treat her like you would treat anyone else.  Be a decent human being.  Smile at her.  Ask her her name.  Get to know her.  If you do that, you will get to know about ichthyosis.

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