The beauty of letting go

Healing is messy. But healing is so beautiful.  I think I am finally finding the person I was meant to be.  I have a lot of people to thank for that, but honestly, I owe the biggest thanks to those who have hurt me the most.  

This morning, my daughter asked me what I felt like to have your heart broken.  I couldn't find the words to describe it to her.  All I could do was think of the darkness it pulled me into.  The absolute despair I felt when I looked back at the love lost in my life.  

Never, did I ever, think I would be writing this.  Losing you was the one thing I never thought I would have to face, and when I did, it was the one thing I thought I would never survive.  And for a minute, I barely did.  I was a shell of me.  I lost my friend, I lost my love, I lost a sense of purpose.  We were so intertwined.  We shared friends, we shared hobbies, our families were intertwined.  Who was I without you?  You were supposed to be safe.  You were never supposed to hurt me.  How was it that losing you hurt more than anything I had ever experienced?  How could you just walk away, without looking back.  What about all of this love you left me?  But one day, it clicked.  All it took was for you to continually show me who you really were, that side of you you kept hidden.  I just had to accept that you were that person, and once I did, it was so freeing.  I can't count the hours I spent staring at my phone, praying it would ring with your name scrolling across.  Or the times my heart sank when it wasn't your name.  Then, I took control.  I decided that to keep from breaking my own heart, I had to eliminate the risk.  You knew I was drowning, and you were perfectly content watching me sink.  I realized, that is not the person I want to love.  At the time, I thought it was going to kill me.  But now I realize, staying with you would have killed the person I was meant to discover.  Thank you.  Thank you for showing me what love is NOT.  You don’t destroy someone you love you destroy things, possessions, but not someone you love. But guess what, buddy. You weren’t able to destroy me. Because like a phoenix, I rose from the ashes.  Thank you for clearing the way for who was really meant to be in my life.  Thank you for making room for the man that is capable of loving me. For the man that can handle all the love I have to give. 

I realize I can be a bit much.  My laugh can be a bit loud.  My sense of humor can be a bit dark.  My face can be a bit intimidating.  My personality can be a bit large.  I'm not for everyone.  None of us are.  But I have realized that the people that can't accept that are gradually weeding themselves out of my life.  I, lately, have found myself surrounded by the people who unapologetically love me.  

For the first time in my adult life, I can finally say I am living for me.  I am making my own decisions, rather than just keeping my mouth shut to keep the peace, or choosing what I think someone else would want, just to keep them happy.  Now I live for me, and have attracted people around me that fully accept me, and not people who are hoping I will morph into what they want me to be.  I am finally choosing people.  I'm choosing friendships, relationships.  I am no longer willing to sit back and let life happen to me.  I am in charge of my own life.  Do I have it all figured out just yet?  No.  Will I ever?  I don't know.  But I will certainly try, rather than leaving my fate in someone else's hands.  And as far as all of that love you left me?  Well, here's the thing, you left it with me.  And now, I get to chose who I share that love with.  That love is still there, it is just no longer for you.  You lost.  I didn't.  I gained.  For when you failed to see my worth, it forced me to search for it.  It forced me to recognize what I brought to the table, and it made me realize, I was done settling.   No longer will I plaster on the fake smile that I had mastered for you.  No longer will I gut out excruciating situations, so as not to rock the boat.  That girl is dead. 

So to those of you who have hurt me.  Thank you.  For you have unleashed the me I was always meant to be.  You have helped me discover the person inside of me that I am learning to love.  You have helped me realize what I certainly don't want in my partner, and that is as important as realizing what I do want.  You hurting me, and leaving, has paved the way for me to be the type of woman I was meant to be for the man who was meant to love me for me. 

For those of you who have stayed in my life, or maybe are just entering it:  Welcome.  I am choosing my people, my tribe.  If you are in my life, it's becauseI want you here.  From now on, no one else gets to chose for me if they belong in my life.  I get to chose that.  

Quarantine life in a nutshell

These shirts are ordered, and will hopefully be
here by our reopen day, set for Monday, May 4!

I laugh at the t-shirts, and memes I have seen created since the "social distancing" has become our new normal.  I nod my head in agreement with the jokes that say that some of us have been preparing for social distancing our entire lives.  But the truth is, I miss my life.  I miss my routine.  I miss the smiling faces of my clients.  I miss greeting the mail man and paper guy each day at work.  I miss gently bullying my coworkers each day.  I miss having a reason to get out of bed, and to get myself dressed and dolled up for the day.  And I miss the certainty that each day seemed to hold prior to March 24, when the stay at home order was issued.

For a virus that a majority of us will never contract, COVID-19 has affected all of us more than we ever thought possible.  

Over night, I went from a full-time working, salon owning, boutique owning mom, to a stay at home, homeschooling mom.  Not a role I ever saw myself in.  And let me say, hats off to you ladies that do this every day.  Your job is a challenge, and I respect the hell out of you!  That being said, my kids have been awesome.  They have done their school work, then jumped in to helping me with whatever project I have going for the day.  And how awesome is it, that all three of them have randomly asked how I am doing, and if I am ok, because they know I miss my salon family and life?!?!  I seriously have the best kids!

Miss B turned 9 during quarantine.  We spent
the day tie dying, and opening gifts.  Her favorite
gift?... Her WWE toys she got.  This girl loves
wrestling and the Bella Twins.

I've done all the things that Quarantine '20 has required.  I have binge watched all of Tiger King , and fully believe that Carol Baskin killed her husband, got caught up on all of my true crime TV shows, done several DIY projects, and have done some baking.  We even had a 9th birthday party for my red headed princess.  She took it like a champ with only being able to have siblings and the neighbor friend over.  She made the best of it and I was so very proud of her for that.  Trying to find ways to keep myself occupied has never been an issue for me.  In the past, I spent my days wishing I could find a few more hours in each day so I could accomplish what I felt I needed to for that day.  After getting home from working all day, and doing supper and a few chores, there was almost always certainly some sort of project I was in the middle of o prepping for.  I was never good at "oh, it can wait till tomorrow".  I was a go getter, and felt the need to finish a project that I started, and would work myself ragged until it was done.  Now, the last few days, more often than not, I find myself just kind of walking around looking for something to do.  I've cleaned out the storage rooms.  I've rearranged the living room.  In fact, I have gutted the bathroom, and gotten new flooring in the main part of the house, redone the laundry room, cleaned out the cabinets... the list goes on.  Now, I find myself wondering, if without my salon life, if I have a purpose.  Sure, the kids need help with their homework for a couple of hours, but when those hours are over, they are off doing their own thing.  Who am I when I'm not a hairstylist and a mom?  This question really bothered me the first few days of self reflection.  Now I have realized, maybe I'm no one without these two things.  And I'm ok with that.  I will be a mom for the rest of my life, and the relationships I have made doing hair will follow me through out the rest of my life.  And that, my friends, is a blessing. 

The amount of love shown to myself and my family throughout this safer at home order has been overwhelming.  I've gotten texts, phone calls, facebook messages, and even good old fashioned letters, encouraging me, and letting me know that people believe in me, and my business, and they are going to support it when we are allowed to reopen.  I've heard more people insist that my job should be considered "essential", and let me assure you, to me, my clients are "essential".  I have missed those smiling faces more than I can describe.  To my clients reading this, I want you to know that each and every one of you is cherished, and are a blessing to my life!  Thank you so much for supporting my family, and supporting my dreams.

On Monday, fingers crossed, I should get to reopen the salon.  There will be new regulations in place.  All a part of our new normal.  I will have to wear a facemask, as well as my client.  So I'm hoping that we have all had a chance to recharge, and that I will be able to see the smile in everyone's eyes, since I might not be able to see your smiling lips!

To the man who loves me next...

First of all, let me say thank you.  Why thank you?  Because obviously you are special enough that I am willing to let you in... willing to take the risk of being hurt again.  That must mean that you have shown me something that made me think you must be different... so thank you.

Next, let me apologize.  I'm damaged.  Broken.  I won't be easy to love.  Your job loving me will be a tough one.  I don't know how much of my heart I have left to give, although I promise, to the right person, I will give all I have to give.   I'm insecure, anxious, I overthink, and the only thing I am certain of, is that people leave.  I will push you away when I feel like you're getting too close, and just hope and pray that you fight your way back in.  When given too much time to think, I will try to talk myself out of loving you.  I will convince myself of all the reasons you are certain to leave.  And I will probably try to tell you about all of those reasons....  I'm working on that.  I keep telling myself I'm working on "rewiring" my brain.  But most of all, when I do that, what I'm looking for is just some reassurance.  Reassurance that you aren't going anywhere, and reassurance that you are going to be patient, as I figure out what a healthy love looks like.  The sad thing is, I know I'm doing it, but for some reason, my defense mechanism is stronger than my self control in this area.  Call it self preservation, if you will.  But, if you are patient, and ride out this storm with me, I promise I will love you like you have never been loved.  Teach me, show me, and I promise you, it will be worth it.  I am worth it.

I want you to understand that I don't need you.  I want you.  There is a huge difference.  I once had someone ask me, "Do you love him because you need him, or do you need him because you love him?"... read that again.... think about it... The two choices are very different, and very profound.  Sure, I will let you help me if I need it, although it may be hard, because I've been forced to be independent.  But understand that I don't need to be rescued, saved, or fixed.  I'm working on doing that on my own.  I just need someone to stand BY me as I fix myself.

And there might be times that I seem demanding, or stubborn. Which, I can definitely be both.... but this time, I refuse to settle for less than I deserve.  I refuse to settle for what I know is less.... I will not continually give more than I receive.  This time, my love will not be one sided.

I will do my best not to hurt you.  But I will.  Just as I am sure there will be times you will hurt me. My tongue can be sharp, and my shoulder can be just as cold.  But I really do try to avoid this.   My desire to not hurt people is so strong, that more often, I end up hurting myself.  That has been my pattern in the past.  A pattern that I've had a really hard time breaking.  So please, once you figure this out, don't take advantage of it.  Because I would never take advantage of you.  And please, do not mistake my kindness for weakness, everyone has their breaking point.

I'm done playing games.  Games are for kids.  Games only get people hurt.  If you feel something, say it.  If you want something, say it.  The bad boy routine is played out.  The bad boy thing was attractive when I was a teenager.  Not anymore.  Little girls are in to the bad boy thing, not grown women.  That ship has sailed.  I don't want that man that pretends to not have a care in the world, including me.  Now, I want a grown ass man with his shit together who isn't afraid to say how they feel.  Show me your sad, vulnerable side.  Because trust me, I have one too.  I want someone that can carry me on the days that I can't give it all, and I want someone who isn't afraid to ask me for help when they need it too.   So, if it is games you are looking for, if you love that chase, then get bored with the actual relationship, look for a different opponent.  Because love shouldn't be about games, which indicates that there are opposing sides.  Love is about oneness.  Love isn't about the chase.  Love is about the life you build.  If you aren't looking to build, kindly leave me alone.

I'm looking for that great, safe love.  I'm looking for the man that is just as proud to call me his when I'm standing in the kitchen in one of his tshirts, as he is when I'm all done up for a night out.  I'm looking for a man that is just as content spending a night in, as he is spending a night out.  I'm looking for that man that isn't afraid to shout form the rooftops that I am his.  I'm looking for that man that is willing to show me what real love is.  I want you to know that you may not have been my first love, but I'm hoping you are my last...  And if that man finds himself reading this, just know, I've been waiting for you.... Hello Handsome...

Finding Cora: part 2... deeper in the process

This is going to get raw.  Proceed with caution.

We have now reached the ugly part of the divorce.  Anyone who has gone through this knows what I'm talking about.  You know the part, where the gloves come off.  The part where the hurt isn't as fresh, and the person that walked away is no longer feeling guilty for hurting me.  The part where the sadness has transformed into anger.  The part where you never know which version of that person you are getting for the day, the nice one, or the angry one.  The part where I can ask a simple question and it gets a snarky answer in reply.  The part where I hear the things he is saying about me to people, and I have to pretend it doesn't bother me.  The part where public shame on social media turns into a game, to see how low of a blow can be dealt.  The part where I have to turn the other cheek, and not react.  Where whatever he does is ok, but everything I do is wrong.  Where it's ok for him to move on, but not ok for me to do the same.  The part where, for some reason, it seems as if hurting me is his goal.  The part that I never wanted to reach... the part where I hate him. The part where I can't stand to look at him.

"You will never be enough for the wrong person"
I'm trying so hard to take the advice of all of my friends and "not take the bait"...  and just not fight with him, not give him the satisfaction, but damn, that's hard.  For so long, not feeling like I had a voice in my marriage, I want to scream back, and finally be heard.  I want to scream that he no longer gets to control me through manipulations, and backhanded comments.  I want to scream "YOU DON'T GET TO DO THIS TO ME ANYMORE!!"  I want to stand up, and show that I am my own person, and Cora is someone, with or without Him by my side. I am enough.  Whether he saw that or not.  I am enough.

But if I wasn't seen by him in my marriage, what makes me think he will see me now?  What will fighting back solve? Nothing.  Absolutely nothing.  It will just drag this whole thing out.  If it was time to walk away, it's time I do just that... walk away.  I'm just ready to close this chapter of my life.  I'm ready to stop hurting at his hand.  I'm ready for every one of my past mistakes to not be used against me.  I'm ready to not have the kids used against me.  I'm ready to not have things like property settlements, and parenting time used against me.  I'm ready for him to not be able to threaten me with things "not working out for me" or "getting ugly".  I'm ready to stop shedding tears caused by him.  I'm ready to be able enjoy myself and not have it ruined with a nasty phone call or text from him.  I'm ready to not have a feeling of dread in my stomach when I look at my phone and realize it is him calling or texting. I'm ready to not have to "pretend" to be ok being around him for the kids, and to actually be ok being around him. I'm ready to walk away.  It feels good to say that.  I didn't know that I would ever get to that point.  But I'm here, and I'm ready.  

"Happiness is the best revenge"
I've heard it said many times that being happy is the best revenge.  But what if it isn't revenge you are looking for, but simply peace?   Revenge isn't a solution.  Revenge just fuels the fire.  Revenge implies vengeance.  It implies a hatred of sorts.  It implies it is consuming your thoughts.  Revenge is done out of spite, not out of healing.  It's time for me to heal.  I'm done with the one upping, and the fighting.   I'm done letting the anger and sadness consume me.  There was enough of that in our marriage.  The whole purpose in realizing it was time to walk away was to be free from this.... yet it continues.  When will it stop?  When will enough be enough?  How do people get satisfaction out of knowing that they have hurt someone with their words or actions?  How does it give some people relief to know that have exacted "revenge"?  I don't want revenge, I want peace.

I know as I sit here and write this, that I am not the only woman on this planet going through this.  I know that there is a woman out there reading this, nodding her head, completely relating to every word.  I know that I am not the only one crying, when my kids aren't looking.  I know that I am not the only one trying to heal from things someone will never apologize for.  I know that I am not the only one hurting from things I don't discuss.  This is why I write this.  I don't write this to air all of my dirty laundry... trust me, we would be here for much longer if that was my quest.  I don't write this to rag on my ex... that's the last thing either of us need.  I write this to tell everyone going through this, you are not alone.  There are countless other people going through what you are going through, and people who have already been through it.  And in my heart, I know that I will be ok, in fact, better, at the end of all of this, and so will you.  If I can do this, so can you.  Did you hear me?  You can do this.

Quotes.  I love them.  I search for quotes on the internet.  Friends send them to me daily.  I share them on facebook when they resonate with me.  Sometimes they are things I am going through, some times they are just things I think someone needs to hear, and they have nothing to do with me.  Meredith Grey is a rock star, right?  I mean, if you need some good words or inspiration, just watch an episode of Grey's Anatomy and after 46 minutes you will walk away with some "Meredith-isms" that will help you stand up and face your Derek.  What woman doesn't love Meredith Grey?  Who DOESN'T relate to her?  She is the philosopher of our generation. Move over Ghandi.  Sometimes there is true power in words.  So this is what I am asking of you, my readers... If you are, or have gone through a tough situation, share some quotes that have gotten you through your tough times.  Share them for the other women out there to read, to lift them up if they are struggling.  Let's flood each other with positivity, and support.  I know I am not alone in my situation, and my pain.  Let's power through this together.  Let's be each other's rock. You are not alone... WE are not alone.

Hello Cora, it's nice to see you... I'm glad you are on your way home.

Finding Cora

I am getting divorced.  There, I said it.

This journey has been an incredibly painful one.  Painful knowing my marriage is dissolving right before my eyes, painful self reflecting, painful knowing there are things I could have done better, and painful questioning whether or not I ever knew this person that I thought I would be spending the rest of my life with.  In a matter of a few signatures, I will watch all of the dreams and plans we had made together disappear.

The whole way home from that lawyer's office I cried.  I had just felt like I was hovering outside of my body, watching as we parted off all of our possessions, and things we had worked for our entire married life, and before.  I thought of our wedding day.  Of all of the promises we made to each other, of all of the dreams we had, all of the love.  I have watched the years whittle away at those dreams, and those feelings, leaving both of us feeling defeated, and no where near where we thought we would be over 9 years later.  Then I started thinking of all the nights, where I went to sleep wondering if I was even loved, as I'm sure he did the same.  I started thinking of all of the fights, where our pride meant more to us than not hurting the person we had committed to loving.  Somewhere along the way, we both lost sight of the fact that love isn't always a feeling, it's an action, a commitment... and now we are too far gone.  There are just certain things you can't come back from.  To be honest, I'm still crying.  I allow myself 15 minutes in the morning to let my feelings take over, then I have to boss up.  I have things to do.

There are people out there that are judging us... saying we didn't try hard enough, saying that we are throwing our lives away.  But the bottom line is: none of those people lived in our 4 walls.  None of those people know how hard either of us fought for this.  None of them saw the life we lived, when we BOTH tried our hardest to just put on a happy face.  They can judge, from their perch on the outside, but that will get them no where.  The end result is still the same.


I read an article the other day that said something along the lines of this:  when we realized we could no longer save our marriage, we started trying to save ourselves.  That is where we are at.  Trying to still form beautiful lives that we can both be proud of.  Our children were going down with the sinking ship that our marriage had become, and I also realized it was up to me to save them, as well as myself.  The worst part, was realizing that we were the reason the other person needed saving.  We had gone from being each others' safe place, to being the reason the other needed a safe place.  How does that even happen?  I can't answer that question with any certainty, but I can say that it wasn't one single event, it was very gradual, and happened so slowly we weren't even aware of what was happening.  Eventually, it came to a point where I was sacrificing myself in attempt to keep him content.  I was losing myself, drowning, so he could live.  I have to save myself.

I will not sit here and talk bad about him.  Although in a small town, I'm sure people are waiting for it.  I will not make this some dramatic episode, fit for a soap opera.  Although I'm sure people will take that upon themselves to run with a story and add to it.  There wasn't some huge event, or some sordid story.  What happened between us was just that, between us.  Sure, there have been low blows, and things that have happened since the split, but I'm trying my best to rewire myself, and not react. Some people crave the reaction, and I'm not giving in to that any more.  I gave in for far too long.

Here are the things I know about my soon to be ex husband:  he gave me a beautiful daughter, and for 10 years, let me share in the raising of his son, and he is not a bad person.  He might not have been good for me, but that doesn't mean there isn't good in him.  I would like to think that at times, we both bettered each other.  I would like to think that neither one of us can say that we hate each other.  And I would like to think that we are both walking away from this with some valuable lessons learned.  I wish him nothing but the best.  I hope that he can come out of this a better man.  I hope we can both internalize the things we know we did wrong, and not repeat the same mistakes.  I hope we can both move forward, and maybe somehow form a beautiful friendship.  I can't imagine ever hating someone that I loved as much as I loved him. I also don't want people to take sides, although I know that some will.  I'm sure that he would also say the same.  It won't benefit our daughter at all if there are two separate sides to her life.  Here are some things I know about me:  I will be ok, I am stronger than I thought, and I have some amazing friends in my life.

I will move on.  He will move on.  And while I'm sure we will both struggle watching the other live life without us, it is part of it.  It will be hard watching him for a life with someone else that he was supposed to form with me.  But, for him, I wasn't enough, or he would have stayed.  I am not  sitting around crying, playing the victim, thinking I'm an inadequate person, and a failure at life.  I'm simply being honest and real, and raw.  I was not enough for him.  My best was not good enough.  Your best will never be enough for the wrong person.  And I wasn't his person.

The bottom line is this:  he heard me, and I heard him.  We both heard the pleas of each other, asking for some give and compromise, and sometimes asking for change.  And I'm sure with some time, we will both make some of the changes that the other wanted.  But for some reason, we couldn't, or wouldn't do that for each other.  This is the part of my life where I get to start figuring out who I am.  I have to figure out my hobbies, rather than just following his.  I have to figure out what I like to do for fun, rather than doing what someone else wanted to do.  I have to figure out who I am without being Russ's wife.  And I will figure it all out.  This will be a painful, but beautiful journey.  I pray for peace.  I pray for healing.  And I will continue to pray for him.

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!

people.

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.

When National headlines hit close to home, and affect one of your best friends...

I spent most of this week mad.  Like, really pissed off if I'm being honest.  I went from crying, to fuming mad, to tossing and turning and losing sleep.  Now, I'm on the empowered step that my anger generally reaches.  Here's the story:

An event that made national headlines, and hit news networks all over the nation hit a little too close to home for my comfort.  My dear friend Jordan, and her son Jackson, were kicked off of an American Airlines flight because of their ichthyosis. Yes, MY Jordan, and yes, the disease that Ashlynne has, that brought Jordan into my life, caused her to be discriminated against in a humiliating manner.  No, let me rephrase that... the disease didn't cause it, ignorance did.

When I saw the post online, my jaw dropped.  There's no way, someone saw my beautiful friend, and decided because of her physical appearance that she was not allowed to fly.  I was terrified, and sad for her.  As soon as she text me that they made it safely to the hotel, the terrified dissipated, and the intense anger set in. I will set it up for you:

Jordan and her son Jackson were headed home to Columbia, SC from El Paso, TX from spending the long weekend with her husband before he deployed for the Army.  They boarded their American Airlines flight, emotional from just leaving Chris, when an agent from the terminal boarded the plane and asked the people next to her to get up so he could talk to her.  He then asked her about her and Jackson's "rash".  She explained to him it is a genetic condition called Ichthyosis, and it is in no way contagious.  The agent seemed satisfied, and reported back to the crew, and Jordan was ultimately asked to leave the flight.  Here is the story in her words:

The airline did reach out to Jordan, after her post was made public and shared thousands of times over multiple social media outlets.  They have been offered different settlements, but that is not the point here.  The point, is that this never should have happened.  We allow people who are unvaccinated to fly, we allow people who travel from other countries that have had communicable disease outbreaks to fly, but we insist a mother and son with a genetic mutation have a doctor's note before they can go home after an emotionally exhausting goodbye.  That is shameful.  And the fact that her husband Chris, had to leave to fight for this country, worrying and wondering if his son and wife were able to make it home should make all of us sick to our stomachs.  He was fighting for everyone of us, while his wife was fighting to simply be able to board a plane.

Ashlynne and I have flown multiple times.  In fact, Jordan has flown out here to Kansas to visit us.  And NEVER have we been told we needed a doctor's note to board the plane.  In fact, when we fly United and Delta, we have always been accommodated, and treated very well.  The flight attendants and flight crew always went out of their way to make sure Ashlynne had anything she needed, and was very comfortable.  This was a case of a woman, not knowing what she was dealing with, and acting out of fear; fear of the different.  And it is beyond sad that in 2019 this is even an issue.

I thank God that Jackson was too young to understand what was going on, and that Sadie, Jordan's 4 year old, was not with them.  I also thank God that this happened to Jordan at the time it did.  The Jordan I met 8 years ago wouldn't have spoken up.  She would have went quietly into the night, and probably only told a select few people that this even happened to her.  However, the Jordan I know today, is a mother, who is not only fighting for herself, but for her son.  The Jordan I know now has a voice, and she is using it.  I am so proud of her.  I am proud of her for being classy, and speaking gracefully in a situation where I wouldn't have been so kind.  What if this would have happened to Ashlynne and I?  What would that have done to my 16 year old daughter's spirit?  Would she ever be brave enough to travel again?  Would it cause her to have more doubt in humanity?

Ashlynne and Jordan in Nashville, June 2018

Ashlynne has had to deal with stares her whole, life, and dealt with bullying by exclusion.  She has heard the whispers, and noticed that she didn't get invited to birthday parties, or other social events.  But we have never had to deal with anything on this level.  Honestly, I don't know how I would even begin to handle this.  I know I would like to say I would handle it with the dignity and grace that Jordan has, but we all know me here, I doubt that would have happened.

I have had to stop reading the comments on all of the articles, and shared posts.  People are down right cruel some times.  I even had one person tell me I need to stop breeding, since my daughter has ichthyosis.  But, we have also had those people share similar experiences, and offer words of comfort, and encouraging words about Jordan and Jackson's beauty.  My ultimate hope out of this, is that the airlines take pause, and evaluate procedures.  There should have been no reason Jordan wasn't allowed to fly on that air plane.  But if that airline had questions, why was her luggage checked, and why was she allowed to board, before anyone took note, and humiliated her in front of an entire airplane full of people?  People have said that the airline employee was just doing his job, and don't get me wrong, she has said he was very kind, but he wasn't doing his job.  He was doing what he was TOLD, but he wasn't doing his job.  His job was not to follow someone's act of discrimination.  Agree with me or not, that's what this was.  A gross discrimination. We have got to start standing up for ourselves if we want to avoid anything like this in the future.  Things like this should not be happening.  This wouldn't be tolerated if this would have been a family affected with any other genetic disease that is more well known, such as down syndrome, or another skin disorder such as Albinism. So it won't be tolerated this time.  I don't know exactly how Jordan will handle things, that is not for me to dictate.  I do know, however, that I will continue to share, and discuss how wrong this was, and how policies need to change.  I will not go down quietly about this.  Something needs to change.  And the only way that will happen is if we use our voices.  This isn't about Jordan throwing a fit, or anyone trying to get their 15 minutes of fame, as people have accused. It's about right and wrong, and simple human decency.

As for what Jordan wants, many of you may be curious.  When I asked her that question she said "I just want people to take the time to listen, or to put a new protocol/policy in place to prevent further misunderstandings.  And I want people to change the way they look at people who may not look like them, whether it's skin color, gender, orientation, nationality, or disability.  We are all humans who want to feel accepted no matter where we go."

I couldn't have said it better myself.  Thank you Jordan, for using your voice.  You are one of the bravest people I know.  I'm honored to call you my "Seester".

I would fly anywhere, any time with you

OH! And did I mention the irony of this happening on National Rare Disease Day?  Yup folks, that's right February 28, every year, is Rare Disease Day.  Jordan definitely got her chance to speak out and raise awareness this year in a very unique way, courtesy of American Airlines.