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.

What Grief Has Taught Me This Year

Grief-  noun- deep sorrow, especially that caused by someone's death.

But that doesn't begin to cover it.  I have witnessed enough grief in the past twelve months to last a lifetime.  February 11, 2019 marks one year without Justin, 365 whole days.  Three hundred and sixty five days that I have watched one of the people closest to my heart trudge through her grief. 

Justin, doing what he loved.

On February 11, 2018, Justin David Cunningham was found unresponsive in his rodeo trailer.  When he failed to show up to the roping arena where he was competing in a roping that weekend, his friends went looking for him, and found him, fighting for his life on the floor of his trailer, a victim of carbon monoxide poisoning.  His generator was too close to his living quarters, and due to the cold air, and lack of wind, it came back into the trailer, and made our friend a statistic.  One of my very best friends was the love of his life.  She was to drive to Loveland, CO to be with him later in the day.  She never got to see him alive again. The original plan was for "A" to be with Justin at his roping that weekend, but at the last minute, she went to a concert with a friend.  Because of this, "A" has struggled with a tremendous amount of survivor's guilt.  All she could say at first, was she should have been with him, while all I can think is, thank God she wasn't.  Miraculously, after intensive veterinary care, their little corgi, Maizy, who was in the trailer with Justin, survived.  One thing is for sure, this world is a little less bright without Justin in it.

Justin was a smart ass.  He loved to argue.  And I mean, LOVED to argue.  He would argue just for the sake of it.  Even if he had the same view as you, he would take the opposing side, just to make sure your reasoning was sound for your beliefs.  He would use big words just to see if he could confuse people.  He was one of the most intelligent people I have ever met.  And he loved to pick on A's friends, but would do it in a way where you couldn't tell if he was making fun of you, or actually complimenting you.  And his compliments... oh they couldn't be matched.  One of my favorite memories of him was the time he told me I was actually much more intelligent than I looked.... Thanks Justin.  But he said it with that boyish grin that I imagined charmed his way out of many sticky situations in his life.  As I type this, I am laughing, with tears rolling down my face, and sorrow in my heart. 

Here is what I have learned over watching, and feeling the grief of Justin's passing:  It's not a "process" as they say.  There are no steps to grief.  You simply have to get through each day.  You simply have to breathe.  You may have a day, or even two, where it is easier to function.  Then, it comes in waves.  Like a tsunami, out of nowhere, the waves wash over you, and you can't breath, can't catch your breath.  Then the flood after, where you are drained, trying to get your life back on track from the last emotional setback.  But, the next day comes.  And you may feel like a total trainwreck from being up all night crying, and you may think you don't have it in you to "people" that day, but the world around you doesn't know that.  And bills need paid, and jobs need done, and somehow we have to make it through the day. Grief is also not limited to immediate family, or a close circle of friends.  No one is safe from grief.  Grief has struck me so deeply because of my friendship with Justin, but also because of the immense pain I see A in.  My empathtic side has pulled me in, like the undercurrent of a wave. 

Being an empath, I find it impossible to separate A's grief over her loss of Justin from my own grief.  I feel every tear she sheds with me on the phone.  I feel the gut wrenching blows that she has been dealt since his passing.  She was displaced from her home, and there have been battles over possessions, and suddenly, the separation from his family, which she viewed as her own.  And deep down in the depths of my soul, I have felt all of this with her.  I have cried with her, screamed with her, and struggled with her.  This loss has changed her.  And it has changed me.  For so long now, I have wondered why I have struggled with the loss of Justin so deeply.  I loved him, yes, but he wasn't my the love of my life.  He wasn't a part of my every day life.  He was my best friend's boyfriend, so he was important to me.  He was my bud, we joked, we argued for the sake of arguing, and we joined forces and made fun of A together any time we had the chance.  But he wasn't my boyfriend, he wasn't my family, so why am I still hurting so badly?  And I realized, I'm still grieving.  I miss him. 

My favorite picture of A and Justin. 
His smile couldn't be matched.

Here is what I have learned about my friend:  While I always knew A was a strong person, I look at her in awe now.  She has an amazing family, and an amazing support system, or I don't know how she would have gotten through this past year. Without a doubt, Maizy, and the fact that she survived has given A some light through all of this, but to say her life was turned upside down would be a gross understatement.  No 20-something should ever have to deal with being, basically widowed.  She cried, and broke down, and mourned, still does, but she has also got up and gone to work, and saved peoples' lives in the ICU, having flashbacks of seeing him in the hospital.  She has supported me in my emotional breakdowns that I feel pale in comparison to what she has been dealing with.  And she assures me that her grief doesn't stop her from being there for me through things in my own life.  She has started classes, to pursue dreams she and Justin had discussed.  She is pushing forward.  She cries, but she laughs, and she smiles when she talks about him.  She makes fun of me when she knows he would take the opportunity, and tries to give his intelligent, great advice when needed.  All of this while grieving.  She is carrying on, and honoring him by the way she lives.  And I am so incredibly proud of the way she has lived over the past 12 months.  She is an inspiration in a situation that I hope none of you reading this every have to be inspired to get through.  She has counselled people going through similar losses, and offered support to anyone she feels may be in need.  She is, quite simply, the best person I know.  I know that she will continue to push forward, and continue to amaze all of us close to her.  And I know that she will make him so proud, as he always was of her.  I know that she will also grieve, sometimes in private, and sometimes, surrounded by the people she loves.  What I don't know is when it gets easier.  Because 12 months later, 365 whole days later, it's not easier.  I still miss him terribly, so I can't imagine the depths of her sorrow and emptiness. 

Don't ever let anyone put a timeline on your grief.  Don't listen to the "you should be moving on by now" or "you should be doing certain things by now" advice.  I have grieved many losses in my life, but all differently.  No loss is ever the same for any person.  Every loss hits every person differently, and at different times, in different ways.  You just have to dig deep in yourself, and find whatever motivation you need, and you simply fight.  Fight for that day.  Then fight for the next day.

You can do this. Just fight...  Just breathe....

What I learned as a coach this summer

I love and adore my kids.  I love and adore my friends' kids.  But I can totally cop to my weak points, and patience isn't one of my strong virtues.  At most events that are swarming with kids, you can find me kind of fading off into the corner, trying to keep my anxiety at bay.  And let's be honest, I know that Breckyn and I butt heads more than the average mom/daughter combo.

So when I got asked to help coach the Abilene Attack 8 and Under softball league and traveling team that Breckyn would be playing on this summer, I really didn't know how well I was going to do, or even how much I would like it. Was playing in a weekend long coach pitch tournament going to be like watching paint dry?  By the end of the season, was I going to want to run away?  Or after each practice or game, was I going to be running for my car as fast as I could in search of the nearest bottle of wine?  Was I going to be able to coach Breckyn without absolutely terrifying the other girls, or catching a battery charge?  But, softball is in my blood.  I have been on that field since I was four years old, and  if I was going to give coaching a try, I guess this summer was as good a time as any to find out if it would be a good fit for me.  But before I knew it, these 10 little boogers wormed their way into my heart, and I fell in love with them all.

So this summer, when I signed up to teach a group of 10 eight year old girls the fundamentals of softball, they ended up teaching me some of the fundamentals of life.  They reminded me that we should all strive to be a little more child like.

Breckyn, being coached on first base in her
first ever tournament game.

They showed me that kids, really just want to see each other succeed.  There were no cliques out on that field.  It didn't matter who was in who's class, or who had a nicer house, or who had nicer clothes, or whether or not they had played on the same team before.  When those 10 girls were on the field together, they were one team.  They were cheering each other on.  Celebrating each other's successes together, and encouraging each other when a goal wasn't reached.  They didn't hold grudges against a team mate for striking out, or not getting an out.  Instead, they helped them work on how to get it the next time.  Some of the more experienced girls would pair up with the younger ones, like Breckyn, to play catch.  In fact, we had a girl who had never played softball before a day in her life, and she was accepted just like the others who had played for several years.  It didn't matter skill level, or years of experiece, they just wanted to play catch with their friends. 

They pushed each other.  They knew what their team mates were capable of, and they pushed them to do their best.  Not one single time did I hear one of those girls begrudge another on their great hit, or nice play.  They were proud of them.  They were happy for their friends.  There was ZERO jealousy.  Some of these girls might not have even known each other before the season started.  But they found something they all had in common, softball, and they let it form a friendship among all of them.  They never shunned another one because she wasn't in their circle.  Everyone was included.  The more the merrier. 

Between games were some of my favorite times.  I love the
commraderie that is formed on tournament teams.  Some of
my best summer memories growing up were made hanging out
with my softball team between games.

We had some great times at tournaments in between games, hanging out, playing, and telling stories.  Eating our sandwiches, and cooling off in the shade, bonds were formed, both among the girls, and among the parents.  Most of the parents, I already knew, but I got to know them more than just on the surface.  And we all got to do something very important to us all, which was cheer on our girls.

We also had some pretty somber moments.  One of the girls on the team lost her dad, very unexpectedly mid-season.  She missed a game because of it, and when she was gone, the girls weren't being nosy, asking what happened, they were just asking about their friend.  They just wanted to see her, and know that she was ok.  They just wanted to make her feel better.  They just wanted to support their friend, no questions asked.  They didn't want to know what was in it for them, they just wanted to make her feel better.  And when she came back, you better believe, those other nine girls were her biggest cheerleaders on that field and in that dugout, trying to get her mind off of everything else going on. When those 10 girls got the opportunity to step out on the field together, they got to shut out the rest of the world, and just play softball with nine of their best friends.



I'm so proud of these girls for working their tails off and
making so much progress this year!

We went undefeated in league, and lost a few travel team games.  I can't take credit for this.  Our head coach did most of the work.  I was just support staff.  But these young ladies showed me so much about good sportsmanship.  They won with dignity, and lost with their heads held high.  Not once, did I ever hear them taunting the other team, or talking trash, that we too often hear with older kids in the sporting world.  There were never bats slammed down, or helmets thrown.  There was only high fives, and words of encouragement.  I was so proud of every single one of them.  Six out of the 10 girls will be moving up to the next age bracket next year, and they won't be on the same team as Breckyn.  So our team won't be together again next year.  I will have a new group of girls to work with next year.  I'm going to miss those girls so much next year, but I know they will do amazingly well at the next level.  And I'm not going to lie, I shed a tear or two after our last game.

Wouldn't it be nice if we, as grown women (and men) could get back to that?  If we could eliminate cliques, and social stigmas, how much nicer would this world be?  If we could go back to those innocent days, and for an hour and a half at night, we got to just hang out with friends, playing the sport we love, how lucky would we be?

To the parents of my girls, thank you so much for sharing your girls with me this summer.  Thank you for letting your girls remind me about so many of the good things in life.  Thank you for trusting me to help guide them in their growth in this sport that I love so much.  But most of all, thank you for making this experience a positive one for me.  To Jeff, thank you for giving me the chance to be your assistant coach.  You will never know how much that means to me.  You, and this group of girls, made my summer.  And for that, I will forever be grateful to you.  Will I coach again?  If I'm given the chance, absolutely.  And whether I have the same group of girls again or not, know that I will always be cheering this group of 10 girls on no matter what.  For they have taught me more that I ever could have taught them in one summer.

Now everyone put your hands in... "Attack" on 3!  We got this girls!

F.I.R.S.T. National Family Conference 2018

Every two years, F.I.R.S.T. holds a national family conference for families affected by Ichthyosis.  This year, we got to take on Nashville, TN.

We drove the whole way, which was quite the cramped road trip.  I, being the wanderer that I am, wanted to stop and sightsee.  You know, a lot of my childhood memories on vacation were made on the journey, not once we reached the destination.  Russ, on the other hand, was on a mission to get there, and get out of the truck.  So, since he was behind the wheel, straight to Nashville it was...

This was a first for the Cossel family.  Our first time spending any time in Nashville, and also our first time taking all four kids to the conference.  In the past, we have just taken the older two.  To be honest, I was a little worried about taking the "littles", as we call them.  At 7 and 9, I wondered how much they would really understand.  Does Breckyn even look at her sister and realize she's different?  Would she recognize these other kids as having the same skin disorder her sister does?  Would she understand that different severities of the condition?  Does Logan, who IDOLIZES Ashlynne, notice how much of our lives Ashlynne's ichthyosis affects?  Or does he just think this is normal?  I really thought this would be a profound experience for them... And it wasn't.

I don't mean that in a bad way.  I mean it in a perfectly beautiful way.  My children didn't shy away from the other kids at the conference.  In fact, both of them gravitated towards the kids with ichthyosis, rather than the kids without.  I think they saw the beautiful souls in these children.  I think kids see past all of the things that adults get hung up on.  And this weekend just drove that point home for me.  This was just a weekend, in a really cool hotel, with a pool, a dance, and a bunch of new friends.  In fact, it kind of worried me some with Breckyn. She met a little friend, Brenna, who is merely a few months younger than her, only much smaller because of her ichthyosis, and Breckyn kept trying to pick her up and carry her everywhere.  Brenna eventually let her know that she was over it, after many attempts of me trying to get her to stop.  Breckyn didn't hesitate to touch, and love on these other kiddos.  She threw all caution out of the window and was just Breckyn.  And Logan, he met a new best friend, Miles, who has the same type of Ichthyosis as Ashlynne.  He loved how much Miles looks like his sister.


Part of "The Squad"

Ashlynne and Gavin, however, reconnected with a bunch of old friends, which they named "the Squad".  This group of teens and preteens was practically inseparable all weekend, and had some pretty interesting stories for all of us.  I walked up to the table they were all sitting at one point, and they were all texting each other in their group chat from across the table.... I guess it's a millennial thing... But I get the feeling the "squad" will do a great job keeping in touch, and making more memories.  They also sat on the panel of a teen panel, where parents and younger kids could pick their brain about growing up with Ichthyosis.  I was so proud of them for answering questions honestly, and in front of a large group of people.  This was something a few years ago I never would have seen Ashlynne doing.  These are her people, and this is where she feels most comfortable.  I feel like these conferences "recharge" her to be able to get her through the next couple of years of life. 

Jordan has become one of my best

friends.  I couldn't do life without

her!!

The highlight of the conference is always the talent show and dance that is held Saturday evening.  These kiddos, that are normally shy, and hiding behind their parents because they are tired of the stares, or afraid of not fitting in, get to get behind a microphone, or a piano, and shine.  I normally start crying before the singing even starts.  Their bravery, and pure talent amazes me.  I wish I was half the person that most of these kiddos are.  They inspire me, every single day of my life.  At the Saturday night festivities, we also got to meet baby Anna.  Her mom has a blog, and a facebook page, Hope for Anna, and she is the most stylish, sweet little baby you could ever see!  Ashlynne was in heaven getting to hold her and play with her.  I think it seriously put the cherry on top of the conference for her! 

For me, it was a much needed family reunion with my "second family".  The relationships that I have formed with these other moms, dads, and children, as well as faculty and staff are irreplaceable.  They get it.  We get to share our anger, and bitterness for what the world has thrown at us, and we get to celebrate our own beautiful.  We get to support each other in this exclusive club, that none of us asked to be in, yet we have grown to love over the years.  These are my people.  These are the ones who keep me going on my bad days.  The ones who I can text, and vent to, because my heart is broken that my daughter can't have a typical teenage experience.  The ones I can call when I don't feel like I can handle yet another doctor's appointment.  These are the ones who cheer me on, because they are right there with me.  Mom's Group, which is held on Saturday, is always a huge release for all of us moms, and definitely my favorite part.  It involves advice from us seasoned moms to the new ones. And when I was in their shoes, it was the best thing that happened to me.  I was able to let it all out.  And continue to do so every year.  But it wasn't all venting and crying.  Good memories are always made.  Maybe a few too many glasses of wine were involved, but nonetheless, there were good times!

Ashlynne, teaching Matt, all about the Nintendo

Switch.  Matt is dad to Calvin, who also has

ichthyosis, as well as younger twins!

In two years, I will get to see these people again face to face.  And I will also meet new families, that like myself 15 years ago, had never even hear the word "ichthyosis".  And new members of this club, that non of asked to be a member of, will join our "family".  Until then, the text messages, face time, and facebook groups will have to get us through.  Saying goodbye is always the hard part.  But we have to say goodbye, to go back into our own corners of the world, and to allow our kids to continue making this world a better place with their absolute awesomeness.