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.

Sunday, March 3, 2019

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.

Sunday, February 10, 2019

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....

Sunday, July 8, 2018

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!

Wednesday, July 4, 2018

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
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.

Wednesday, May 2, 2018

"Celebrating" Ichthyosis Awareness Month 2018

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

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

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

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

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

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

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

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

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


Thursday, December 7, 2017

An open letter to my Ex and his new bride

Dear D and K,

Congratulations.  I mean this from the bottom of my heart.  I could not be more happy for the two of you.  You two have just started the journey of your lives together, and I want you to know, you have my full support.  I will always have BOTH of your backs.

To K (the new bride):

Welcome to the family.  Yes, I said "family".  For even though we are not together, and haven't been for years, we have continued to function like a family for G's sake.  Not a traditional family by any sense of the word, but the family unit we have created.  We still do holidays and birthdays together, and we still hang out.  He is my best friend.  You have just married my best friend.  I know that sounds funny, coming from his ex, but it's true.  We were two very imperfect people, who made a perfect son.  But over the years, we have done a very good job of continuing to love each other.  Not in the sense of being hung up on each other, or longing for each other, but in the sense of respecting each other because we have given each other the greatest gift imaginable; our son.  Through peacefully co-parenting in the beginning, to a deep friendship now, we have a unique situation. People have always thought our relationship was odd.  I go to his house parties, he takes my children that aren't his to his house for the weekend, we talk regularly, and sit together at ball games.  We are friends.  It is the best possible scenario for our son.  You have accepted this, even embraced it.  And you have become my friend too.  That's how I know you're right for him. Please be good to him, better than I was.  Please handle his heart with care.

On top of being a newlywed to my friend, you are now my son's new stepmom.  And I don't think I could have picked a better one for him.  See, I've always wanted to know (and approve) of whoever D ended up with, because I knew this person would have a huge impact on my son.  God forbid, if anything ever happened to me, you're it.  You would be his mom.  So it has always been important to me to know this woman who would have such a huge role in his life.  I WANTED to know you, and be your friend.  I want you to know me.  I want you to know how much I love my son.  I want you to know and support how he is raised, and what I expect of him.  Lucky for me, you are very willing to have this type of relationship with me.  I see it already.  I see the love you have for him.  I see how you have his back, and how you bring tenderness to the house that was formerly a dude's pad.  I have complete confidence that you will make that house a home.  I am a step mom too.  And at times it seems like a very thankless job.  You're behind the scenes, making sure everything is ready for when he is at your house, making sure presents are bought for birthdays and holidays, and most of the time, it's Dad that gets the recognition.  Know that I know, and I see.  I know, and am thankful for all you already do, and all you will do for him throughout the years.  I hope you always have my back, and I will always have yours.  We girls have to stick together ;).

To D (the groom):

Congratulations, my friend.  I'm so happy for you.  You know for years I have worried about you.  I have worried about you being alone in that house when G isn't there.  I worried the loneliness would at some point over take you, and your old demons would come back to haunt you.  But in your happiness, I have peace.  I know that K does and excellent job of keeping you in check.  And I see in your eyes that she does an excellent job of keeping you happy as well.

Be good to her.  Better than you were to me.  Better than we were to each other.  Learn from the mistakes that were made with us.  Create the life you always imagined.  But most importantly, love her.  Love her through her flaws.  Love her on those days where she just may not feel like being perfect, and shouldering the load, for we all have those days.  Love is an action, not a feeling.  She is good to you, and good to our son.  You finally found what you have been waiting for all these years.  Enjoy every little moment.

Be good to her son.  You are now a step parent.  As long as you treat her son how you expect her to treat G, you will be on the right path.  And try to remember, there is no such thing as "step" kids.  They're just kids.  You have gained another kid.  Our crazy, messy family unit now has another little guy in it. Thank you for bringing that blessing to us.  Kids can never have too many people to love them.  Remember that.  Remember that being a step parent is often a thankless job.  K may not say "thank you" for all that you do, but she is thankful, and her little guy is too.  Just remember, you won't get praised for everything.  Don't expect it.  It may not be seen at the time, but some day, he will look back and know you were there for him.

As you make new traditions with your new wife, know that I understand some things may change with us, as they should.  You may not come to me for a woman's perspective on things, or relationship advice.  It may not be me you call when you need to vent about something. You may not be at all of my family functions anymore, because you have your new in-laws to consider.  I don't begrudge this.  I am happy for you.  But I want you to know that you are still, and always will be welcome, as are she and little man.  We have just added more to this chaos we call our family.

With much love,