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
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.


Wednesday, May 2, 2018

"Celebrating" Ichthyosis Awareness Month 2018

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

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

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

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

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

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

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

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

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

Cheers!



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