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.