Connecting At the Crossroads: FIRST National Family Conference 2014

Connecting At the Crossroads: FIRST National Family Conference 2014

Going into our first FIRST National Family Conference, I expected it to be all about the people – the physicians who came both to learn and to teach, the staff of FIRST who helped everything to run seamlessly, and most of all, the families.
And my expectations were far exceeded on an immensely deep level. 
Every time I turned around, I felt like my heart was being engulfed in a huge, understanding hug. Every introduction, every conversation, every physical hug and pat on the arm was both a push of support and a pull of inspiration and energy.

Rick Guidotti kicked off the conference for us in a huge, huge way as the keynote speaker – sharing about his experiences as he transitioned from a high-end fashion photographer to an appearance advocate, with a mission to humanize visual difference. Rick founded the organization Positive Exposure, where he uses his photography to capture the beauty of people with visual differences and disabilities.

Rick took some beautiful photos of all of the kids and families on the first day of the conference – can’t wait to see them! – and then I snapped a few of mine too 🙂

We enjoyed our short time in Indy, eating at the delicious local Cajun Creole restaurant, Yats…

Swimming at the pool (the boys anyway!)…

And getting some down time with some of the other moms that I’ve really only gotten to connect with via social media until now. It’s really amazing how close and connected you can feel to someone that you’ve never even met before.

During most of the day, Connor and Brenna spent time at the Kids Camp, where they had daycare staff on hand to play games, do crafts, and entertain the kids while the parents attended the educational sessions. It was Brenna’s first experience with a babysitter outside of our home, and she wasn’t wild about it, but she did well. Bless her heart, our Kids Camp provider Melissa was a trooper. We kept joking each day that we expected her to call in sick after dealing with our high maintenance girl who began crying at the sight of the daycare door. I hope Melissa had a glass (bottle?) of wine on Sunday night because she deserved it!

the kids in their masks they colored at Kids Camp!

We also got to reunite with our friend Evan and his family, who came to visit us in 2012! Brenna became pretty attached to Evan – his presence in the Kids Camp helped to calm her, and she loved giving him high fives. They even shared a smooch on the dance floor on the last night 🙂
Can’t believe how much they’ve grown since they were last together!
And guess who else we got to hang out with?! HUNTER!!
Hunter has become a celebrity in the ichthyosis community and an advocate for differences around the world, and finding a video about her when Brenna was just a few days old was the first time we felt even a tiny bit hopeful about Brenna’s future. Though Brenna was very shy and overwhelmed by all of the new people, Hunter continued to give her lots of love, and they definitely bonded.
Selfie 🙂
One morning, Brenna took an interest in Hunter’s scrambled eggs doused in ketchup, and Hunter generously offered to share. And it was a big hit – add it to the list of Brenna’s Favorite Foods!
On Saturday night, the last evening of the conference, there was a big dinner, dance and talent show that was SO much fun. The kids made it until 9:30, and I still didn’t want to leave!
And OK, I have to be completely honest that I thought the talent show would be totally cheesy…and then I ended up teary-eyed through most of it. I can’t even describe it except to say that these kids are just amazing.
And the dancing started early and the dance floor was packed! There are some theories about why, but so many kids with ichthyosis tend to be very outgoing and social – and the dance floor on Saturday night definitely proved that!
Also, I was in awe to meet this beautiful young woman and her mom. Bailey has lamellar ichthyosis, and is an incredible dancer. She just won her first beauty pageant and will be competing at the national level!
Seriously, I couldn’t look at her without just being overwhelmed with how beautiful she is and how gracefully she moves. She and her mom inspire me so much!

I also had the pleasure of presenting one of the breakout sessions at the conference with Jennifer See, who runs the blog Confetti Skin and has been hugely involved in FIRST for many years. We ran a panel discussion about social media, and it sparked a lot of good discussions about sharing information – especially in regards to posting photos of children with visual differences. We also talked about using social media to fundraise and other topics like that.
It was difficult to leave. Though we were eager to get on the road so we could return at a decent hour, it was hard to tear ourselves away from the goodbyes, knowing that we likely wouldn’t see everyone for another 2 years for the next conference.
With some of the FIRST staff

Coming away from the conference, I am inspired. I am more educated about Brenna’s condition, yes (thanks to so many wonderful parents willing to share about their challenges and experiences), but I am even more encouraged and uplifted. When the days of endless Aquaphor and avoiding the heat seem a little unbearable, I will think of this time and these families – who understand, who are doing it too, who are rooting us on while we cheer for them too. The ichthyosis community is a strong, positive and close group who are doing great things in this world.

We are celebrating the beauty in difference!

5 thoughts on “Connecting At the Crossroads: FIRST National Family Conference 2014

  • June 25, 2014 at 12:59 pm

    Thank you for sharing, all of you are inspiring and encouraging so many people around the world 🙂 Greetings from Panamá

  • June 25, 2014 at 2:45 pm

    You have such a beautiful family!! My mother who has ichthyosis, also is 85 years old. And we never new of so many people affected with this skin condition. She also had a cousins with ichthyosis also. I was so glad to learn so much more than what we ever new. Keep up the great work and support. I have enjoyed reading all of your blogs. Oh and she also uses Aquaphor!

  • June 25, 2014 at 3:33 pm

    I am so happy to read about your experience at the conference. I so wish we could’ve made it. 2016 for sure. Thank you for being so positive and an amazing advocate for all of us. I truly admire you and hope we can meet at the next conference!

    Anna & Genevieve Mae

  • June 25, 2014 at 5:18 pm

    It was wonderful to meet you and your family!! I was watching as Brenna and Evan got their pictures taken at the end of the conference! They were too cute!! Again, thanks for all you do for Ichthyosis Awareness. You inspire me Courtney!

  • June 25, 2014 at 5:18 pm

    The last post was from me, Karla Brown!

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