FIRST National Family Conference 2014: Connecting at the Crossroads

Two years ago when we attended our first F.I.R.S.T. family conference in Denver, Russ and I made the decision that we would never miss another one.  After attending this weekend in Indianapolis, that resolve has strengthened even more.

Gavin and Ashlynne at the
Indianapolis Zoo

This year we loaded into my parents' van with myself, Russ, Ashlynne, Gavin, and my mom and dad and set out on the 10 hour drive.  It was pretty smooth sailing as it was interstate the entire way.  Other than the usual boy smells of stinky feet and gas, I was surprised that there were minimal meltdowns.  We decided to arrive a day early, and stay a day after the conference was over so we could fit in some sight seeing and other fun.  We went to the Indianapolis Zoo, went shopping, and on Sunday, my friend Krista drove up and we went to Sky Zone, an indoor trampoline park that quickly reminded me of my age.

But the highlight of the trip for me was definitely the conference.  I can not put into words the relief I feel when I walk into a place where I know that we, as a family, are not alone.  In Denver, I saw my daughter, for the first time, truly relaxed outside of our own home when she was finally around people who looked like her.  This year, it hit me just as hard.  But I was more relaxed myself, and observed how much more at ease we ALL were.  I didn't have my guard up, ready to divert stares, or answer rude questions.  Instead, we were able to interact with other families who truly "get it". Some of these families I have met before in person, others I have had on Facebook for years and felt as if I knew them, and others were complete strangers prior to the weekend.  However, they all felt like family.  I am always so surprised, when talking to new moms of an affected child, how fresh it all really feels to me as well.  I will never forget that feeling of trying to wrap my head around all of the information that is given, and how overwhelming it really is. There are a lot of memories, and emotions that fade as time passes, but this is not one of them.

Ashlynne and Portia, her little "mini-me"

On Friday, Rick Guidotti was our keynote speaker. He founded an organization called Positive Exposure that is doing AMAZING things.  Rick is a high end fashion photographer that was moved so deeply by a young woman he saw with Albinism on a street in New York that he was moved to action. He decided to put a face with many genetic disorders such as albinism and more recently, Ichthyosis.  He wants people to "change how you see, see how you change".  He wants people to look past the physical differences, celebrate beauty on all fronts, and see what we all share, which is humanity. So he is doing just that by photographing young men and women and celebrating their differences and their beauty.  There is no way that I can relay the passion that he has for his work.  He was an amazing speaker, and moved me to tears at several points during his speech.

We were part of a panel on Friday for fundraising.  Russ and I got to test our public speaking skills, and as usual, I talked more than I intended! There was also an anti bully campaign there as well, and these people gave me some good tools for my tool box on how to address the stares and the whispers.  Level the playing field.  Share our story.  Remove their power.  I need to be more outspoken with the stares, rather than just shielding her from the stares and whispers.  I have to give her the skills to deal with it when I'm not there to do it for her. And I don't want her to hide behind me. I want Ashlynne to stand tall, and be proud of the beautiful woman she is.

Overall, the weekend was perfect!  I am so grateful for all of the hard work that Jean Pickford and her staff put into this weekend, and their work in general.  We left feeling reconnected, rejuvenated, inspired, and motivated.  Thank you to everyone who shared our weekend with us!!! I can't wait to see everyone again in 2 years!! Goodbye was of course the hardest part of the weekend, but as I told the kids, it isn't goodbye, it's "see ya later".