Friday, August 29, 2014

Where everybody knows your name...

I've been wanting to write about my experience since the 14th International Fragile X conference started... and ended... over a month ago.  I'm a little behind in writing but the experience remains as fresh as ever while feeling like it was forever ago.  Weird how that can be, isn't it?

My conference experience is a little (maybe a lot) different than most for a couple reasons.  Most obviously, because I am working and part of the faculty.  Or possibly even more obviously... because I'm Holly and in my heart with all that I am, I want this to be an incredible experience for everyone who attends.  While I need to hear what's being said in the sessions, I rarely ever make it to one.

Let me back up a bit and give you some history that might help with putting this all into perspective.

Parker and Allison were diagnosed with Fragile X Syndrome in the spring of 2003, Parker was 4 1/2 years old, Allison was just 7 months old.  Between Parker being diagnosed (March) and Allison being diagnosed (May) we saw a geneticist who laid out every out dated worst case scenario known to man, including the advice to "not have Allison tested". As most know, after a follow up call from the National Fragile X Foundation (NFXF)  and talking with Deborah Kwan and Dr. Randi Hagerman, my life changed significantly. I had hope again that Parker could do anything and had Allison tested immediately.  I always say Parker and Allison are the reason I get out of bed each day - and they are.  They are my heart and soul.  The NFXF is my strength to get through each day.  From the beginning they have been there for me and provided me with every bit of information I needed to help Parker and Allison on this journey. It all started with that phone call from Deborah to check on me and see how I was doing.

That August my mom and I went to Cincinnati, Ohio to attend my first Fragile X educational event hosted by the Tri-State Fragile X Alliance, a Community Support Network Group of the NFXF.  Dr. Marcia Braden, Louise Gane, and Dr. Randi Hagerman were speaking at the 2 day event.  It was there I was finally able to meet Dr. Hagerman (who we had an appointment to see the next month at the M.I.N.D. Institute). The event was organized by the dynamic husband and wife team of Joe and Leslie Garera who have a son, Nick, with Fragile X.  Meeting Joe and Leslie, being welcomed by them to their educational event, spending time with them and the speakers was so impacting on me.  I wish I could say I remember other families I met but I don't.  I remember being scared to death, mostly over what I might learn, and very out of my comfort zone.  Joe, Leslie, Louise, Marcia, and Randi each took time to talk to me and help me see the hope that is part of our lives.

The next month we were in California for the week of testing, evaluations and recommendations from the amazing team at the MIND Inst.  We were embraced by Dr.s Randi and Paul Hagerman, Louise Gane not only took time to meet with us during our visits but came to the Ronald McDonald House where we stayed to spend more time together.  We met the amazing Kerrie and Laura (SLP/OT) who lit up the room when they walked in.  It was a jam packed week made possible by our incredibly supportive church (Trinity Lutheran) with an abundance of information we attempted to absorb between tests, forms and a little down time.  We also took a drive into Walnut Creek to meet with the staff of the NFXF, Robby Miller and Teddy Palmer, both who I had spoke to many, many times took time away from their day to really sit down and listen to us, get to know us and take a few pictures.  Every minute of that exhausting week was incredible. Every person we met was so terrific there is simply not an adjective incredible enough to describe them or explain the impact they made on my life. There was one moment that stood out from all of the rest though...on our last night there while standing in the kitchen of our Ronald McDonald house as I held 11 month old Allison, Louise Gane reached out and held onto my arm she said, "I know this is going to sound crazy but I also know I am right, I can't explain it but it's going to happen.  You... YOU are going to make a huge difference in the fragile x community. You are going to do amazing things for the families.  I can see it in you. You are going to make a difference."

I remember looking at her and thinking "You have no clue, lady!" which showed by the look on my face.  She simply said, "Trust me on this one.  One day, a few years from now, I'm going to say "I told you so."" We said our goodbyes and prepared for the trip back to Illinois.

I have always been an extremely shy person.  Sometimes, it comes off as snobby. I'm not snobby at all, I'm just incredibly shy and ridiculously anxious. It's hard for me to meet new people and make friends.  While determined when I find something I am passionate about (just ask anyone who knew me when I was a certified car seat technician!), I would never consider myself "outgoing". While I wanted to believe Louise, in my heart I knew she could not have been more off base with her prediction.

Right before we left for California I was contacted by a high school senior from the neighboring town. Someone at my church had given her my name to serve as a mentor for her senior class project.  She had decided to do an awareness walk, I had promised to meet with her when we returned and I did.  That's when Andrea (Schnarr, now Wronkiewicz) came into my life.  We spent the next few months planning an awareness and fundraising walk for Fragile X.  That March (2004) the first Walk for Fragile X was held bringing together 150 people and raising $5,500 for Fragile X.  It's a spring time tradition we continue each year, this past April, we just held our 11th walk (and have since added a 5k!)!  Working with Andrea forced me to begin to come out of my shell... just a tiny bit giving lectures on Fragile X to local groups and organizations who would support our efforts.

When July of  2004 rolled around my mom, Colleen, and sister, Dawn, (who also has a son with fragile x) and I flew to Atlanta Georgia for the International Fragile X Conference.  It was my first International Conference and while extremely excited to be there, I was also completely and totally freaked out and overwhelmed.  On our first day as we were taking the escalator up I was scanning through the faces of the people on the escalator next to us going down.  That was when it happened.  I saw Joe!  Yes, Joe Garera and I immediately called out to him.  He waited at the bottom of the escalator with a slightly puzzled look on his face as my mom, sister and I approached him you could see him thinking.  I said, "Joe, right? From Kentucky?"  He said, "Yes" (you could totally see the wheels turning) I said, "My mom and I" and he cut me off and said, "came to our educational event last fall!"  He remembered.  Not only did he remember we were there but that I had 2 children and my sister had a son that was just diagnosed.  He asked about our dad who we had learned passed the gene onto us 3 girls.  We learned that Leslie stayed back at home with Nick while Joe attended the conference during our few minutes of catching up.  During our time at the conference, Joe checked in with us frequently and made several introductions to other families.  When I finally saw Randi, Louise, Marcia, Kerrie and Laura - I was shocked to discover they remembered everything about our family and quickly asked about the kids, including if we followed through with specific recommendations. 10 months had passed since we had seen each other.. yet they remembered.  That made such an impact on me. To this day, each of them remains not only my friend but someone I respect and turn to and will be forever grateful to them for the example they set for me.

This was also the first opportunity for me to meet people I had only known through email thanks to the Emory Listserv (this was WAY before our Facebook days!) including someone who remains one of my dearest friends today... Mary Beth.



About a day into the conference, a passion deep inside came to light and I knew in my heart what I needed to do.  I needed to extend this feeling to every single person I could. I needed other families to know how I felt at this moment.  I needed them to know they were not alone, they were understood and they had it in them to change the world.  I wanted them to know the feeling of this bond between fragile x families.  And I wanted the world to know what Fragile X was.

I've often said that the diagnosis changed me.  It really did redefine who I am and my purpose in life. I understood it clearly in Atlanta, it was my "Aha" moment, if you will.  Everything was clear to me.  The importance of the family connections, the importance of awareness, education, fundraising... all of it (well mostly, it took me until 2006 and my first trip to DC to understand Advocacy!) and it became my mission in life to make a difference.

Fast forward through the St. Louis (2008) conference (where I was asked if someone could have their picture taken with me for the very first time *Talitha, I'll never forget that moment!) , the Detroit (2010) conference (where I may or may not have stood on a table to bring everyone in the bar to one big area and make introductions so we were one big group versus small individual groups. It's also when I met Melissa in person and refused to let her leave my side all week) and the Miami (2012) conference (my first conference as an employee with the NFXF) to where we were last July 2014... Orange County, California.

Over the years I've been able to learn something each time, I've become a little braver and bit more out of my shell each time and I've come a long way.

What I want, every conference, is for every single person to feel like family... because they are.  I want them to know someone knows their name, someone knows their story and if I don't.... I want to learn it.  I want to make connections.  I want to help people meet others. I want them to get the most out of this experience as possible - and that happens when you relax and are surrounded by family and friends.

Just as people have watched Parker and Allison grow up over the years, I've watched thousands of children grow up too thanks to social media. It's often a bit of a shock value to some when I pull together 15 - 20 people in the restaurant or bar and introduce them all to each other. It's important to me to remember something about everyone; where they are from, how many children, something - a detail to share to start a conversation to make it a little bit easier. It's important to me because every person I meet, even if just on Facebook, is important to me.  Our lives, while filled with a million amazing and happy moments, are also difficult.  I get that, man do I ever get that.  I understand the anxiety we live with each day, the shyness and how that can come across.  I get it. I live it.  I understand.

I know, because of my first international conference experience, the difference it makes when someone knows who you are.  That is my goal, to help you know how important you are to me and our community.  To help you have the best experience possible and make all of the connections you would like to make... and then more.

All week long the same thing goes through my very busy mind.  The theme song to Cheers...and not only because our conferences *may* be known for closing down the bar a night or two or three...but because - these lyrics, these words ...

are so incredibly relevant to our lives and to the personal mission I have.  It's not my job, it's a mission within my heart that I've had since 2004.  So whether I see you across the lobby, in the elevator or while we are eating, or I see on Facebook that you are arriving at 1 am and I stay up to meet you so you feel welcomed - I want to say "hi" I want you to know somebody does know your name - because you are important to me and to our community.... our troubles are all the same... I want to be sure everybody knows your name.

I know how intimidating it is to come to the conference, especially the first one, I know how you want to escape to your room and just get away.  I also know that, if given the opportunity, a conversation can change all of that and bring you back.  It's why I will always do my best to say hello and initiate that conversation.  Now and then, ok once but I'll never forget it, I may not recognize someone - odds are it's someone I know well and I'll never live it down (*disclaimer, please do not hold it against me if I do not recognize you after you leave the gym or pool!)  but we'll laugh about it for years ;-)

We are in this together.  I've made the most amazing, life-long friends during this journey both professionally and personally, I've taken the knowledge I've learned and shared it with anyone who will listen, I've worked to empower families and from my heart, without significant effort but with tremendous passion - I've connected families from all over the world.  It's amazing enough to get to do it through emails or social media, but there is no comparison to the feeling of making those connections in person.

I am that person who will stop in the hall (or ask you to walk with me) and not only listen but want to hear what is going on to see how I can help.  Those conversations often prevent me from attending many sessions, which is where my conference experience differs from most, but impact my life in the most wonderful way.

It's the hugs, the words "thank you", the tears of appreciation that make every second worth it and the reason I won't ever change this about myself.  While it makes goodbyes  "until next times"  harder, it makes the time together more valuable.

Sometimes... it even leads to getting a cape (undoubtedly the most thoughtful people I have ever met live the Fragile X Way!) which is seriously, pretty incredible too :-)






I never imagined myself where I am today and while I've made mistakes, I've learned from them and grown tremendously.  When we say "it takes a village" it's not just for our children - it's for us adults too.  We have the most spectacular village out there, I want to be sure each of you realize you are a very important member of it.  You, like me, are someone special.  You make a difference to me and to others.  Together, we take our lights that shine and brighten this world.

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