Monday, July 30, 2012

A Little Melancholy

I never chose the Fragile X life….it chose me.  Today, as is the case in past years, when I return from an International Fragile X Conference, I often feel a bit melancholy.  There is so much time and preparation that goes into attending a conference, and then so much energy that continues to resonate afterwards.  This was my 10th conference, and each time it has had new meaning.  One would think I would grow tired of the whole thing!

One of the most common questions I heard this time around was, “Do you still learn something when you come?”  Or, “What do you continue to get out of the conference?”  I know exactly how to answer.

Honestly, I do not even remember my first conference.  It was in Denver, Colorado, and there were a mere 100 or so people in attendance.  I was one of many in a daze.  I really had no idea what to expect, and I am not sure what I learned.  I do, however, remember some of the people that I met.  Few are still present today.  Conference #2 through 9 had a different meaning for me each time.  As my boys grew, so did my thirst for knowledge in different areas.  When they were young, I wanted to know what the future held for us as parents.  I also wanted to know how I could help my boys today.  I wanted to know how I could help make their life better and more productive.  I wanted to know how to help myself.  Little did I imagine that the friendships that I formed would become one of the most important things that I would take away.  The information I gained from the many experts has been invaluable (as you know if you saw “Mrs. Rogers’ Neighborhood”), and really could not be learned in a better setting.  Having every expert in one place at one time……priceless.

I made a personal decision to formulate a goal each time I decided to attend a conference.  This helped me feel like it had a purpose and was meaningful to me.  Whether it was networking, learning about adult issues, or toileting training, I set a goal.  During the early conferences there weren’t nearly as many attendees as there are now.  Fragile X Syndrome was just making its way onto the circuit.  I have many happy memories of early conferences and of the people that helped me through those times.  Some years ago, the National made a routine of incorporating young adults with Fragile X into the awards ceremony.  These presentations were heartwarming and always made the entire audience cry.  It also gave me so much hope.  I think hope is the one main thing that I have always come away with and I believe it’s become an addiction!  Now, it is my turn to provide hope to others that are just making their way down the Fragile X road. 

The St. Louis conference was really the first time that I had the courage to present “Mrs. Rogers’ Neighborhood” in its current form.  I spent many hours rehearsing it and preparing notes to tell the story of my boys.  I actually had taken several years off from conferencing and missed Washington, D.C., but that has all been worth it.  I needed that time.  I needed to focus on the one thing that is most important to me---my boys and their happiness.  The drive to help them become productive, happy members of our community is what really keeps me going every day.  But, it is the families of Fragile X that keep me coming to conferences. 

While I was in Miami this time, it warmed my heart to hear stories from other people about those early years.  During the banquet reception, one Dad came to me and told me a story I had long forgotten.  He reminded me of his families first conference when his 2 children were very young.  He said that he wanted to tell me how much comfort it gave him when we met one evening by the side of the pool.  His children were swimming and running all over the place, just as most kids do.  Evidently, I took his son and held him on my lap and calmed him while all along I appeared calm and collected.  It must have been one of my good days, because as I recall, it took me years to learn calm.  He said this still gives him and his wife a feeling that it will all be ok.  He said, “to see you in 1996 (5 years after our diagnosis) with such calm and contentment gave us such peace and hope for our future and the journey we were just embarking on”.  Their son is now an awesome young man that is very productive and happy.  This whole conversation and those like it are the things that keep me motivated to continue to come.  Or, another Mom that told me that “You hold the distinction for being my favorite memory of my first conference.”   It is my hope that I can mentor someone else to be there for those families that are just starting out.  I know I won’t want to do this forever….but for now, I am content.

So, my answer when I’m asked, “Do you still learn something when you come?”  Or, “What do you continue to get out of the conference?”  I can easily say that I always learn about the kindness of others, about the need for mentoring others and I always make new friends.  I have some awesome memories from those conferences and all I can say is….”What happens in Miami, stays in Miami!”  “That’s the life for me….”  In 2014, who knows what my goal will be????


  1. I hated to miss it but glad I got to meet you in Virginia earlier this year:) You help so many and offer hope every day. Thanks for giving your time to the new FX moms. It means so much!

  2. That is exactly what you provide, Cindy......HOPE! I attended both of your conferences this time and learn so much from you on how to live the "daily life". I also attended your St. Louis session and I can honestly say, I still pull those handouts out at times. That was my most memorable conference session thus far! I, like many others am so effected with social anxiety, came close to you so many times at the conference and just couldn't bring myself to say hi and I am your "friend" on facebook. I hope that you know the difference you do make in so many lives. You are such a mentor and are always willing to help others. I can honestly say in this fragile x world, you are one of my hero's!

    1. Dear Natalie-
      I hope I will get to meet you up close and personal very soon! I'm just a Mom like you, and I love to talk about my kids. That's all it is :) Oh, and I love new friends :) There's always room for new friends.

  3. i feel the same way- you were my biggest source of hope at my conference in St. Louis...I am glad and thankful that we can still stay connected through FB. So happy to learn from you and filled with gratitude. You are a gift in the FX community. Thanks for being you!!