I need another vacation!

We are back home from the 13th International Fragile X Conference in Miami. I was so ridiculously anxious about the trip in advance because I only had one other International Conference experience to refer to which was my first in Detroit. This trip was so, so different.

In Detroit I was a new parent. I had not ever met most of the people at the conference. I’d heard of them, I had exchanged Facebook messages with some but many of them I had not one single clue about. I was, at that time, taking my first tentative steps out into the fragile X community. This time I came as a LINKS leader, I came with hundreds of fragile X parents as friends on Facebook. I knew their kids’ names, where they had vacationed, their pets, their interests and their pet peeves. We had a foundation to build on this time so it was not nearly as hard to reach out and talk to new people.

In Detroit, I attended every possible session, there was not a single moment of my day when I wasn’t supposed to be somewhere taking notes. This time, I went to 3 sessions (4 if you count the 1 I was a presenter for.) I KNOW! I’m at a conference with the world’s leading fragile X experts and what do I do? I hang out at a table in the lobby selling t-shirts and magnets. And I loved nearly every second of it.

I’d be lying if I said there weren’t times when I felt overwhelmed and wanted desperately to crawl into a hole. Then I’d walk away from the crowd for a bit, take a deep breath and just look around. The International Conference is just as much about the people as it is about the information and you need to give yourself time to enjoy the people or you are missing a huge piece of the conference…the human connection.

Let me share a few stories…in Detroit I attended the male panel, it was a group of young men who presented slides describing their schooling and their current lives. They talked about the things that worked for them and helped them learn and grow and they talked about the things that upset them and hold them back. They took questions and answered them. That was a revelation to me.

I approached one of the moms after the session and nearly begged her to tell me how to help my son become like hers…it was the first time I was able to imagine a happy, productive life for my son in a larger community and it’s a gift that literally changed my life. It changed my entire view of living with fragile X. I attended this session again in Miami and it never gets any less powerful. I will never miss this session at any conference.

In Miami, I had more time to enjoy the people. I walked around the exhibitor tables and talked to people. I met a couple of amazing men who live at the Stewart Home School in Kentucky. One of the most terrifying things about fragile X, for me, is what happens when I’m gone? I have spent a lot of nights worrying about this. I won’t lie, thinking about sending my son to live anywhere is torture…thinking about sending him hours and hours away? Not a possibility. Never going to happen. Then I met David and Chuck. I was absolutely in love with them. They told me about the school in such a way that made it very clear that they love it and are thriving there. I even found myself asking how far from an airport they were. Who knows what the future will bring but I can see this as an option at some point. A place for Caleb to ride horses or take yoga or study science and reading…a place to call home.

Also in Miami I had a chance to reconnect with friends. Sure, I could (and do) spend plenty of time skyping, texting or emailing them and even talking on the phone at times but there is something about sitting around a coffee table loaded down with pizza and drunk gummies while we catch up that just can’t be put into words. Having a chance to jump fences and wade knee deep into the ocean under the moon, to pole dance for the Foundation staff, to walk onto the field at the start of a major league baseball game with the most amazing and inspirational people I’ve ever met, to teach my ridiculous “Popcorn Dance” to Tracy (of Tracy & Mouse!!!)…none of this would be possible if I had skipped the conference.

So, while I certainly appreciate the fact that many people go with a plan to take notes until they drop and squeeze every idea and tip possible from the amazing faculty, I don’t want anyone to ever lose sight of the fact that though the “book learning” portion is important…you *can* do that at home. You can read books and scientific journals to your heart’s content…and still miss what makes this truly so amazing in my opinion…it’s the people.


I have a confession.

I am super, super, super excited about Miami. That’s not much of a confession, is it? Bear with me…you should know by now that it takes me a while to get to the point…when I have a point, that is. I think I do have one this time but you’ll have to read to the end to find out1.

Our experience at the Detroit conference in 2010 was so amazing and it brought us fully into the fold of the fragile X community. It was a huge turning point for Eric and I both. I wasn’t as graceful in my transition as Eric but I’ve come around to the point where a whole lot of “will never”s and “over my dead body”s have morphed into realities…the one that hasn’t yet…is now in the realm of “possibly, maybe, OK but give me a little bit longer?”

OK, now we get to the confession part…Detroit was pretty overwhelming for me emotionally and I’m getting really, really, really anxious about Miami. On the one hand, I’m way more prepared for the conference. I know what to expect and I have some amazing IRL friends who will be there this time. I have a place in the community now, I don’t feel like I’m on the edges waiting nervously for someone to say, “Oh, HI! I’m so happy you’re here!”


Writing this blog makes me feel naked. Only a very few people in Detroit were able to connect my actual being to this…this…insanity. I outed myself last year because I decided it was time to own my story. It didn’t seem fair for me to preach connectedness and community and friendship when I was still hiding so much of myself. After so carefully keeping our faces and names and location hidden I said, “What’s the worst that could happen?” and blew the whole thing up. Probably after a couple glasses of Riesling.


Now there’s a whole bunch of new people who I am absolutely, over-the-moon, excited to meet and this time they actually know who I am and that I want to meet them so I’m not a creeper in the corner trying to make eye contact in a non-stalkerish manner while I silently stalk them.  That should make it easier, right? But…it kinda makes it worse.

Now I’m consumed with a whole different set of anxieties…the main one is this…you guys are all so2 cool. I am in awe of your stories, your resilience, your determination to make things happen…I feel unworthy. I feel like you’ll be disappointed when you meet me and see that I really am just a dorky stalker type.

One of my friends (KQ) keeps referring to the “cool kids club” which at first made me sigh and dream of the lost days of my high school popularity (HA! Fellow KHSers will get this joke, as soon as they figure out who the fuck I am) and wish I could be one of them. Then she gave me a “Duh!” look and told me she was talking about my friends…and me. Which made me laugh, then blush, then mumble awkwardly3 and finally…puke…because I am so not a “cool” kid. I’ve never been a cool kid.

I’ve always been the quiet one sitting smack in the middle of the room trying desperately to escape the attention of the cool kids in the back and the teacher at the front. I’m4 shy when meeting new people. I think people maybe forget sometimes that just because I don’t throw up on your shoes5, doesn’t mean I’m not anxious. I’ve been told more than once I’m intimidating, people are afraid to approach me because I’m so aloof but that is alllllll anxiety. I don’t bite, I won’t be mean to you, I’m sure that I want to meet you6 even.

I remember in Detroit in 2010 I really, really, really wanted to meet Kristie (Life with My X Men, Kristie). The final night of the conference, at the banquet, I finally saw her. It nearly killed me to approach her and introduce myself and after getting a photo with her I ran7 back to my table and sat there staring at my husband with huge eyes, shaking. It was that hard.

I know I promised you a point but I don’t really remember what my point was going to be anymore except maybe that I’m way more like you than you probably expect. We probably have very similar insecurities and very similar dialogs running in our heads8. I am going to try to be less awkward and be more…crap…I don’t even know what my options are though drunk is sounding pretty good right now *sigh*


  1. TEASER! []
  2. FUCKING []
  3. I do everything awkwardly, you will see. []
  4. very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very, very []
  5. I have not done this since my 21st birthday, I swear []
  6. I typed meat and did not catch it until the 3rd review. Let us be clear, I will not meat you, that is another promise! []
  7. awkwardly []
  8. That is meant to be comforting, BTW, not scary. []