Clouds, May 2010

Clouds, May 2010

Friday, July 25, 2014

let's meet

I am not very friendly unless I know you (which really works wonders when getting to know someone), I am a homebody who generally dislikes traveling, & I have anxiety about nearly everything Hayden-related.

But take my advice, anyway: if you
have never been to a NFXF Conference before, you should go.

It took me about five years to warm up to these once-strangers that I did not want to have anything in common with. I first heard of fragile x in November of 2006. I first learned of its community some time in early 2007. I attended a Conference of said community in 2008. That trip kicked off a lovely, long process of grieving... & so by the time of the next Conference in 2010 when I was still pretty much stuck in the same place, despite my family's encouragement, I was adamant about not attending.

The next two years I somehow very slowly took a complete 180. Not only did we attend the 2012 Conference, I actually enjoyed it.

Well last week on Tuesday, July 15th I boarded a plane headed for California.
Aside from an insane amount of preparations, a little delay in take-off, & noticeable turbulence over some western mountain region... the flight was luckily otherwise uneventful.

We landed, I collected my luggage which thankfully arrived in baggage claim pretty quickly, & then I headed outside to find a ride to the hotel. I was incredibly relieved to see some familiar faces when I approached the lane of waiting taxis & hotel shuttles. At least I knew I would end up in the right place if I followed them (like I said-- don't travel much)!

I remembered one person from CSN training back in October in St Louis (I'll explain*), & another family I recognized from facebook. I introduced myself to the guy I recognized from St Louis & joined him & another couple in the shuttle. When they told me their names I knew I had heard of them as well.  

We were on our way to meet up with hundreds of others-- all in California for the same reason: The 14th International Fragile X Conference, hosted by The National Fragile X Foundation (NFXF). For me this was International Conference #3, however, it was my first time attending solo... & my first one as a CSN Co-Leader. (Translation: Community Support Network of the NFXF*, which I am a parent volunteer for, as Co-Leader of the New Jersey CSN.)

These Conferences by the way-- which occur once every two years (they used to be once every four)-- cover everything. Whether you're a parent or a physician, a newly diagnosed or long-time member of the community, a person with fragile x, a person without fragile x, or a carrier of fragile x... there is truly something for everyone. From family-friendly conference sessions, to very clinical sessions for professionals, & anything in between-- it's all there under one hotel roof (the location of which changes with every International Conference).

Literally upon arrival at the hotel on Tuesday, everything from that point felt like someone was holding down the fast-forward button for the rest of the week-- friends, forums, food, repeat...

I was even lucky enough to squeeze in a visit with family, because I happen to have cousins in Orange County. And I must mention that one of them had me upgraded to first class for the flight home which was a beyond-wonderful experience in itself... & one that I will not soon forget

But overall my California trip was jam-packed with way too many highlights to even begin to recap in a single blog post. And as much as I would love to return to this at a later date, & relive every activity of every day, I am simultaneously entirely too tired to log it all (which I so wanted to do while I was there, but the little amount of time I actually spent in the hotel room was to sleep or get dressed).  At the end of each day, I barely sat at the computer long enough to upload the day's pictures.

Each day was more awesome than the one before... to the point that, if there was suddenly a cure for fragile x... I would REALLY miss these conferences!

Don't get me wrong... I certainly hope that me & my child live to see a cure... but as the saying goes (I'm paraphrasing) this is seriously the best damn club that you would never wish to be a part of.

Although I can not promise you first class on your flight home, I can say that thanks to the incredible members of this unique fragile x community-- (as I mentioned in my speech for a dear friend last week--) we have helped one another to see something pretty unbelievable:
What started out as a diagnosis will eventually turn into confidence.

Do you know what the difference is between "conference" & "confidence"?

Two letters.

So to anyone in the fragile x community who is unfamiliar with both of those words-- you have two years to prepare...

See you at the 2016 NFXF conference in San Antonio, Texas...

(pm me if you want to know a great conversational ice breaker about polar bears...


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