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).
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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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