I’m the first to admit that I don’t know
anything everything about fragile x but sometimes I start to slide a little bit towards complacency and think I know enough about this beast we live with and sometimes love ((And, for the record, the beast is not Monkey but FXS!)). Honestly, after 5 years and 8 months ((but who is counting?)) of living with the diagnosis, 4 years and 9 months of advocating for Monkey within the school system, 6 conferences, 759 blog posts, 5 two-day visits to the fragile x clinic at Children’s Hospital, dozens of separate doctor visits with potty training specialists, psychologists and developmental pediatricians, every book I can get my hands on and countless hours spent online researching…I’m familiar with it, you know? Sometimes I let that familiarity lull me into thinking I’m all that, a bag of chips and a slice of pumpkin cheesecake. Given my ridiculously high estimation of myself why, why, why waste a weekend of free babysitting for another damned conference? Why??
The short answer is, there is always something to learn. If it isn’t from the speakers’ presentations it will be from another parent, a conversation with a provider in the hall or an exhibitor. And if you are very lucky, you learn something new from all of those sources. Me? I’m very lucky.
I’ve talked about the one day conferences that the Fragile X Society of Connecticut puts on before. They do an outstanding job every year in finding topics that apply to wide segments of the FXS population. This is not an easy thing to do! Every single one of us is coming to a conference with our own unique needs and knowledge based on our oh-so-unique children and their varying life stages. We have unique expectations of the hotel, the conference facilities, the presenters, the hosts and even the food served at lunch. That’s an awful lot of expectations to meet and they do it so very well! Keep this in mind for next year, this is WORTH driving hours in crappy traffic. We do it every year and every year I question it when I’m in Hartford and the nutty Connecticut drivers are swerving back and forth between lanes at 180 miles/hour and I’m feeling queasy because, holy cr*p, have you driven through Hartford before??? It’s like a video game mixed with a roller coaster. Eep! And every year, the moment we leave the conference…and usually sooner…I’m talking to Eric about the fact that I can’t wait to see what they do next year. IT IS WORTH IT.
I present, our conference, in pictures.
This is what greeted us when we finally arrived.
Eric reserved two beds because…I’m not sure *but* I was very happy because I took that second comforter and used it. I ended up with 4 layers of down comforter before the night was out and that’s the best sleep I’ve ever had in a hotel *bliss*
As soon as the bags were dropped it was time for….
Of course. We were so hungry that we didn’t speak and/or breath again until this little beauty showed up *pumpkin cheesecake!!* It was just as beautiful when we were done with it 3.1 seconds later!
Then it was back to the room and some seriously needed zzz’s!
The next morning I had a bit of a pout fest, Eric was unsympathetic. I asked him if he’d never had any regrets before and he said, “Not about something like this…”
I didn’t think to smell them until AFTER I was done showering and then I wanted to cry because they smelled soooo good. So I stole them.
Then it was on to the conference. When we checked in I was excited to make the VIP list for the SECOND year in a row. Sure, everyone makes the registration list but I made Jody’s ((Andy and Tammy Selinger’s daughter)) list! And…rated one of these…
Fine, Eric did too…
But I got hearts on my envelope and he rated a flower, I’m pretty sure this means I win.
Then it was on to the SERIOUS stuff…
See what I meant when I said there’s always something to learn?? Those are some seriously awesome topics by seriously smart presenters. I missed one entire session and still my head was so full that it shut down by the end of the day. Really, ask Eric what happened when he tried to get me to pick a dinner option ((Hint, MELTDOWN!!!)).
And this one is for my Eastern Mass ladies…SQUEE!
This is what we did ALL DAMNED DAY! We had so much fun!
Enough talky, I need to go pick up my Monkey in Maine. I’ve missed him so.