Tuesday, June 28, 2011

Our Lives: The Post Philly Era

     We've had a few days at home from our conference in Philadelphia now to return to our regular routine and to internalize everything we've learned at the numerous workshops we participated in. I'm having a difficult time deciding how I feel about our week there.

     The nine hour drive there went surprisingly well. We left at 4am thinking the kids would go back to sleep and nap periodically. Turns out that was a very (foolish?) optimistic plan. They were awake the entire time...or so I was told- I'm way smarter than the kids and went back to sleep about 15 meters away from our house.

     We got a better rate at another hotel (half price) so we weren't staying at the hotel where the actual conference was staying. We were about 15 minutes away a.k.a 75 minutes with traffic. So we won't be doing that next time. We did have a kick ass pool though...

     I don't know what we were thinking; we had everyone in the same room- Nick, myself, Noelle, and Dryden. Noelle decided that Thursday night was an inappropriate night to sleep and was up all night. Therefore, so was I. I kicked everyone out of the room at 8am for breakfast and went back to bed until noon. So that shot almost an entire day of workshops for me.

     The workshops themselves (the ones I was able to attend) were fine. I was disappointed that the few things I really wanted more info on (ie: sleep, CVI, how to attain funding for therapies and programming) were not touched upon at all. I loved the potty training one. I wish I had been able to leave with more information.

     We were super fortunate that Nick's parents came with us to help with the kids; the entire experience would have been (terrible?) without their help. They have no choice but to come next time too...or we are leaving the kids at home (with them lol.)

     I also didn't get an awful lot of time to socialize with other parents. The workshops were from 9 am until 6 pmish and then by the time we went for supper, and a swim and got the kids ready for bed...well that was my night. I stayed in the room with the kids every night and Nick went to the bar and drank and hung out until last call. (Did that come across as bitter and resentful? Hmmm...)

     The ride home was somehow two hours longer- what the hell?- and not nearly as smooth as the ride there. We watched about 349 hours of "Toy Story" and navigated our way through countless tantrums (ever try to throw a temper tantrum while strapped into a car seat? Just pisses the kid off even more and extends the period of misery for everyone in the car.)

     Although I have mixed feelings about this conference, I do feel as though it has lit a fire within me to do more; to push harder for Noelle and to be less complacent; to fundraise more for the lesser funded therapies and programming. [Noelle waited two years on a waiting list to see a speech therapist. I now realize that I should have been outraged and furious. No one should have to wait that long for such a vital developmental tool.] Both Nick and I are excited to become more involved with the Dup 15q Alliance and to take a more active role in the next conference.

     All in all, it was a worthwhile experience and worth the trouble and frustration and we will eagerly do it all over again in two years. We know what worked for us this time and what didn't and are now that much more prepared.

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