Wednesday, March 5, 2014

so much

so so much is going on.
this weekend will be the 5th natural history study that i have coordinated.
every 6 months for the past 8 or 9 years amazing teams of researchers have flown to oakland (and several other sites over the us) to collect data from girls with rett and their families.
this means a schedule over two days of about 60-75 families with three different research teams, lunches and tables and reservations, rooms blocks, buffets, slideshows, microphones, coolers, fliers, nametags....the list goes on and on.  plus clinic on friday.
it also means ill be working pretty much all weekend-going going going-all weekend. answering questions, putting out fires, running around in circles.
im feeling pretty relaxed about it now that this is my 5th time.  but then i feel like i must be missing something if i feel so relaxed. but it always works out. tomorrow ill scramble around my office getting everything done and ill stress and ill worry and it will all work out fine.

nolan has started baseball and also rehearsals for a little variety show group called Star Quest.  he has rehearsals every sunday and the show will be the 26th and 27th of april.  he is just in the background cast and who knows if he will really take to it or not-but it is fun and im super excited to see the show.  i saw some of the first rehearsal and these kids who have been doing it forever are talented!

baseball is a big deal. Red is helping coach Nolan's team (red sox!) which he loves. but we just got the game schedule and there are 22 games! some weekends its friday night, sat and sun!  this is our first foray into extra curricular activities and wow, it is intense.

but for now this weekend is all i can think about.  how awesome it will be to see so many rett families all under one roof-all making a difference, all making history.  im still in awe of the research teams and how lucky i am that i get to email them and ask them things and help them out. it will also be a little sad as this is the last time this will happen in oakland.  it is many families' only chance to be around so many other families that are just like them. a place where no one is annoyed by your child's noises or quirks.  a place where other parents have just as quick of reflexes as you do when your kid goes for the front door. i know by sunday ill be toast.  but i also know that i get to go to dinner with the research teams and thank them for all they have done-for dedicating their careers to our girls, my girl, our family.  to thank them for it all-so so much.