i made it through the weekend of the NHS study. barely. but that is a story for another time. let's just say it was just like every other NHS with a little extra added flair.
it was a special weekend though. the last time we would all be together like that. we started bringing avery in March 2010. i started coordinating it in 2012. now its 2014 and it is over. looking back on 2010 we were so new. so eager to participate and knew about 3 people in the rett family. now, i feel like i have a friendship with nearly every parent. i call many of these people very close friends. and im so glad to be a part of it.
it is hard to explain how easy and comfortable it is to be around this "family". easy really is the best way to explain it. we look out for each other and take care of each other and anticipate each others' kids needs.
i ran myself ragged and celebrated a little too much saturday night. but my family was there for me. amazing support. it is hard for me to fill so many roles all in one weekend-coordinator, regional rep, mom, wife, friend...it is a delicate balance. especially when it feels so easy at the same time. im not making much sense...
but, a lot of good is happening. a lot.
i was asked to be on the board of a new foundation started by colleen who is a good friend and rett mom. she is insanely awesome. and she and i have grown a ton on this journey together. we dont even recognize ourselves anymore. she had a wonderful idea-to help ease the financial burden for families who are willing to participate in rett trials. (do you know how cool it is that I can say trialS-plural? ) the fact that there are two large clinical trials going on right now but they are having trouble filling them really bugged her. so she did something about it.
she started raising money, then decided to start a nonprofit (which is not easy) and then asked me to be on the board. we have had three board meetings all via google hangouts. it feels great. im basically her cheerleader-she calls me and says "i have this idea" and I say "that sounds fabulous"! and then she calls hotels and books rooms and pays for them with money that has been raised and wow. we have helped several families already. currently we are helping families with their hotel costs for the screening visits for the NNZ-2566 trial but we hope to expand to the igf1 trial as well. colleen and her daughter claire are setting the best example. they have just returned from boston for their screening visit. and im so proud of them, so grateful.
speaking of the igf1 trial-a paper was just published showing the success of phase one of that trial. it was shown to be safe and efficacious. its amazing.
last sunday my old friend Tara, ran her first marathon in honor of my goose. and she didnt just run a marathon, she ran an 8K the day before and she was an official rett racer-she has raised $750 so far for IRSF. and she crushed her goal time. and she did it with avery written on her hand. did i mention that i havent seen Tara since maybe 1992? and that it is only through facebook that we even are in touch? amazing.
that same day a badass dad in illiinois finished a 5 day 150 mile run across illinois for his daughter cammy and IRSF. video updates and pictures and everything about all of it made me cry.
and in between all of that we have had some really great times that are not rett related... dinners with new friends, nolans rehearsals, baseball, playgroups, great weather, avery using her device a ton...
dont get me wrong, there is still terrible. screaming, hand mouthing, daily stresses, diapers for a 7 year old, girls in and out of the hospital, feeding tubes etc...
but there is light, lots of it, at the end of this tunnel and we are barreling towards that end. and so far we have made it.