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Tuesday, October 15, 2013

the most stressful, tiring and rewarding weekend of my life (aka thank you).

this is the fourth year i have chaired the Strollathon. it is also the fourth year since we received the diagnosis (coming up in november). it is the second year i have chaired the Strollathon AND helped to coordinate the natural history study that katie's clinic hosts on the same weekend.  last year i was seeing spots by the end of the weekend.  this year i was all smiles.  the difference was help.  the help was always there, really-but i just never asked for as much as i should.  this year i did, and what a difference.  this could get long...

but, it blows me away that people actually choose to help out at these things.  they make signs, they bake, they spend time, they hang posters, they dress up in fun outfits for the kids, they paint faces, they smile and just help. i need to thank some people.

first, the group i have been so lucky to partner with since the beginning is the National Charity League.  I contacted the oakland/piedmont chapter back in 2010 and asked for their help with my first event. they showed up ready to work and i had no idea what to tell them!  that is how unorganized i was.  one of the moms, Kim, sat next to me at registration and literally saved my life. she got me organized and on track and at the end said to me "this has been such a wonderful event, can we come back every year?".
and they have. and they have saved me each time.
since that first year we have moved locations and since that year whenever i show up i am greeted by my NCL people. ready to go. and every year i dont quite know what to tell them and every year they just make it happen. and each year they do more. this year they did so much that i barely had anything to do but show up. i cannot express my gratitude enough.

another group of major helpers are my friend Sarah, her family and especially her dad. i met Sarah in 2007 when i signed up for baby boot camp.  sarah was our fearless leader and she watched avery slowly struggle to meet milestones and when she was diagnosed she asked what she could do.  i will never forget the moment i was at the gym and i read her email saying "we want to organize a walk or a run for avery" i burst into tears. it was literally that email that got me into chairing the strollathon. and she has been there every year-with her husband and three cute kids in their strollathon shirts.  her dad too, with tables and chairs from his church. ready and willing to help.  always. her dad even helped me organize a family picnic one spring and brought dozens of helpers with donated food.  it was unreal. and they just keep coming back. sarah even warmed us up this year.  again, so thankful.

my photographer and non stop dedicated clinic volunteer Debbie who blows me away every time i see her is also a huge piece of the puzzle. she works her butt off.  she bought a ladder just for getting good pics at the stroll. i mean. 

this year i roped in a mom new to the area, but not new to rett.  Kelly offered to take over the raffle and she ran with it.  i was so impressed with what she pulled together-and how organized it was and how gorgeous.  she is one amazing lady and i owe her at least a dinner and drinks for sure. she added a huge part to the stroll this year and i know next year will try to outdo herself-although im not sure that is possible.

our sponsors-it isnt easy to just rip a check out of that checkbook for 1000 or 500 bucks but you did it. and sure you get on our cute t shirts and our banners but you dont do it for that and for that i thank you.  you are making a huge difference in my daughters life.  in a lots of daughters' lives. zimmer, parkers crazy cookies, bogey girl gold, wellington foods, capes for heroes, L&L glass, clif bar and Convaid-thank you.

thanks also must go to Paige and Jesse for everything i do that is rett related-paige was my first rett contact after the diagnosis who was 10 minutes away and happened to do family support for IRSF.  they started katies clinic where I now work and Paige was the one who said to me in 2009 "want to help with a strollathon?".  they are always there in the background quietly helping with warm smiles on their faces and just get things done like no one else. they do so much and ask for nothing in return. damn i owe them a few dinners and drinks.

the rett families that make the trek. from everywhere. you show up, you fundraise. you make shirts. you support each other.  what you do by showing up is so huge. because if you are a new family there is a veteran family there to help, and if you are a veteran family-there is a new family looking up to you.

our friends and family that show up every year, team little goose--i cant even type that without crying.  it seems like a small thing, im sure to them. but when i have that mic in my hand and im nervous as hell to make some sort of speech and i look out and see them-everywhere i look? it takes my breath away. it truly does. you guys are there to support, to buy raffle tickets, to donate. but the thing that means the most is your presence. truly.  and i love it. it means so much to see your faces there, pulling wagons full of water, wearing your orange hat, pushing strollers and carrying newborns. i had so many first timers this year and so many returns. each of you mean just as much to us whether its your first or fourth.

the crazy part is that the weekend looms over me as it approaches; it involves clinic on Friday (typically we see 4 patients and on this clinic day we usually see 6-7!) from 9-7, then study appts on saturday from 6:45am till 6pm plus and evening program... then sunday 7am, Avery's appointment and then off to the stroll.  it is a lot. but that saturday morning when i wake up im energized, then i show up at CHRCO and see our families there ready to be seen and paige shows up with bagels and our volunteers show up and suddenly im super energized and then just like that-it is over. it goes by so fast and it is all so fantastic. so fantastic.

this year i thought: there is no way i would be doing something this meaningful if it wasnt for avery and rett. no way. i would be sitting on the couch watching football not realizing how lucky i was.  i said it outloud this year-this has been a blessing-and it is still weird for me to say that. but it has changed our lives and the lives around us for the better.  so weird, but so true.

1 comment:

mj said...

You amaze me. Rett is my life and I sit on the couch and watch football. Hmmm...