Over the weekend Bill flew out to Virginia to attend the
FightSMA board meeting. We have been working with this SMA organization for nearly a year and a half through our
PetitionToCureSMA.com campaign and they are enormous advocates for the SMA Treatment Acceleration Act. Thanks to their tireless energy, perseverance, and constant meetings on Capitol Hill (armed with the petition data), we are truly hopeful this important bill will be passed this year! (Psssssst, please sign the
PetitionToCureSMA.com if you haven't already!) It is an honor to be working even more closely with them now that Bill was invited to be a member of their Board of Directors. But, as much as he wanted to go, this was the first time Bill has been that far away from us since Gwendolyn's diagnosis. We were all nervous -- especially Bill. It was a big step for all of us, but a good one.
While Daddy was away, Gwendolyn and I were busy bees. On Friday, I drove to Marina's house for a play date, which meant driving with Gwendolyn on the freeway for the first time by myself! On Saturday morning we went to
Reese's birthday party, got to hang out with friends, play music, eat brightly colored cupcakes, and sing "Happy Birthday" to a very serious birthday girl! And on Sunday, Daalia came over for some morning coffee talk. Oh, and we practiced the power chair a lot! It was a fabulous weekend and thanks to the help of two wonderful ladies (E & D), I knew we'd be okay.
The second Bill walked through the door, Gwendolyn wanted nothing but Daddy hugs (Mom was chopped liver!), but I don't blame her -- he's pretty great!
The second Bill walked through the door, Gwendolyn wanted nothing but Daddy hugs (Mom was chopped liver!), but I don't blame her -- he's pretty great!
8 comments:
Victoria, I think all three of you are pretty great
I agree with Roy. :)
What fun! I am working up my courage to take Dakin in the car by myself...to the swings or whatever. I'm glad you guys did it successfully and had a great weekend!
wow....what a fun filled weekend! Victoria you never cease to amaze me! Your strength and determination are boundless! and Bill the board of directors are lucky to have you!
Be well....
Lisa :)
What an incredible weekend of important steps! I am so glad Bill was asked to be on the Board of Directors, I know he will be a great asset to them. Victoria, your energy, determination and sheer joy in all you do with and for Gwendolyn are such an inspiration...all 3 of you are!
Em
Victoria, You did amazing!! What an honor for Bill, and your family, to be even more connected to the SMA movement--if that's possible, you two are so important to this group already. Bravo to you both!
So glad to hear that Gwendolyn is doing well in her power chair and enjoying it. I can't wait to see pictures.
As a sidenote, we are in the process of packing to move to Redondo Beach, WA--beautiful small community right on Puget Sound with sweeping views of the Sound from all our windows! If you don't hear from me for a days on end, know I am thinking of you and always Gwendolyn is in my prayers, as are you both.
--Mari
Victoria U did a really good job while daddy was on his important 'journey' Wow, and I know GEE was so busy (soooo busy) and had a fun-filled weekend
Look @ her pretty party dress and the yummy cup-cakes U are TOO much to have done it all I am so very proud of U As I am extremely proud of my FAV nephew Bill (he is my only nephew so hence my FAV) Well, it would not be 'Me' if I did not say my famous 'Wagons Ho' But in your case I should say 'Wagons Slow Down' tee hee Hugs for GEE!!
The cupcakes sure did look pretty! I am glad you and Miss Gwendolyn had a great time. As for being Chopped Liver LOL that happens to me everyday, but daddy does travel A LOT with the military and they really enjoy the time daddy is home.
Praying for the BILL to pass this year!!
That is a huge 'first' weekend!
You three have done amazing things in the SMA family, and while we hate to see anyone else 'join' the group, we're thrilled you're a part of it!
'Lucy'
Post a Comment