Busy, Busy, and Parties Galore

September 22, 2010 by Victoria Strong
We are busy - with a capital B. It is all wonderful, fabulous, really super positive stuff. But, we've got irons in just about every fire and it is keeping us on our toes.

In SMA news...there is, of course, the Helmet of Hope contest (please, please, please keep voting! Vote every day. $20,000 for SMA research!). We have been planning and just launched our annual "Golf For A Cure" golf tournament (it's going to be AWESOME and you want to be there!). We are working with many amazing SMA families around the country in our "$200K for SMA" fundraising campaign to collectively raise $200,000 for promising gene therapy research (The goal is getting up there with so many people working so, so hard!). Our incredible friends are organizing creative events throughout the fall and throughout the country (Hope you can go to one). We are working with other nonprofits and continually contacting legislators to help get the SMA Treatment Acceleration Act passed. And we are constantly trying to think of fresh innovative ways to spread the SMA message and raise much needed funding. Oh and we talked to the New York Times, Consumer Reports, and CNN this week about Health Care reform (hoping SMA is talked about as much as we talked about it!).

And in Miss Gwendolyn's life...we are preparing for preschool -- YES, preschool! -- which has meant meetings and more meetings and phone calls and more phone calls. It looks like we are heading in a great, exciting direction, but we have, yes, more meetings about it. (Hoping for good news on this coming soon.) We go visit "Little Star," Gwendolyn's favorite mini-horse, once a week and they are having a ball together. Gwendolyn's power chair is in "process." We're starting to look for a full-size handicap accessible van to carry all of Gwendolyn's gear. Oh, and there is also the planning of a certain special someone's 3rd birthday at....wait for it...wait for it.....DISNEYLAND for FIVE fun, adventure, princess filled days!!! We are so excited for Miss All About Princesses to get to meet a few real princesses in person, see a castle, and just be in sensory overload. It's all going to be awesome!!

For Gwendolyn, the fall is also birthday season...not just hers, but ALL of her friends. And this means parties, parties and more parties and Gwendolyn is loving every second! And so are we!!

Last weekend we attended Luke's "Pirate Party" -- Arrrr! Costumes were required, but Gwendolyn refused to be a pirate...well more she insisted on being a mermaid. And, well, that made perfect sense to me -- who else serenades the pirates? So we got all her extra special mermaid gear on and headed over to Luke's fun party at the park. Gwendolyn loved the pinata, decorating her sword, seeing all her friends, and getting her face painted. And, of course, being a mermaid!

We also got to go to Mason and Nick's party at My Gym before we headed off to Stanford. Gwendolyn had a ball. She had never been to a gym and was so up for any and all of the games: hide n' seek, chase the fox, basketball, trampoline, run around the circle, stretch your body, you name it. She just loved getting to be part of everything and our awesome friends made sure she was always included. And there was even a story time right before cake...and right before she fell fast asleep.

This Saturday we went to Bella's "Pony Party" and, yes, a REAL pony was in attendance! Gwendolyn was the first brave one to pet Eggnog, showing all her friends how to do it. She then got her face painted with a special picture of Little Star. She got to participate in another pinata, but this was the string type and fancy jewelry fell out of it. And...she got a turn to ride on Eggnog's back!!! I know...Whoa!!! Our little cowgirl was in hog heaven!

On Sunday it was Owen's special party -- a Zoo theme at the pool! Gwendolyn immediately spied the amazing animal decorated cupcakes and selected a giraffe hat to wear. She then sat with Daddy splashing her feet in the pool with her friends. And clutched her animal goodie bag all the way home.

And on Sunday evening it was Laurie's 35th birthday -- not 3rd -- 35th! A big girl party! No theme for this one, except "SURPRISE!" and Gwendolyn and all the kids found that highly hysterical. We all met at Arnoldi's, played some bocce ball, shared balloons, and soaked in the warmth of friendship.

We love our friends...really love our friends. With everything we have going on it is all possible because of so, so, so much support and so, so, so many unbelievably special, extraordinary people who are in our lives. We. Love. You. All. smile

Talk About It

Love seeing all the pictures.All the beautiful faces of your friends and community that love you so. And so love seeing Gwendolyn busy and happy and soaking in the fun with all her buddies. Disneyland?5 days?What a blast .... and all those princess' not to mention a most beautiful mermaid.What n incredible time you all will have. And finally,the big 3rd birthday.What an incredible celebration that will be. Much love to you all.
Posted by Zoey's mom on 2010-09-22 09:51:54
Wow, Gwendolyn! Your schedule exhausts us! But I guess that comes with being a princess. Rudy thinks it's cool that you can ride a horse to boot! Rolf and Trish
Posted by Rolf on 2010-09-22 10:59:44
Yay! Glad she had so much fun and has sooo many friends there as well as here. Grats on Disneyland she will have oh sooo much fun! Sending healing energy to you Gwen and BIIIG hugs too. We love you and are so glad to see all the fun you're having. ~Moon & Weet
Posted by Moon on 2010-09-22 12:38:21
I am tired just reading about your weekend. I am so excited to hear you are going to Disneyland!!! I love Disneyland as does my husband. Last time we were there he surprised me with dinner with the Princesses, as I love them all too. I can't wait to see all the pictures. (we always do Disneyland or World in October because it's pretty empty in October.) --Mari
Posted by Mari aka "Thorney" on 2010-09-22 18:12:29
What an amazing time it looks like Gwendolyn has been having as of late. We look forward to hearing about all the exciting plans that lie ahead, as they unravel.
Posted by Colin C. on 2010-09-22 19:44:41
Whew!! I'm exhausted just reading about Gwendolyn's social life!! It's so fabulous to see her doing everything a 3-year old should be doing, and with the prospect of preschool and Disneyland - only more wonderful experiences to come!! I can't wait to see her eyes when she spies Sleeping Beauty's castle! A surprise package from Sheri coming soon....
Posted by Sheri on 2010-09-22 22:31:21
Oh I LOVE all of the pictures! The more pics of Miss Gwendolyn we get to see the better! That picture of her with Little Star painted on her cheek is priceless!
Posted by Misty on 2010-09-22 22:35:25
We sooo love the picture of Gwendolyn riding the pony. We wanted to do that at the fair but were too nervous. Next fair is in October and now I've got the courage to try it. Looks like she has been having a blast. Such the social butterfly. Yay!!! for Disneyland. She is going to feel right at home being the princess she is. P.S. I need you're manual on staying organized and you're recipe for energy! LOL Keep up the good work guys!
Posted by Jennifer Calafiore on 2010-09-23 08:45:26
Ok, Jonas and I are jumping up and down for you and DISNEYLAND!!!! Wahoo!! You guys are going to have such a good time and make some great memories! I love to talk about Disneyland, so any questions, ask away! It makes me so happy to see Gwendolyn having such a good time. Hugs to you!
Posted by Lindsey Coleman on 2010-09-24 12:33:09

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