Busy, Busy, Busy…

August 27, 2009 by Victoria We are busy...busy, busy, busy. On top of new casts, teething molars, entering into fall and the worry of the flu and the dreaded swine flu and what that means for Gwendolyn's life, we are both working around the clock and are pouring our hearts into Unite For The Cure. In fact, we are starting to feel down right run down. But, Unite For The Cure feels like the most significant thing we have ever been involved in and that keeps us going. We believe in the promise of Dr. Keirstead's groundbreaking research. And we feel a sense of responsibility and a sense of urgency to help and be there for the other Unite families. We enjoy learning about their endeavors, encouraging their efforts, and hearing of their enthusiasm for the Unite program. We are motivated by the We are in this together feeling! So many families have thanked us for starting Unite For The Cure and given us enormous compliments about how important being part of this program is to them. All unnecessary, but it makes me feel enormously proud...and all very emotional. To hear others say we go above and beyond feels good, but most of the time I feel I am just doing my best. And many days the best I am able to do is nowhere near good enough because my true BEST would be to cure this damn disease and save my daughter's life. I know I can't do that, which can be torturous at times. I may not be able to cure SMA, but at least I know I am working my bum off to make sure the scientists who are working toward the cure have the resources they need. And that feels good and important...and necessary.

In other news...

Gwendolyn had her first bath with her casts. It wasn't the fun soak she usually likes, but a bath chair and trash bags did the trick to keep her casts nice and dry. Good job, Mommy! (said, while patting my own back ).

Gwendolyn has managed the casts pretty well, but last night she woke up throughout the night moaning. We gave her alternating Tylenol and Motrin, but she was still uncomfortable. It doesn't help that we are having a sudden heat wave and it is a hundred million degrees in the house. And the poor sweety is also cutting her molars and a few more front teeth. Yet, through it all, she is still quick to smile. I think this shirt says it all!

And the fun news is we are very excited that we have a lot of dear, dear friends in town right now for a wedding. Here is Uncle Matt from Boston (Bill's college roommate and one of his best friends), bringing a Red Sox T-shirt and a "Princess" Boston Red Sox hat for Gwendolyn, which she immediately loved! (New York, don't be mad ) Tomorrow even more friends arrive and we have a fun-filled, action packed weekend. We will take lots of pictures. You aren't going to believe how cute Gwendolyn's outfits are for the festivities!!!

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