Monday, April 19, 2010

Prader-Willi Walk-Along

Ok, so I've been pretty absent from the blog-o-sphere.  I started a post a few days ago about being home last week with Oscar during his spring break.  I wanted to complain about all the medical crap we took care of and how it led to more tests and questions for me but thankfully resulted in less stuff for him. (glasses: optional, scoliosis brace: no).  I was going to go on and on about how Oscar's spirits soared all week, even when he was struggling with horrendous disfluency and fighting for every word, while mine just plummeted, tired of the doctors, tired of the stuttering, and how it made me feel even worse to be the one complaining. But then I cut my hand with a butcher knife trying to remove an avocado pit and when I got to the ER a family was in distress over the attempted suicide of a loved one and, well, I finally got some perspective.

Instead of that post, I steered my efforts toward our annual Prader-Willi Walk-Along fundraising letter.  The walk is this Sunday and we're gearing up.  Boxes and boxes of sky blue t-shirts sit in our basement, along with thirty some informative signs and their accompanying stakes which we place along the mile plus walk route that looks out over the San Francisco Bay. We'll drag out our huge white tent to use as the registration booth and print out several pages of labels with Oscar's picture to be worn by friends and family who join us for the walk.  I'll make lunches for our family and our Southern California PWCF leaders who always come north to help our local support group pull off this event.  We'll help set-up, we'll walk, we'll sit and enjoy the band, we'll talk with other families while the kids play picnic games and get their faces painted.  And at the end of the day we'll feel grateful for who Oscar is, for our friends and family who support us from near and far, and for the wonderful people we've met on this unexpected and admittedly unwelcome journey. It'll be good.