Walk and Awe

It is still rather hard for me to understand, when I pause to consider it.
We live in a world with sunsets and giant sequoias, chardonnay and dark chocolate and birdsong in the spring, waterfalls and kitten whiskers and the scent of jasmine, and yet there are things -- afterthoughts or oversights, I don't know -- like terminal childhood disorders.  Things like Batten.
Humans are capable of space travel and cloning sheep, but four year old kids can die of disease.

One of the event organizers referenced Margaret Mead's words this week, and they seem so apropos:  "Never doubt that a small group of thoughtful people can change the world.  Indeed, it is the only thing that ever has."

Except the group that gathered over the weekend didn't feel very small.
We are in awe, still, at how many people showed up at great inconvenience to themselves -- they could’ve slept in, could’ve gone for pancakes instead, but came to support the research that is so important to us.  We are humbled by the willingness of so many to sacrifice time and money, to step into the muck and to climb the mountain of hope.  We are amazed that there are people who will invest in getting to know a little girl they never met.
You all keep us from wallowing in grief and give us more reason to be glad we are alive in this world.

Andy talked about the promising new clinical trial at Nationwide Childrens Hospital, the first of its kind in our country. And he thanked everyone for coming.  We really can't ever say that enough.

Nursing students, whom Andys only known since August, surprised him by showing up on Sunday!

Just a small sampling of local school age children, several of whom have a classmate with Batten, which must make something like a terminal diagnosis feel far less abstract.  

Happy birthday, Grandma Jan!

(find Buttercream Bakery on Facebook)

These three give a whole new meaning to turning compassionate awareness into action.

There are hundreds more wonderful photographs on the Battling Batten Facebook page.  Special thanks to Mark Burch and Karen Raver for framing so many great shots.