closer by the mile

So much has happened since the first walk.
Celia has three little brothers now, all so much like her, just luckier.
Clinical trials have evolved into promising treatment protocols, from Columbus to across the country.

And so much is still the same. Batten disease continues to be a terminal diagnosis.
The energy and optimism in the ongoing fight for a cure is still astonishing.
Sometimes I wonder, though, if our collective hope is a particular kind of insanity or the very definition of being human.

I've learned that grief and loss, although persistent over time, also make space for beautiful things to happen. Like the traditional Battling Batten event. We appreciate the efforts of volunteers and participants more than I will ever be able to convey with letters and punctuation. The future deserves our faith, and we are blessed to be surrounded by so many who believe with us.

Someone described grief as love with no place to go.
Plenty of places to send our extra love today: to everyone who was involved, here and in spirit, know that we love you, and we are grateful.

photo credit: Kristy Grachek