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

Nina & Pinta, in Gallipolis

In November, people are good to each other.

You know that part in the Cynthia Rylant book that goes In November, people are good to each other. 

We are the people.
We are We the people.

I've been trying to think of this election, of the manic and incessant rhetoric, as a passing cloud. I expect fall to bleed color from everything, but not the words of citizens, of neighbors, to draw blood. How our kids talk about and treat each other is directly related to how the adults around them talk about and treat each other. We can make jagged steps forward toward celebrated ideals without making each other feel awful.

We voted over the weekend, turning the clocks forward and hopefully turning the nation, and our neighborhood, forward too.

It's a gift to get a say in the matter, really. May we respond to such extravagant freedom with love and care and sacred responsibility. May we respond, also, to the election results, and more importantly to each other - to neighbors and family and friends - that way too.

In November, people are good to each other. 

Book

A simple word, one syllable, four little letters, three happy boys.

october throws the best parties

puzzling

table talk

In some cultures, the time is sacred.
Sobremesa, for example, in Spain -- loosely translated, it's the after meal, a short time for relaxing, chatting around piles of empty plates and refilled drinks. Time for digesting food, and ideas.

We don't encourage it often enough here, normally sending one child off to practice the piano and another to put together puzzles and the third to help clear plates. And that's assuming Andy's home for dinner in the first place.

Lately, we've tried to postpone the rushed after-dinner routine with our boys.
We want them to learn to honor the fine art of lingering, so we've left the forks and listened to the knock knock jokes. Amid the meal wreckage - crumpled napkins and corn chip crumbs - we've discussed supreme court justices and shoulder surgery, properties of copper and Zelda castles. We want them to know that the topic can go anywhere, that the words will not go beyond our walls.

While we're still trying to discourage things like elbows (and feet) on the table, we are reminded that we belong around it, that we belong to each other. We know the boys will keep eating, and we want them to keep talking, too.