then plus now

It feels suddenly more real, the five of us, with the addition of Hank in a high chair.  We make a pentagon around the table.

Tolliver, interested in numbers, has recently been making up math problems like three plus five and using his fingers to solve.  Eight!
Successful and proud, he tried another: fifteen plus seventy two. But when that one proved too tricky, Tollie calmly said I guess I’m just not a knower of everything yet.

None of us are knowers of everything, I explained.

When Celia was born, we imagined her life as an endless parade of perfect tomorrows.

The August she was five months old, we were on Anna Maria Island with friends. There, Celia and Ellie (born just one day apart) were old enough to try baby cereal. We videoed the event and immediately gave the girls, who were covered in bland, gray paste, baths afterward. That was nine years ago, but I was reminded of it when I watched one of those little girls, now so grown, feed Hank a few of his own first bites along the shores of Lake Michigan last week.

Our family will forever be adjusting to the odd sense of subtraction that Batten disease brings.
We will also forever be fighting for a cure.

Help us help scientists become better knowers about Batten.

Register online for the November 13th Battling Batten 5K Run & Family Walk at Race Penguin.
Or, visit the Battling Batten table at this Saturday's Grandview Hop.