“I wish I didn’t have special muscles,” Brendan said to me as I struggled to pull both him and his younger brother through the Farmers Market, with…… Read more ““I wish I didn’t have special muscles…””
I like this photo, because it was taken in a good moment. I can’t even say, a good day, because our ebbing and flowing these days does…… Read more ““Coping” as a couple”
Duchenne. The first time I ever heard the word was when Kat, sitting next to me on the couch, covered her mouth and gasped. “Oh no,” I…… Read more “…And then we discovered our son has a fatal genetic disease”
SON You are small, but you contain worlds. You are helpless, yet you shine with the power of life itself. You cannot contain your own power. When… Read more "Son, you are small but you contain worlds"
Having moved to Oshkosh now, some six weeks ago, I have set some intentions that I hope will move towards change. I don’t like to tell people…… Read more “Why I don’t want to tell you about my intentions”