I didn’t know how to tell her. I knew Jessie would be devastated. How do you share with an eight-year-old girl that another one of her friends has died? Gina Rugari, a fourteen-year-old girl from Ohio with Krabbe Disease, had clearly carved out a very special place in Jessie’s heart. Jessie would…

The pinnacle pursuit of our culture is to be happy. The meaning of life is frequently described as achieving a state of happiness and oftentimes the parental role has been reduced to a means of simply guiding our children into happiness. The pursuit of happiness is even written into the fabric of American government as an inalienable right to be protected. We’re a people who want to be happy. But what does it mean to be happy? And what happens when life’s circumstances are anything but happy? …

I’ve heard people describe how much days like these can be a blur with an existential feeling of hovering above the experience rather than being central to it—I encountered this at our son’s memorial service; much of the day felt illusory and impossible to fathom, as if reality had been suspended. But there is something etched in my memory…

I never get used to it…that moment when death, the death of another leukodystrophy child, stops me cold in my tracks. Even as the world around me keeps spinning — little girls running through my home, laundry churning in the machine and neighbors talking outside my door — I suddenly find myself…