I regularly ask Jessie throughout the day, “Can I have a kiss?” to which she often responds by shaking her head, indicating no.  Periodically, my request yields a precious smack of her lips, though she makes no effort to actually deposit her kiss on me. However, the other morning, while we were playing together in

In the midst of my mourning, I have been pondering how grief was experienced in North America a couple centuries ago.  It was very different. A death in the family entailed long periods of mourning traditions, and was accompanied by many grief rituals. The period of mourning was often more than a year long, and

Sarah, Jessie, and I wanted to experience the “happiest place on earth” at Christmastime, so last week, we visited Disneyland.  It was my first time since Judson’s “Make-A-Wish” vacation. As we went from attraction to attraction, I grieved inwardly; I remembered the challenges Jud had when we visited and I also imagined the joy he

Amy, a friend we have never met, but one who has been walking this journey with us, sent us a slideshow she made of Jud, and the song she chose spoke so well of my thoughts and feelings, that I thought I’d post it here: This is not at all how We thought it was

The night before Judson died, both my sister-in-laws orchestrated for a woman to come over to our home and professionally save Jud’s hand and foot impressions in clay. I received them back this week-dried, painted, fired in the kiln, and prepared to hang on our wall. I didn’t anticipate being so affected by these pieces

I made my fifth visit to Judson’s graveside, since his burial on November 13th. The times I visited previously, I expected to be extremely emotional, but was not.  I simply sat there on my blanket next to his plot, paralyzed, still in a state of shock. This visit was different; I was already crying when

I remember the first moment that I felt a pit in my stomach, sensing nothing in our lives was ever going to be the same again. It was a Monday morning, June 11th, and I was feeding Judson at the breakfast table.  I had taken Jud to visit his pediatrician the Thursday prior, to discuss

I hate Krabbe disease.  As Krabbe rapidly destroyed Judson’s body in five months, right before our eyes, and we watched our boy suffer and die at the hand of this horrendous affliction, my disdain for Krabbe has grown. I absolutely abohr Krabbe disease. Even more so, I hate, loathe, and despise the enemy who created