This is Penning Bull, a baseball newsletter delivered via email to fans who like thinking about the game in new ways. Subscriptions run just $11.11 for a year. Why $11.11? The answer to that question is at the heart of this project. My eldest son, Emerson, was born on November 11, 2011, with a serious congenital heart defect called Hypoplastic Left Heart Syndrome. He survived two open-heart surgeries by the time he was five months old, and spent the majority of his first year of life living at Children’s Hospital of Minneapolis.
As he grew and gained strength, we discovered a number of other things that made Emerson’s life harder. He had partial hearing loss; a coloboma in his right eye that compromised his vision; hypotonia in his musculature; and developmental delays, some of which we attributed to the difficult medical start to his life. Emerson had a tracheostomy tube and used a ventilator to assist his breathing for the first two and a half years of his life. He had a feeding tube and never ate substantial amounts orally. His immune system was perpetually in need of reinforcement, and was often compromised even so. We eventually found out that he had Kabuki Syndrome, a multisystem genetic disorder that even helped explain the heart defects we discovered before he was born.
Despite all of those hurdles, Emerson became a lively and personable boy. We had a second son when Emerson was one and a half, and a third just before he turned four. He loved his brothers, music, swings, and patty-cake. He went to preschool starting in September 2015, in a fully integrated classroom, and did great there. He never walked on his own, but did so with assistance. He learned to pull himself up from a sitting to standing position. He learned some sign language.
However, Emerson had mounting health problems in the winter of 2015-16. He was due for a third heart surgery in the summer of 2016, but we never got that far. In March, he got quite sick, and then one day—March 23—he had an unexpected cardiac failure. We rushed him to the hospital, where the staff did a heroic job. They saved him, for a few days. He was placed on ECMO, a heart-and-lung machine of sorts, and treated for an infectious strand of strep that had attacked quickly. (We’d just been in and found he didn’t have strep a couple weeks before.) He made marvelous progress for those few days, his body and his spirit showing their unbelievable penchant for fighting against the odds. On the following Monday, though, after the swelling in his brain subsided (swelling happens any time there’s an interruption of oxygen flow to the brain, and the interruption was just too long in his case), bleeding developed in that brain. We ran out of options. During those five days in the hospital, Emerson was occasionally alert, able to see us and hear and acknowledge us, but by the time we got to hold him again (Monday, March 28, at 6:30 PM), it was only to say goodbye.
A year and a half later, I’ve processed hardly any of this. I mean I’ve done nothing but process it, but the process is eternally incomplete. This fall, Emerson should be going to kindergarten. Some cousins who are basically the same age are doing that. It hurts like Hell, all of it, and I find myself wanting to do something. I cry frequently, look at pictures of him often, talk to him when I’m walking somewhere by myself, and share in the grief of my wife; our second son, Sorkin (he’s four, and the days when he really remembers Emerson are about as frequent as the days when he doesn’t; I’m not sure which is more painful); and so much of our family. None of it really keeps Emerson close at hand, though, as I go about my daily rituals and routines. None of it, to be sure, makes him feel near when I’m writing about something as comparatively frivolous as baseball.
The goal here is to change that. For every $11.11 subscription purchased, I’ll give $1.11 to one of four charities, in rotation:
- The American Heart Association
- Kabuki Syndrome Network
- Children’s Hospitals and Clinics of Minnesota
- Ronald McDonald House Charities
Baseball writing is not my primary job. This newsletter certainly isn’t going to become my primary job. What it will become, I hope, is a way for me to get more of my writing out of my head and into the eyes and minds of other baseball fans, and a way to honor my son’s memory while actually helping people.