Nearly five years ago, I knelt before my five-year-old son Sam in the basement of our friend’s home. The room was filled with a mishmash of furniture from upstairs and outside to accommodate all the people who had come to say goodbye. Sarah, Sam’s hospice nurse, was giving us directions for delivering morphine and other end-of-life medications. She told us to measure Sam’s life in “hours to days.” Sam had started to lose the ability to swallow. It was only a matter of time before he struggled to breathe.
I snuck off to the bathroom to quietly vomit, a habit…
I’ve always had an acute awareness of justice, a hypersensitive internal fairness meter. When things are out of balance, it leaves me with an irritating sense of discomfort, kinetic energy that burns until I attempt to right the wrongs I encounter.
Often those wrongs are small, an everyday social accounting of who owes what or who is doing more than their fair share, and my actions serve to merely re-balance social ledgers. I had this roommate after college: Emily. …
I am sitting in a brightly lit, modern conference room on the 11th floor of the Seattle Children’s Research Institute, surrounded by strangers, desperately wiping the tears streaming down my cheeks and choking back the sobs threatening to accompany them. It is not the first conference of this kind that I have attended nor is it the first time I have actively engaged with the disease that ended my five-year-old son’s life.
I like to think I swim in the deep end of Sam’s disease. I have listened to doctors present on the intricacies of Diffuse Intrinsic Pontine Gliomas (DIPG)…
I started practicing yoga consistently about a year before my son, Sam, died. I had tried yoga in the past, but as a form of exercise. In the months preceding and following Sam’s death, yoga became something else entirely. It gave me permission to spend time focusing on simple things like my breath and my body. It gave me a safe place to go. Yoga helped me find the spaces between and, in the process, a truer version of myself.
Sam was born with a rare, genetic condition called Ollier’s disease. We first noticed it when he was six months…
I’m sitting in the passenger seat of our minivan attempting to keep my four-year-old twins entertained on a long drive home. My face is hot and tingly, my palms slick as I relive an unpleasant encounter at a Cracker Barrel somewhere off I-95. My debit card was declined while trying to pay for my family’s meal. I know that it was not in error; my husband and I have exactly zero dollars to our name.
“I have to get a job,” I say to my husband.
I spend the rest of the drive home swallowing panic, ignoring my kids, and…