This Is Us
What My Son’s Final Words Taught Me About Happiness
Joy comes when we let go of the idea that we deserve it
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 that had begun a few days prior when an MRI confirmed that what my husband, Mike, and I had avoided and dreaded and planned for the past 30 months was upon us. Sam’s inoperable tumor, a monster scientists called a “diffuse intrinsic pontine glioma” or DIPG, was growing. The final moments were here. Death tugged on Sam’s one hand while we desperately clung to the other. I remember feeling the life slowly draining from his body, like a tire with a slow leak.
The past week had been chaos — a series of desperate actions and last-minute decisions and impossible, conflicting conversations.
