Near the end of 2014, I presided over a small kitchen island filled with an array of marijuana-laced products trying to decide which to give my son, Sam, who recently celebrated his 4th birthday. My options included a homemade jar of peanut butter that filled the room with a skunky smell, a chocolate bar wrapped in tinfoil, a handful of multi-colored hard candies in a plastic Ziploc baggie, and a red velvet cookie with buttercream icing. My recently recruited taste-testers, including my husband, Mike, my best friend, and two of my aunts, crowded around the table, awaiting my decision. Eventually, I selected the red velvet cookie. It was the only product Sam was likely to consume. I broke the cookie into small, slightly different doses and distributed them to the adults around me.
Sam sat downstairs on the couch under a mountain of velvety blankets watching Curious George, the only thing that had provided him with any comfort for weeks. Approximately fifteen months prior, he had been diagnosed with an inoperable, terminal brain cancer called DIPG. Most kids died from the tumor within nine months of diagnosis. Having survived more than a year, Sam was on borrowed time.
Earlier that fall, signs of what doctors called progression emerged like stars at twilight as the light in Sam grew dimmer. Sam’s anxiety was at an all-time high. He couldn’t sleep. Mike and I took turns sitting up with him for hours each night, singing, rubbing, soothing, attempting to coax him to close his eyes and relax. His already low energy levels plunged below what we thought possible. His favorite games — disassembling the furniture in the basement to build forts, making “birthday cakes” using every spice and sprinkle in the pantry, tearing around the cul-de-sac in his four-wheeler — no longer held any joy. Lack of sleep and the increasingly heavier and more frequent doses of narcotics his palliative care team prescribed gave his skin a waxy, translucent quality. His eyes were bloodshot, his face nearly immobilized.
Mike and I tried a comprehensive set of eastern and western remedies to ease Sam’s pain, anxiety, and insomnia. Each night, I’d drop precise amounts of rosehip, peppermint, and chamomile on my hands and methodically rub them on Sam’s neck, back, hips, and legs, singing lullabies to the rhythm of my hands like a witch casting a healing spell. We spiked…