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headshot of Jamie Martin

As the calendar flips to November, I feel the wave of emotions beginning to swell. It’s a combination of anxiety and grief, of crystal-clear memories and a deep longing for things to have turned out differently. It’s the recognition that I’m dwelling on the past yet need to keep moving forward.

This month holds significance for me and many people I love because it’s full of anniversaries of some of the hardest moments we’ve experienced — things we wish had never happened but now live with and try to learn from.

  • November 1, 2013: My sister and her husband took my 6-month-old nephew, Bryce, to the emergency room because they had noticed some sudden and alarming regressions in his development.
  • November 6, 2013: Bryce was admitted to the hospital for more tests.
  • November 9, 2013: The day I realized Bryce was dying. He had been released from the hospital the prior day, initially diagnosed with a seizure disorder. As my sister propped him up across from my 5-month-old daughter — who was so strong and steady — it hit me that something much more serious was going on. I just knew.
  • November 11–15, 2013: Bryce was readmitted for neurological and genetic testing; the words “metabolic disorders” and “leukodystrophy” entered our vocabulary.
  • November 19, 2013: Bryce was diagnosed with Krabbe disease, a rare and terminal genetic disorder. The average life expectancy for a child with early-onset Krabbe is two years.
  • November 24, 2013: My dad, 55, was rushed into emergency triple-bypass heart surgery. A few hours earlier, he’d been deer hunting alone. The doctors later told us that if he had tried to handle the deer on his own, he likely would have suffered a massive heart attack in the woods and died.

Fast-forward a year . . .

  • November 22–25, 2014: We spent the weekend at my parents’ home holding Bryce. He didn’t open his eyes much at that point, and we weren’t sure if he could hear us. But we constantly squeezed his little hands three times to let him know how much we loved him.
  • November 26, 2014: One year and one week after his diagnosis, Bryce passed away at home, in my sister’s arms. It was the day before Thanksgiving.

That holiday changed my view of this time of year and all the hoopla that often goes with it. Immediate family members who had gathered the day before hunkered down at my sister’s home. We stayed in our pajamas. We ate chicken wild rice soup. We grieved together; we gave each other space to grieve alone.

That evening, when other family members arrived, we all squished into the living room with plates of Thanksgiving leftovers provided by extended family. Despite our awful heartache, we shared stories and laughed, comforted by one another’s company and the connection that Bryce’s illness and passing had created.

This year marks five years since we lost Bryce. Looking back, I now recognize that Thanksgiving as the most meaningful I’ve experienced. It reinforced that it’s not the stuff — or stuffing — that’s important, but the presence of the people we love most. It’s supporting each other through the good, bad, and seemingly unbearable.

It’s also a date on the calendar that reminds me that healing is possible even though grief is ever-present. It’s a light at the end of a dark tunnel that’s taught me a whole lot about what really matters.

Photo by: Sara Rubinstein

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