November 4, 2017 was supposed to be the day we boarded a Disney Marvel Superhero cruise ship and gave H—our superhero obsessed son—the vacation of his dreams. Instead, we went to H’s soccer game, G’s final cheerleading event, and Matt went into the office with his dad for a few hours in the afternoon.
We’d canceled the cruise weeks earlier, after the seizure and fall and extended stay at Columbia forced us to stare reality in the face and admit an impossible truth about Matt. A weeklong cruise away from doctors and MRI equipment was simply not practical. Matt removed from his element and typical routine was not easy. (Though that is a truth I would learn later in the week.)
I don’t remember his trip into the office. When I sift through my recollections, I find a vague memory of Matt telling me he felt good getting back to the office, although he didn’t do much more than organize his papers.
That night, my mom stayed with G and H so Matt and I could get out. Always chasing normal. Always looking for a way to feel connected to a life we’d left behind in the beginning of September. We’d been spending a lot of time together, but all that time was based around Matt’s appointments or medications. All that time was spent with Glioblastoma on our minds.
I remember the frustration I encountered trying to explain the plan to Matt over text message while I was at cheer with Gab. In Post Hope, as I re-read our text messages, I can almost hear the frustration he felt trying to understand our plan. Ultimately, instead of letting our frustrations continue to ratchet up, I ended the text chain telling him not to worry—I had it under control. Maybe that was the ultimate frustration for him. That renegotiating relationships. It was hard for Matt to feel as though he had no control over his night. It was equally hard for Matt to exercise any control—our short text message chain is sprinkled with confused concepts and mixed up words. The cruelty of brain cancer: frustration was inevitable.
We met my sister for dinner and a movie. And, because I struggled to remember this night, I asked my sister for her memories—despite my promise to use texts, emails, photos, and my own imperfect memory to write about our Year in Hope. She said she remembered Matt being quiet and disengaged. He couldn’t remember what he’d ordered, so he was confused when the food arrived. After she shared her memories, I remembered, too.
November 4, 2017 doesn’t stand out as a particularly hard day. Or a particularly easy day. When I look back on this day one year ago today, I remember H’s disappointment when he learned about the canceled trip. I remember G realizing Daddy hadn’t made it to watch her cheer at all that season. I remember just trying to do the best we could, and hoping that would be enough.
In hindsight, I know it was.