January 27, 2018: Small Hopes and Delusional Hopes

January 27, 2018 marked Matt’s first full day in hospice. The night before, after that hard conversation, after tucking G and H into bed wondering whether they’d get any sleep overnight, I wrote. But this time, the letter that I wrote wasn’t to Matt. This time, I wrote: to friends—Matt’s college friends, high school friends, and our city friends—to G’s and H’s teachers; and to our community, the circle of friends who’d stood by with playdates and carpools and daily reminders that an army was standing beside us. I wrote to tell them that we had nothing left with which to fight this tumor, I wrote to tell them that our most recent effort—brain surgery—was relatively successful and still the invisible monster got the better of us. I wrote to tell them the doctor believed Matt had weeks remaining. Some part of me envisioned weeks of visitors, a stream of best friends and old friends coming to spend time with Matt, to bring out some of whatever was left of the real Matt. I imagined sunny afternoons during which Matt found a little joy. Of course, the cruelty of brain cancer—those visions never came to pass.

When I woke up on the morning of the 27th, I woke up to notes from friends near and far. All those friends that Matt had managed to keep in his orbit over his forty years, all of them reached out, a network larger than I could have imagined. There was shock and sadness, of course, but even more so, there was an outpouring of love and dozens and dozens of stories about how Matt had changed their lives—from childhood shenanigans to first jobs.

So many people wanted to visit, but two things had to happen before anyone outside of our immediate family could visit. G and H needed to see Matt. And Matt needed to wake up. When I called the nurses at hospice on the morning of January 27, 2018 for an update, they told me that Matt wasn’t yet responsive. Worry began to bloom in my stomach—G had her suitcase of mementos packed, both kids drew pictures and wrote notes, they had so many plans for the real Matt—and I could only hope. Hope that they had the visit they wanted and needed. Hope that Matt woke up for them. Hope that if he woke up, he was a version of himself that they wanted to see. Small hopes in a time marked by hopelessness.

Before we went to the hospice, G, H, and I started the day with art therapy. The art therapist was well aware of the conversation I’d had with them the night before and spent their sessions working on helping them identify and understand their feelings. One of the emails I’d received had been from H’s teacher, who’d mentioned that H had been more physical in class, angrier. When I told the art therapist, she said she knew—all of the pictures he’d drawn were marked by dark reds and angry volcanoes; it was eye-opening to see how H’s feelings, which he couldn’t verbalize, came out through art. Eye-opening and heartbreaking. He was entitled to that anger, but that didn’t mean I didn’t wish I could bear it for him, save him from it. For twenty months, Matt and I had tried to shield G and H from the worst of it by any means possible, and now nothing stood between them and the truth.

We spent the rest of the morning and afternoon with Matt. G and H read him their notes and watched Netflix on the spotty Wi-Fi connection. When Matt’s parents came, we all sat together in that sunny private room and talked, swapped news and stories, played game after game of Uno and Tic-Tac-Toe and Hangman, the way we would have if we’d been sitting in our living room on a snow day. Matt slept through it all, breathing deeply and lightly in turn.

When Matt’s parents took G and H to dinner, I sat beside Matt and wrote to him. I wrote about telling G and H every truth I knew–that Daddy won’t be coming home or getting better. I wrote about how I spoke those words and instantly wanted to take them back, because what if. What if we had that eleventh hour miracle?

Even though I knew I was supposed to stop hoping, I couldn’t. After twenty months of hoping, hope had become a way of life, as natural as breathing. Not hoping was as impossible as picturing a future without Matt.

So I hoped. Small hopes and delusional hopes, but hopes nonetheless.

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