January 31, 2018 marked Matt’s fifth full day in hospice. Five days of sitting by his bedside, of measuring breaths, of helplessness and hopelessness, and waiting to wake from a nightmare. Five days of reflecting on all the things we had done and all the things we hadn’t had a chance to do. Five days of not knowing whether there would be a tomorrow.
There isn’t much left to write about these days. When I undertook this project more than three hundred days ago, I knew that there wouldn’t be much to say during hospice week, this week when there was nothing left to fight for and time all but stood still. There were funeral plans to make and logistics to configure, but I didn’t—couldn’t—make those plans or configure those logistics. Those kinds of decisions—about the casket and service and rabbi—I knew would simply shatter the fragile strength I’d summoned to make it through these weeks.
Maybe it was a kind of cowardice. Maybe it was my final act of denial. Or maybe it was simply survival, self-preservation. But, save for confirming that I wanted all of Matt’s friends—near and far—to come to his service and shiva, I couldn’t allow myself to see past the moment we were in. For twenty months I’d done nothing but look ahead, either waiting for the other shoe to drop or for the next upswing to sweep us back into a place where we could breathe, but now I couldn’t see beyond that quiet, sunny room.
And I didn’t have to. As I had so many times during the previous twenty months, I found myself grateful for the people who surrounded me. Because when I didn’t have the strength, Matt’s parents took over planning the details. They found a reserve of strength to make those decisions that I couldn’t, and in doing so, they gave me the gift of living in the moment with Matt beside me, rather than looking into that bleak future. It’s a gift I don’t think I could ever repay.
One year ago today, I didn’t know it would be Matt’s last Wednesday. I didn’t know we had three more days left. And I didn’t know how we (G, H, and I) were going to survive, if we even could survive a life with a Matt-sized hole in it. A too large part of me wasn’t sure we could.
Yesterday, I took G and H to the art therapist for their weekly appointment. The therapist invited me into the room and we decorated rocks to place on Matt’s headstone when we visit on the 3rd. I don’t know that I’m allowed to share what G and H wrote on their rocks—I didn’t ask and wouldn’t want to assume—but the message H wrote to Matt, the thing he wanted his dad to know most of all after a year in Post Hope, confirmed that we had done more than survive this first year. And I don’t think that’s a betrayal to Matt. Instead, I think, maybe, that’s what Matt would have hoped for. If he knew he couldn’t be with us, if that wasn’t an option in this lifetime, then I think he would have hoped that we did more than survive. I think he would have hoped for us to thrive.