One year ago today, Matt and I stepped out of the world of brain cancer. Or, at least, stepped as far out of the world of brain cancer as the invisible tether mooring us in place would allow.
Throughout our relationship, Matt had made no secret of the fact that he did not enjoy Broadway shows, especially Broadway musicals. Watching people sing and dance on stage wasn’t his idea of a fun Sunday afternoon, especially a football Sunday afternoon. But on December 3, 2017, we left G and H with Matt’s parents—to enjoy a botanical train show—and took a bus into the city to see the award winning Broadway show, Hamilton.
We met Matt’s sister and brother-in-law in the city for an early lunch and headed toward the theater. Matt’s vision had not improved since the eye doctor appointment that had prompted the visit to Columbia’s emergency room (and the life-changing MRI that followed), and from our seats, I wasn’t sure what exactly Matt could see. I wasn’t sure what exactly he could follow in terms of the plot. But every time I sneaked a glance to see how he was enjoying the show, he was focused on the stage.
After the show, Matt confirmed what I had seen in his expression. He loved the show, loved the music and that was enough to carry him through the two hours of performance, despite the visual difficulties, despite a not uneventful trip to the bathroom.
Today marks ten months in Post Hope. Last night, G, H, and I lit the Chanukah candles without Matt for the first time. Another first. They opened their first Chanukah gift without Matt. They watched me build an indoor basketball hoop without Matt. All day they asked whether Daddy would have done this or that—would Daddy have built the basketball hoop, would Daddy have lit the candle, would he have known the prayer. The answer was yes to all of their questions.
The directions for the basketball hoop called for two strong adults to lift the backboard. I told G and H that I may not be able to finish building the basketball hoop today—we’d have to wait until someone could come help me. The excitement in their eyes faded. Because they understood. If Daddy had been here, the basketball hoop would have been built. Yet another Post Hope wound. And we (G, H, and I) have learned that sometimes the smallest cuts are the ones that wound the deepest. I told them I’d try.
With G and H looking on and attempting to help—although whether they helped or hindered is questionable (sorry, but true)—we raised the backboard. We tightened all the screws and attached all the wires. Two plus hours later, we had a working indoor basketball hoop. (And it hasn’t collapsed in on itself, yet!)
Post Hope is full of days like yesterday. Defeats and a triumphs wrapped into the same moment. The life we never wanted, the life that always feels like its missing something crucial, is a life that consistently forces us to see we are more capable than we’d imagined. Lessons we’d rather not have had to learn in this way, but valuable lessons nevertheless.