Matt reserved Sundays in the Fall for football. When we first started dating, Matt’s obsession with football baffled me. I couldn’t understand the compulsion to spend an entire day parked in front of the television watching a game I didn’t understand. After we had kids, Matt’s obsession with football (still baffled me, but) gave way to the realities of parenthood—parking in front of a television is not that fun when surrounded by two kids with energy to burn—and he learned to prioritize the important games and keep tabs on the other games via his phone. Nevertheless, football Sunday—with all its bells and whistles—was one of his absolute favorite pastimes.
On September 24, 2017, Matt wanted to watch football and I breathed a sigh of relief. We’d had another long night. Matt had been up dozens of times. He’d been in pain and back and forth from the bathroom, his steps unsteady, his vision questionable in the darkness. Neither of us had gotten much sleep. But Matt wanting to watch football felt normal, felt like Matt.
My brother came to visit and offered to spend the day watching football with Matt—they both loved the Jets despite the endless losing streak. A friend texted me to let me know he was helping out with one of Matt’s many fantasy football teams. I took G to a birthday party and remember sitting outside on a bench with H in the unseasonable heat feeling simply worn down by the worrying and planning and mental load of it all.
When we came home, my brother told me Matt had napped for much of the game, but in the time he’d been awake, they’d had a good time talking sports. Matt had mixed up a few words, but his thinking had been coherent. By the early evening, Matt’s pain was mild—tolerable—and he’d wanted to read bedtime stories to G and H.
I remember sitting at the top of the steps, listening to Matt read to G and H. A friend texted to ask how Matt was doing and I responded: Fingers crossed!! But I’m feeling hopeful!
When I look back on these days, I see how far we were from where we wanted to be. I see how easily what once I would have taken for granted became a benchmark, a way to measure progress. I see what I always see. The friends and family who surrounded us, Matt’s determination to be present with G and H, the ever present hope that things were getting better, one football Sunday, one bedtime story, one sigh of relief at a time.
When I look back on these September days—the first two hospital visits—I remember every morning waking up and feeling as though we were teetering on an edge. I remembering waking up every morning knowing that we were in a transition, that soon we’d stop teetering and fall one way or another. I hoped, obviously, that we’d land softly, back in our old life.
Maybe it’s simply the change of seasons or the echo of last year, but lately, in Post Hope, I find myself waking up with that same feeling, like we (G, H, and I) are in a transition, on the edge of an inevitable change. A step after so long being unable to do anything more than stand still and hope not to fall. I know there’s no chance we’ll land softly back in our old life and I don’t know whether I’ll be brave enough to face whatever that change may be, but I do know, that in Post Hope, I find myself hoping.
And that’s a benchmark, a way to measure progress, that I know not to take for granted.