I am nearly nine months into Post Hope and there are still some words I can’t say out loud. There are words I can’t bring myself to write. I have found ways to talk around the truth of February 3rd, to describe what happened to Matt without using those words that start with “D”. But in today’s post, I can’t escape the word.
One year ago today, Matt and I didn’t go to a Halloween party hosted by good friends of ours. I knew we were unlikely to go the moment we received the invitation—large crowds were difficult for Matt; the noise and speed of many conversations at once made him feel disoriented; he grew tired too quickly—but I nevertheless waited until the last minute to RSVP. That ever-present hope. Possibly that ever-present hope dashed with a touch of denial. When I texted the hostess of the party to tell her we wouldn’t make it, I said we were just waiting for our upswing. I promised we’d be there next year.
For reasons that remain a mystery to me, one year ago today I decided to approach a conversation Matt and I had, thus far, steadfastly and stubbornly avoided. Standing side-by-side at the bathroom sink, toothbrushes in hand (because my timing is clearly impeccable), I brought up the conversation I’d had with the Columbia doctor on October 4. What to do if Matt couldn’t make his own nuanced decisions. How hard should we keep fighting if he was incapable of making his own decisions. We’d never talked about it before. We hadn’t wanted to. I still didn’t want to. But, nevertheless, I asked. And instantly regretted it.
I remember the way Matt paused. The way he looked at me and the words he said. “Why would we talk about that? If we’re talking about that, then it means I’m dying and that’s not happening.”
That “D” word. Hearing Matt use that “D” word felt like forgetting how to breathe.
If there was a way to take back words, I would have found it for that moment and those words. I told him I agreed and I was sorry I asked. I blamed the doctors. Guilt burned through my dreams that night. The worst thing I’d ever done was ask that question, even if it likely needed to be asked.
Over the past almost nine months, I’ve come back to this moment more times than I would like to admit. I remember wanting to have the practical conversation and being terrified the practical conversation would bring in bad energy that would jinx us. Not logical, but also not untrue. I remember Matt’s certainty that everything would be fine and the pang of worry I felt because the odds kept stacking up against us and what if Matt was already incapable of seeing that. I remember the guilt I felt for letting my thoughts anywhere near that terrible place where the message was something other than everything will be fine. Mostly, I remember Matt, his purity of hope, and that steals my breath every time.
In the first paragraph, I wrote that I don’t like to use the “D” words. Even in this post. I tried to force myself to write those words out (other than to quote Matt) and I couldn’t. Not even for the sake of clarity. But, unlike me, G and H are very comfortable with all the words that I avoid. They talk about what happened on February 3rd with direct language. They don’t avoid the truth with strangers. (Confession: I flat out lie to strangers who casually ask about my husband all the time because I can’t bring myself to speak that “D” word. It’s a weird, illogical Post Hope side effect.)
Nine months ago, I had another horrible conversation I never wanted to have. With G and H. To tell them that the doctors couldn’t help Daddy anymore. Nine months ago, G and H were forced to grow up even faster. Nine months ago, and every day since, G and H have proved that they are more resilient than almost anyone else I know.
I have one last memory of October 28th. After the horrible conversation, after the awkwardness and the incessant internal dialogue faded, I remember laughing with Matt. He’d done something strange—no doubt, tumor related—I pointed it out, and he made a self-deprecating joke about it. Then he’d simply laughed and his laughter was infectious. We both laughed until we couldn’t breathe in the best way.
It’s one of the last times, if not the last time, we laughed like that together.
It’s a memory I’m grateful to have and honored to share.