February 3, 2018 started with plans for the next day. G and H had an art therapy session in the morning, and during that session, the therapist suggested we make a family art project. She planned to come to hospice the next day, Sunday the 4th, so we could create something with all four of our handprints. One last family activity. One more item to add to the list of things we (our family of four) wouldn’t get to do together.
After therapy, we (G, H, and I) had a few quiet hours with Matt. When Matt’s lips looked chapped the nurses gave me Chapstick for him. I told them I couldn’t do it; one week earlier, I’d hurt him applying Chapstick. I couldn’t risk hurting him again. They encouraged me to do it, anyway, and promised me that Matt wasn’t feeling any pain. I don’t know whether I was brave enough to put on that Chapstick. I can’t remember, but I have my suspicions.
Afterward, once visitors began to arrive, the day shuffled forward like all the other days in hospice, with rounds of Uno and Hangman and Tic-Tac-Toe, with a mix of family and close family friends, with chatter and a few tears, and sometimes with a bit of laughter. Over the previous week, nearly all of Matt’s closest family had come—parents and sisters, sisters-in-law and brothers-in-law, mother-in-law and aunts and uncles and cousins. I hope Matt heard all those voices, felt all the love that filled that quiet sunny room at the end of the hall. I hope he knew it was all for him.
Slowly, one after another, the visitors left. Last to leave were G and H, who left with Matt’s sisters and brother-in-law. Unlike other days and nights when H had been confronted with the idea of separating from me, he didn’t balk at the idea; he didn’t cling to me and confirm I’d be home soon. Both G and H were looking forward to playing with their baby cousin who’d been waiting for them at Grandma’s house.
By 5:50 p.m., the sun had set and Matt and I were alone. I settled into a chair beside him, grateful for a few hours together. I turned on an audiobook to fill the suddenly too quiet space—and I could almost swear that Matt made a displeased face, which is maybe true or maybe just the side effect of too much emotion and not enough sleep. I closed the book and didn’t turn anything on after that. I just sat beside him.
My plan had been to be home for G’s and H’s bedtime. Though they were happy to leave earlier, I wanted them to have the consistency of a parent around. That need assessment—it seemed important that G and H had that steady presence everyday. But also, honestly—because especially today, this story deserves honesty—after a long day full of too many emotions, I wanted nothing more than to wrap my arms around G and H, to listen to their stories and see their smiles. Around 7:45, I walked out of Matt’s room, out of hospice, and stepped into my car. I started the engine, put the gear into drive, and made it halfway to the end of the parking lot before the first sob broke free. For reasons I can’t pin down, some part of my heart knew I’d made the wrong choice, I’d incorrectly assessed need. G and H were happy with their aunt and uncle, and they didn’t need me. But Matt did.
I parked the car and returned to Matt’s room, to the curious stares of the night nurses. I told them I just wanted to stay a bit longer. They offered me a blanket and said the words I’d heard too many times before: you’re too young to be here. I said we (Matt and I) are both too young to be here.
In books, in movies, when one character is barely hanging on to this life, the other character—wife, husband, soulmate—always gives permission to go. Maybe I’d read too many books and watched too many movies, but I thought maybe I was supposed to say something, give Matt permission to stop fighting after he’d fought so hard for so long. But I couldn’t get the words out. At the end of it all, I was too selfish to give Matt permission—and Matt had never truly needed my permission for anything before, anyway.
Instead, I told Matt this truth, which was the truth at the heart of our too short relationship. I told him that I’d always trusted him more than I’d trusted myself, and because of that, I would trust him now. I told him that if it was too hard—if it hurt too much and he was too tired and he needed to go—then I would support whatever choice he made. Despite all we’d been through—the cracks and shifts in our relationship—a kernel of us, our dynamic, remained and Matt was still the person I looked to for answers. I told him my only request was that I was there with him if he chose to leave, because I didn’t want him to be alone. Not ever, but especially not in this.
We sat together for something that might have been an hour or a lifetime. Only a single lamp lit the room. Only our breath filled the silence. And then, nothing—a hollow, aching, endless nothing. Matt’s next breath didn’t come. The moment I’d dreaded had come, and though I should have been prepared, I wasn’t. Because it was impossible to prepare for a moment that was as simple as a breath followed by a beat of silence, as infinitely complex as a breath and then a void.
The next minutes and hours are a blur in my memory. I called in the nurses—maybe for help, maybe to prove that I was overreacting. They confirmed the worst had happened and asked whether I wanted to call anyone. What followed was the worst phone call I’ve ever had to make.
I don’t know how much time passed before anyone arrived. Matt’s parents came. My mom and sister came. I don’t know what we did or said. We sat and stood for hours, mostly in silent vigil, as the unimaginable unfolded before us, as the unimaginable slowly took shape and form and became reality.
After twenty months, during which Matt never uttered a word of complaint, on February 3, 2018, at 9:37 p.m., Matt’s fight against that invisible monster ended. We lost. We weren’t supposed to lose, but we did.
Today is, unsurprisingly, hard to write. I want to find words that are sweeping and meaningful enough to explain February 3rd and I can’t. I can’t do more than tell the story, maybe because the words I need to explain February 3rd don’t exist or maybe because the grief has once again stolen my words–it’s been a year without Matt and that truth hurts too much for words. Maybe I’m still only able to scrape the surface of this heartache, which sometimes seems bottomless.
Months ago, I promised to try and soften the sharpest edges of this story, to show the moments that lit the way back to hope. Which is why there are a few more days of stories left to tell. There’s a little more light and love to be found.