December 12, 2017 was relievedly calmer than the day before. Matt’s cognition hadn’t improved but he wasn’t agitated. He accepted that he might be confused about certain topics and made efforts to understand his confusion, which helped me understand his confusion, which made it easier to communicate. That missing layer of anger changed the entire shape of the day and proved that we weren’t broken, despite it all.
December 12, 2017 marked Matt’s ninth day of whole brain radiation. By this point, I’d learned the exact time Matt and I needed to leave in order to skip morning rush hour but beat the George Washington Bridge construction, which closed off a lane of traffic everyday after 10:30 a.m.
We made it to radiation and back to New Jersey without incident. Presumably, we stopped to pick up lunch, came home, ate, and, while Matt napped, I took care of the things at home that needed to be taken care of. All without incident. Which meant it was a good day.
That night marked the first night of Chanukah. We lit the candles and exchanged gifts. G and H had purchased gifts for Matt at their school’s holiday boutique and had been looking forward to presenting their gifts to him. G gave Matt a small trophy with the words “World’s Best Dad” printed onto the face of the trophy. After we exchanged gifts, I took a picture of Matt with G and H. It would be the last photo I’d take of Matt with his kids.
The text messages from one year ago today don’t reveal much about the day. My imperfect memory fails me, too. I don’t remember December 12th, our last first night of Chanukah. If I’d known it would be our last first night, I might have paid more attention—but, as I’ve noted, hope is a double edged sword in that way. I have only the photo I took. But that photo tells the story, the old idiom—a picture is worth a thousand words—proves true.
When I look at that photo, I have trouble seeing Matt. There are the obvious physical changes he’d undergone. In the twenty months since his surgery, he’d earned too many scars. A scar for the tumor removed on June 8. A scar on his eyebrow for the fall on October 1. A scar and a severe bump where the shunt had been placed on October 5. His skull was dotted with small bumps where mini clusters of tumor pushed. Steroids had made his face puffy—a side effect he’d never been afflicted with until now.
But, the reason I don’t see Matt when I look at that photo goes beyond the obvious changes. The reason I don’t see Matt is because his smile isn’t his; it doesn’t reach his eyes.
I don’t know when that happened, when his smile stopped being his. This story will apparently not reveal the last time Matt’s smile was his own. I don’t know why his smile stopped being his—whether the muscles in his face failed him or something else.
I know only that despite all we’d been through, one year ago today, G and H found a way to smile. I know only that when G looks at that trophy, which now sits in her room on a chair beside a framed photo of her and her father, she sees loss, but also, hopefully, remembers the immeasurable love that existed in that moment and so many others.