On December 9, 2017, Matt had his second weekend break from radiation. If swelling was the culprit behind his increased symptoms, then maybe the two day break from treatment would help.
We didn’t do much on December 9th. Snow was in the forecast and, by late morning, the roads were coated. When a friend texted to ask what we had planned for the day, I told her that we were staying in, even if it meant going stir crazy. The weather was just bad enough that I didn’t feel comfortable to drive us anywhere. In the text to my friend, I acknowledged that Matt, if he’d been Matt, would have been appalled that an inch or two of snow was forcing us to remain house bound.
When I re-read the text message I sent to a friend one year ago today, I couldn’t help but to see the Post Hope parallel. How many times in the last ten months have I thought if Matt was here, I’d—or wished for his opinion on something to do with G and H? How many times had I been pulled under by a grief wave because of the words “we’d have.” As in:
If Matt was here, we’d have gone out to dinner in the snow.
That statement—we’d have—is grief already creeping into our lives. It’s an acknowledgment of a loss. I didn’t recognize that fact then—couldn’t recognize it because grief was too unfamiliar a language. But I probably wouldn’t have wanted to, anyway.
The cruelty of brain cancer: how early the losses begin to pile up.
The reality is that one year ago today, Matt couldn’t drive us to dinner in the snow or help with most decisions. I couldn’t turn to him to discuss the plumber, a home improvement project, or any parenting issues that may have cropped up with G or H. The reality is that some parts of Post Hope started so much earlier than February 3rd.
In Post Hope, I often try to think what Matt would say when confronted by a problem or situation. Sometimes I’m certain of what he would say or do and I can picture the joke or facial expression that might accompany his opinion. Sometimes I think I’m certain of what he would say, but I’m also certain I’m being self-serving. And sometimes I just don’t know. I don’t know which way he’d land on a topic because we didn’t have enough time.
This blog was one of the first decisions I made in Post Hope without Matt. I wasn’t sure what he’d say to do—write or not, make it public or keep it private. I still remember the way my hands shook as I posted the link to my Facebook timeline. Time will ultimately tell whether this blog was a good decision or not, whether it does anything to help G and H understand our story, whether it keeps Matt’s spirit and humor and strength of character alive after the story ends. But, as of today, our story has been viewed more than 100,000 times by people in countries all around the world. I know (thanks to emails and comments) that this story has done a little good, made however small an impact on others. For that I’m grateful.
Maybe I’m being self-serving, but I think if I’d had the chance to discuss this blog with Matt, he would have wanted to share his story. He’d have been happy to know his unique experience had helped someone else make sense of their own story, feel a little less alone. He’d have believed in the hope that a little light can be found in so much dark.