September 3, 2017: Quiet Days in the Sunshine

We—G, H, Matt, and I—didn’t do much on September 3, 2017. We’d been invited to a barbecue at a friend’s house, but Matt wasn’t in the mood to socialize, or even attempt to socialize. The numb foot, the headaches, the back and neck pain, and the double vision meant that Matt wanted a quiet day with just our family of four. I didn’t blame him. Now that I believed we were on the road to an upswing (Gamma Knife completed, clear spinal MRI), I remember wanting to soak up these last few summer days with G and H, make up for the time I’d missed while at Duke and while preoccupied with the world of cancer.

I’m not sure what that quiet day entailed. I know we took a trip to Target—H’s declared most favorite place in the world—for G to spend her hard earned tooth fairy money. I remember we came home from a morning of errands and Matt went upstairs to rest while the kids and I sat in the sunshine on the deck coaxing a Hatchimal out of its shell. I don’t remember if we watched a movie, ordered in, or answered any of G and H’s questions about the doctor appointment in North Carolina. I remember only being happy to have this day to stop running. The next day was the lake’s Labor Day carnival and Matt’s birthday. The day after that began the frustrating and unbelievably difficult process of finding a specialized ophthalmologist who could prescribe and create prism lenses for Matt before he left for a business trip to Chicago. The day after that would be G’s and H’s first day of school and Matt’s (last ever) Avastin infusion.

The story of September 3rd might be the story of a last. Not only was September 3, 2017 Matt’s last day as a 39-year-old, but there’s a chance that September 3, 2017 was our last Sunday as a family before the dark days I’ve alluded to time and again over the past 162 posts begin. Soon G and H will learn the word cancer. Soon doctors will pull me aside and tell me things for which my first instinct will be to scream that they don’t know Matt—he will prove them wrong. Soon the story will take turns that will be hard to read and the story I tell might break my heart all over again.

If April was the story of a rapid decline, May the story of an upswing and Avastin, and August the month when the world turned upside down, then the story of September is one of 9-1-1 calls and miraculous MRIs, breakdowns and upswings, devastations and triumphs. The story of September is one of endless running, a marathon in which every step forward is met by a shove that sends us staggering two steps back.

Today, September 3, 2018, the last day of G and H’s summer break, marks seven months in Post Hope. G, H, and I don’t have much planned for their last day before the start of the school year, though we are discussing a few options. Like last year, I find myself happy to have today to simply not run around. I know, now, more than ever, how precious and fragile those quiet days can be.

But seven months into Post Hope, I’ve realized something about how often I’ve chosen quiet days for G, H, and myself.

A few days ago, a friend asked whether I was entering a writing contest I’ve entered every year since I completed my first manuscript. I have invested my heart, soul, and confidence in this contest, and lost every single time. And every single time, Matt was there to help scrape my pride off the floor. I told my friend no, I wasn’t entering. But, the only reason I could find for not entering was that I was too scared to lose this time around. That answer didn’t sit well. That answer didn’t feel like sitting in the sunshine to appreciate the quiet days. Instead, that answer felt like surrendering to fear, or more accurately, to grief masquerading as fear.

I entered the contest, submitted my entry with fourteen seconds left to spare before the submission window closed.

What I’m realizing, seven months into Post Hope, is that there’s a difference between stopping to appreciate those fragile days and declining to run because you’re beginning to sink into the muck.

I may not have hope that I’ll win the contest (the chances of winning this contest are lower than the chances of earning a spot in Harvard’s freshman class), but I realized that I cannot let the fear and grief of Post Hope keep me from taking a step. A small step, at least. Just to keep from sinking.

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