I don’t like winter. Yes, yes, I know. “But you live in Minnesota!” you’re saying. True. I really don’t know what I’m thinking sometimes…especially when it’s below zero…

Last December, as we waited to hear back on Chuck’s potential need for surgery, we made a last-minute decision to buy tickets to “GLOW” – a huge light display show at the fairgrounds (yes, outside…in the snow) on a night there was also a concert (yes, outside…in the freezing cold).

So, during the first week of winter, we bundled up and drove off to spend the evening outside.

And it was actually a really fun evening! Cody loved seeing a favorite singer, watching the light displays set to music, and, quite frankly, playing on the giant snow piles the plows had made to make the fairground streets walkable.

A month later, we went to an ice castle maze – two weekends in a row.  Again, Cody had a blast, mostly because he’d memorized the maze and could evade us when he asked to play hide and seek in it.

We had decided to not waste the waiting until we knew if Chuck would need surgery, until the day he’d actually have surgery. We chose to find things to enjoy in the waiting. Even in Minnesota in winter. In freezing cold temperatures. In the dark.

Last week, six months after that last-minute decision to start living in the waiting, I drove Chuck to a PT appointment and decided I wouldn’t waste the wait with sitting in the car.

So, on the first day of summer, I took advantage of the nice weather to get a little exercise myself.

I had been listening to one song throughout the morning and listened again as I started walking. But I needed more music, because I was a little down that day, so I selected a Spotify playlist. I listened for maybe 20 minutes until it fully dawned on me what I was actually listening to – a playlist called “100 Days.”

Because it had also just dawned on me that I had forgotten what other day it was: 100 days after the stroke.

It was the 100th day of PT actually, because Chuck had the stroke and was then intubated and sedated for three days. Before the surgery, I had looked forward to the end of the next 100 days because his recovery would be complete by then, because it coincided with the summer solstice and I could celebrate that recovery by watching sunset at the local beach. But summer came, the 100 days came and went, and things are not back to the way they were before these latest 100 days, to the way we want them to be. 

A neighbor called me last week as I was organizing and consolidating my electronic and paper calendars.

“Are you going to be home tomorrow?”

“Ummm,” as I fumbled with the paper calendar in front of me, drawing a complete blank on what day it was and thus not sure where to look on the page to find tomorrow’s schedule.

“What day is it tomorrow?”

“Saturday.”

“Oh!  Yes, we’ll be home.”

I’ve gotten to the point where really all I can do is live hour to hour, appointment to appointment to summer rec activity.  Any more than that and my mind goes blank.

So, in the last 100 days we have lived day to day and even hour to hour. We took our annual lilac walk this spring through our neighborhood, even though Chuck had to bring his cane. Cody attended his first MLB game when his elementary class sang the national anthem at a Twins game (the national anthem!). I bought a 1000-piece puzzle which I figured would keep us busy most of the summer (we finished it in 9 days). We spent the first 100-degree day of summer playing at the beach. 

And in addition to all of those events, something else happened while I was living the last 100 days: I forgot that I was waiting.