May 29, 2017: Control

If everything had gone exactly to plan after the polio infusion in March, Matt and I would have been on a flight to North Carolina at 4:30 p.m. on May 29, 2017. Instead, we were debating what to do with two kids in less than ideal weather.

Back in March, when we committed to the polio trial and monthly MRIs at Duke, we made an appointment for a MRI early in the morning of May 30, 2017. It was the only appointment available during the timeframe the polio trial required us to have another scan. Which meant, flying the night before. Which meant, missing the Memorial Day party at the town lake with the kids.

Not a catastrophe, but I hated to think of the kids missing anything because of cancer. However much I wanted normal for myself, I wanted it one hundred times more for them.

When our MRI schedule changed to accommodate the Avastin infusions, I’m sure a million thoughts went through my head at the same time. One of them, strangely, was a sigh of relief. With the new schedule at least we could take the kids to the party with their friends. At least we didn’t have to disappoint them.

When the day rolled around, the sky was overcast and the temperature was unseasonably cold. Instead of going to the lake we decided to go to Chuck E. Cheese with some friends. No party.

When I sat down to write this post, I wasn’t sure what my point was. What about the prospect of missing the Memorial Day party with the kids upset me for weeks after we made the original May 30th appointment, but then given the chance to go, we chose not to because of bad weather? Why wasn’t I more upset that we didn’t take the kids to the Memorial Day party after all the angst I’d put myself through?

The answer is control. When we made the May 30th appointment, we had virtually no choice in the matter; we had to miss the Memorial Day party. When the schedule changed, it became our choice again. We had control back.

This year, I took the kids to that Memorial day party. Our first without Matt. The weekend brought a lot of firsts. First time I had to remove a drowned chipmunk from the pool, something Matt always did while I made disgusted faces from a distance. First time I had to tackle the issue of lawn damage/maintenance by myself, something Matt always did while I wore sandals and stayed out of the mud. It was the kind of weekend when I felt the waves of grief coming again and again, the kind of weekend when grief could have wrested away control of the story.

But it didn’t. The chipmunk was removed, with a disgusted face. The mud was trampled through, in the sandals (next time, sneakers; live and learn). The party wasn’t skipped, even though looking around sometimes all the kids and I could see was what was missing.

Last year, for a weekend, we regained control of our story. We’d lose it, again, obviously, to doctors and schedules and medications, but we had it then. This year, we also nearly lost control of our story. Somehow we didn’t. I’m sure we will—grief doesn’t like to be ignored—but what I’ve learned in the past year is that’s okay. Losing control isn’t permanent. There’s always a way to regain control of your story.

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