December 24, 2017: Christmas Eve

One year ago today, G and H tried ski school while the adults tried to find a warm place to sit. A few friends who knew how difficult our days at home had been checked in to see how we were faring now that we were away from home.

I sent everyone a version of this text message: The kids are loving skiing and having fun. Matt is struggling, physically now too. He’s not walking correctly. I called the doctor today, and she increased his steroid dose, though I’m not sure it’s helping. But it’s so much better to have other people around. It makes such a difference to not be alone.

I don’t remember December 24, 2017. I have a photo of the kids waiting to start ski school. I have the text messages to my friends. But I don’t remember calling the doctor. I don’t remember how Matt was walking and what exactly made me anxious. I don’t remember why we decided to increase Matt’s steroid dose, where before we (the doctor and I) had decided to keep his dose steady and then work to taper the dose. I suspect the need to keep Matt physically stable—safe—outweighed all the concerns.

I remember only thinking how good it was to be with family. One year ago today, I didn’t know I needed help until I had help—four extra adults to step in with G and H, with Matt. In retrospect, it almost seems obvious—I should have called in for help weeks earlier. Then again, asking for help would have meant admitting I needed help, which would have meant admitting things I couldn’t quite admit about our life. (And, to be very honest, like so many others, I’m terrible at asking for help.)

Lately, in Post Hope, I’ve found myself writing every post while thinking of it in relation to what comes next. For example, as I wrote today’s post, all I could think was how I wished I could go back and tell the past version of myself that in exactly one month, on January 24th, I would see a MRI that would be burned into my mind forever; I would hear words that I could never unhear. I’ve found myself re-living moments in January—arguments with Matt and conversations with G and H—in a way I haven’t since Post Hope started. I’m not sure what that means, whether it’s a grief wave or simply a function of the upcoming one year mark, or both.

Maybe it means that I can’t escape the truth that the end of this story is coming, and that it will soon be time to stop living in the past and write the post-Post Hope. The post-Post Hope story, a story that is just emerging, with an as yet unknown ending, a story that from beginning to end requires a leap of faith and the decision to choose hope again.

The truth is choosing hope is harder this time around. I’ve seen hope blink out. I’ve seen an ending that is far from happily ever after.

But I’ve also seen the heights you can soar on wings of hope, the statistics you can defy and the battles you can win with nothing but an ember of burning hope.

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