I wish I could soften the sharp edges of this story. Every instinct I have screams at me to sugarcoat April 27, 2017. But to do that wouldn’t be fair to Matt’s legacy, his battle, or his story, which does get dark and heavy, and at some point I won’t be able to promise an upswing. How could I, given the ending?
I owe his story just the truth, no more and no less.
And the truth is, April 27, 2017 nearly broke me. It had been a week of living on edge and telling myself that Matt was fine and I was overdramatic. The kids were home because we were leaving for a long weekend away for my mother’s birthday. An electrician was at the house to fix the doorbell. Our alarm was going haywire. No one had packed a thing. The time we had planned to leave had come and gone hours earlier.
That day, it was just me. Whatever small effect the higher dose of steroid had conferred to Matt was gone when he woke up. He was as symptomatic as I’d ever seen him, with a healthy dose of steroid anger to top off his general state of confusion.
But somehow, I worked out the alarm (though it took me an hour longer than it would have taken Matt), figured out the electrician (who, for many reasons, must have regretted the day he was dispatched to our house), and packed the kids’ bags. I loaded almost everything into the car. We were nearly ready to go. Except…Matt’s travel bag wasn’t waiting by the front. I knew he’d been upstairs packing. I asked him. He pointed to the six or so plastic bags I hadn’t really noticed. I asked, “why did you pack in plastic bags?” He answered, “what else would I pack in?”
I know this seems small. And ultimately it’s probably not very different from trying to fill a water bottle with a cap on or forgetting how to use a spoon. But it was the earnestness of the question, the way he scrunched his forehead trying to puzzle out what he’d done that didn’t make sense, and the way I couldn’t recognize the blank expression on my sharp-witted husband’s face that broke me.
I inhaled against the crushing weight on my chest, told him his bags were perfect, and loaded Matt’s plastic bags into the car beside our suitcases. No glass shattering here. Matt asked why I was crying. I don’t know how I answered.
I know these days are hard to read; they were hard to live. And sometimes they seemed slightly hopeless. So the best I can offer during the darkest days to come, when no upswing is on the horizon, is to promise to show the moments of lightness and joy, the sparks of happiness that always appeared, and that always lit the way back to hope.