Christmas for us (our family of four) usually meant a lazy morning in pajamas followed by a trip to the movies and Chinese food for dinner. Christmas one year ago today meant ski school for G and H in the morning while the adults sat in the lounge restaurant and then a movie in the hotel’s rec area.
The increased dose of Dexamethasone the doctor had ordered hadn’t helped in any significant way. Matt still looked unsteady and off-balance when he walked—though no worse. His cognition hadn’t improved. But his temper—
I texted a friend one year ago today and told her that Matt was being too hard on the kids and I didn’t know how to stop him or shield them. She asked how G and H were handling his anger and I said they’d begun to ignore him. That cruel transition. Not only had they stopped asking for Daddy to play, but they’d stopped acknowledging him, too.
A fact that broke my heart. Because the truth I believed was that Matt was simply trying to find a way to interact with G and H. The truth I believed was that some part of Matt desperately wanted to be with G and H—talk and engage and play with them—but a crucial connection had been fractured by the tumor, and he no longer knew how to do that. And in place of that crucial connection was that anger, easy to grasp.
I knew that half (or most) of the problem was the Dexamethasone. Increasing the dose of the rage-inducing steroid certainly didn’t help. But we were walking a tightrope, trying to find a balance that wouldn’t tip us too far onto one side. We (maybe just I) had to balance Matt’s anger against the modicum of stability it brought him. I’d seen him fall once—we’d been lucky he walked away with only a scar.
At 4:54 p.m., I texted Matt: We are downstairs watching a movie. Any interest?
We (G, H, Matt’s parents, his sister and brother-in-law) were watching The Wizard of Oz. I remember walking upstairs after I sent that text to find Matt, to make sure he knew how to make his way down to the lounge. I remember watching him walk (with a fair amount of unsteadiness) down the stairs and settle into a seat vacated for him by his brother-in-law.
I remember wondering if Matt knew it was Christmas, if he remembered all those Christmases we’d spent at the movies—pre and post kids. I remember wondering if our story, our memories, were still a part of him, and (or) whether they’d return when he did. In Post Hope, I remember realizing one of the most surprising secondary losses was missing the person who shared my memories, realizing I was the sole keeper of our origin story.
Lately, in Post Hope, I’ve found myself sharing stories about Matt with G and H—nonsense stories about dates we went on to Korean BBQ restaurants when he ate too fast and places we traveled and got lost despite a map. G and H devour the stories, turning over the details and savoring the trivialities. For them, the stories give back some of the father they lost to brain cancer. For me, it’s a chance to keep our stories alive, ensure that I am not the only keeper of our stories. For all of us, it’s a chance to ensure the bad memories never diminish the good.