After a long week, our family of four was reunited on September 17, 2017. Matt was home from the hospital and the kids returned from the camping trip—muddy, exhausted, and unbelievably happy.
I remember the moment G was dropped off. Matt walked down the stairs to greet his friend and thank him for taking the kids on the camping trip. He was unsteady on his feet. He confused a few words in the short conversation. I wondered whether his friend noticed or whether the subtle symptoms were only visible to me because I knew where to look. I remember hoping that his friend couldn’t tell. Matt’s disease, with all the accompanying symptoms, wasn’t a secret, but I knew Matt didn’t want pity or sympathy. He didn’t like his disease on display.
That afternoon was difficult. Matt’s headache and back pain returned with a vengeance. Duke told us the pain might last until the bleed resolved on its own. There was nothing to do, but wait. Duke had also advised against the stronger medication prescribed at the hospital. The rationale: a strong pain killer could cause sleepiness and confusion and we’d be left unable to tell whether the symptoms were medication side effects or tumor related concerns that needed to be addressed immediately. Matt’s only option was Extra Strength Tylenol.
It barely took the edge off his pain.
He struggled to connect with G and H. He mostly kept his distance from them, choosing to nap upstairs or sit quietly on the couch without engaging with them. A few times, when the pain peaked, his temper snapped.
That cruel transition I wrote about before, the erosion of Matt’s relationship with G and H, took a new painful turn on September 17, 2017. Before, he couldn’t play and they missed him, now he spoke sharply and they avoided him. They started to pull away from him as much as he’d pulled away from them.
I learned to navigate that new space between them, to calm Matt’s temper and redirect G’s and H’s attention, worrying always that it would feel to one like I was taking sides with the other, hoping always that things would be better in the morning.
I sat to write today’s post and found only a skeleton of a story to tell. September 17, 2017 is a quiet day as much as any of our days would ever be quiet again. The stillness of the story today made me realize the breakneck pace the story had started to take. Once again, the speed with which everything happened caught me off guard. I’ve been absorbed in the story. I forgot to look beyond the events and ask how.
I’ve said that one of my goals is to slow down the events of the year and find the moments that pivoted us even further from the path to happily ever after. I see those moments in the story of the past week.
That moment when Matt texted “I miss them already” and a part of my heart knew to pay attention. That hemorrhage, which swept in a month of 9-1-1 calls and hospital stays. That first time Matt looked at me and his gaze shredded my heart. Those were the moments that pivoted us away from happily ever after.
But in slowing down the story, I’ve also found the moments that kept us anchored in hope. The moment the doctors said they’d never seen a tumor disappear that fast and that completely. The moment Duke said the tumor treated with poliovirus was shrinking. The moment when Matt had texted “can u talk” less than twenty-four hours after I’d been warned that he might never want to text or talk again. Those were victories bright enough to cast away the darkness surrounding us.
The days were hard—stunningly hard sometimes—but real, true hope glimmered everywhere we looked. So we persisted.