By Chris Hunt
Declan’s not quite 4, and I’m pretty sure he doesn’t understand that his dad is dying.
I’m sure he realizes that things are a little different with his father. The rest of us wander his world with little in the way of fanfare—we arrive on our own two feet and, a while later, we walk out the front door and go away.
His dad stubbornly persists with the walker to move about the house, but he’s given in to the idea of the wheelchair when he’s out in the world. And Declan seems to understand that just fine. Perhaps it’s just the luxury of being able to see his old man every day, or the fact that this is what counts as “normal” to this sweet little boy with a grin that lights up the lives of so many.
My brother, Declan’s father, has ALS—he was diagnosed just over three years ago, not long after Declan was born. It was devastating news, the realization that my brother not only knew what was going to take him from the rest of us, but, within a fairly tight window, when it would happen. And we’ve watched over time as he’s slowly and painfully declined.
It’s a nightmare, this disease. It halts the connectivity between the brain and the muscles, and over time the muscles just simply go away via atrophy. Once a tall, thin guy with a big, toothy grin, Brice is now hunched over and … skeletal. He doesn’t smile as much.
The simplest task is a mighty endeavor. The muscles in his tongue are fading, so now, even speaking is difficult. Eating hurts. Swallowing leads to choking and coughing, wracking his body with a violence that brings tears. Supplemented by a tube directly into his stomach, it’s now a race to keep up with his caloric burn. Energy drinks. Milkshakes. Beer. When I visit my brother at his home in suburban Denver, it’s all about fat and calories.
And, of course, it’s about Declan.
This last visit, as I drove through the fast-food lane to load up on strawberry milkshakes, I saw a sporting goods store just up the hill. I popped in and bought a $22 telescoping fishing pole, complete with a thumb-release reel and a handful of bait hooks, lures and soft plastics. Declan’s house backs up to a little urban pond that teems with burly carp. The pond is one of those low spots in the city where grimey stormwater ends up. There, it feeds some pretty impressive algae blooms and, of course, the carp that live in the pea soup. That carp live here is no surprise, but it’s also home to a hearty blue heron, and handful of geese and dozens of ducks that come and go over the course of the average day.
A paved walkway winds like an asphalt ribbon around the pond’s exterior, and there’s a pretty fancy playground within sight of Declan’s house. It’s a great place to be a kid.
So, after I helped get Brice situated on the back deck, Declan joined my son, Cameron, and me on the banks of the pond. I put a piece of leftover beef from a Chinese food lunch on the hook and tossed the line into the pond, half expecting it to be gobbled up immediately by one of the gnarly carp in the pond, and half knowing that the odds were long. Declan sat between Cameron and me, peppering me with questions.
“I think we’re gonna catch a big fish, right?” he both declared and asked, stretching his arms wide. I looked across the pond and on the back deck of the house, where my little brother painfully raised an arm and waved.
“I sure hope so, buddy,” I said. “But even if we don’t, this fun isn’t it?”
“Yeah,” he said quickly. “I like fishing.”
The three of us hung out on the bank of the pond for a good hour before Declan got a little bored. Cameron offered to take him over to the playground, and Declan beamed.
“Yeah!” he yelled. “I want to show you the slide!”
The two wandered off, and I was left alone, sitting on the grass holding a cheap fishing pole baited with leftovers and remembering days that weren’t unlike this one all those years ago. My brother is three years my junior, and, as kids, he and I would often ride our bikes down the parkway in south Denver to a similar little urban pond where we’d bait hooks with doughballs and catch as many carp as we wanted. And, of course, if the fishing was slow, we’d lean our poles against the big willow tree near the pond and hit the playground with zest.
No, this day wasn’t far removed from those days. I sat manning the rod while Brice rested on his back deck watching his toe-headed son wander off to the playground, smiling and laughing all the way.
I lifted my hand and waved across the pond. Brice waved back.
I think he was smiling.
Chris Hunt is the national editorial director for Trout Media. He lives and works in Idaho Falls, Idaho.