“In the Shadow of Huntington’s Disease”
Note to Reader: This is just a snippet of a story in progress, one chapter in the book Robin is currently writing about her experience living with and later losing her mother to Huntington’s Disease. Bracketed information is given to provide background from earlier chapters
I had lived in the same white house on the hill my whole life. It had a weedy brick walk that led to our red front door, and a gravel driveway with a basketball hoop right in front of the barn.
And there were bushes too, framing our front yard. They were twice my size and had round red berries that I was never, ever to eat. They lined our property on all sides, pausing only at our driveway to offer entry onto our quiet country road.
It got tarred and graveled each summer, but our road had no lines and no sidewalks. I learned to ride my bike on that road. And on my bike, I met most of our neighbors, especially those who had horses.
Pet and Patty lived a half mile down the road.
Their paddock was surrounded by a wooden fence and reinforced by an electric one too, but the latter was never needed, never once on. I’d muck their stalls and feed them apples, brush them down and pick their hooves. I’d spend my afternoons imagining they were mine, and then fill their giant water trough before I had to bike back home.
Once I tried to saddle Patty, but only once. She was well past 20, older than me and in some ways, smarter too. When that saddle was on her back she would suck in so much air that no matter how hard I pulled the saddle strap, each attempt to mount her met me with a saddle swinging down her side.
Patty didn’t like the saddle. Bit nor bridle either. But then, she didn’t really need them. She was gentle and kind, grandmotherly in her way, but she couldn’t be bothered with all that equipment. Patty’s preference was a pair of lead ropes; one clipped to each side of her harness and draped across her neck was all she needed. So I learned to ride her bareback instead.
The sky was heavy and grey that spring day.
Lush, unruly grass grew outside the paddock, but the earth inside was worn. Pet and Patty had walked a wide circle just inside the fence, pounding it down over the years with their pacing. And the middle of their paddock was equally meager – if there’d been any sweet spring sprouts, they’d already munched them to nubs.
I climbed on Patty’s back that day and she was content to walk, slow and steady around the arena. We passed the garden, and the gate then walked the evergreen tree line. Around and around, again and again, she walked, gently rocking me to the rhythm of her hoofbeats.
My thoughts were adrift and soon my mind turned to what I’d been careful not to ask.
“What am I going to do?”
There was no going back; Huntington’s Disease was happening. My mom was going, and in some ways, she was already gone.
Tears pricked my eyes. Then they flooded.
“What’s going to happen to her?” I wondered, “And what’s going to happen to me?”
“You’re supposed to be there. Can you see me? Do you care?”
At some point, the sky started crying with me. Under a soft sprinkle, I continued to ride; the dirt from Patty’s brown coat caked against my bare knees as she plodded around and around her paddock.
And we cried.
We cried until my tear stained face was streaked with the wiping of dirty hands. We cried until my shirt, my shorts, and even poor Patty were dampened not only by the drizzle but also with the stickiness of my own snot. We cried until my soul felt somewhat lighter and my spirit somehow supported.
Then circling the arena once more, I got off sweet Patty. I grabbed her an apple and a few extra oats, then nuzzled her neck one last time and left.
It was nearing night as I rode my bike the half mile home. The half-mile back to my life – back to my emptier house [because of divorce] and my too-full visits [with my Mom], back to middle school and homework, back to church and chores and friends, not at all knowing what would come next.
I had no answers. I hadn’t been offered any.
But He’d given me enough to go back.
Related Post: Chapter 40: Wedding Wishes
If you are interested in learning more about her story right now, check out some of Robin’s earliest posts on the topic:
In the Shadow of Huntington’s Disease: How’s Your Mom
In the Shadow of Huntington’s Disease: Will You Be Tested