Fall is my favorite season. It is a wonderful time of year from the time summer ends with warm sunny afternoons, cool crisp evenings and long shadows to the mid season with brilliant foliage, the smell of apples and oak leaves that amuse the senses. Even late fall is pleasant when most things turn from crimson and gold to mainly brown, the trees struggle to hang on to a few remaining brown leaves and the temperatures barely stay above freezing. Fall is a comforting season when people turn in their gardens, hunker down and prepare for winter. As much as I enjoy the season there is one chore I truly dislike undertaking this time of year. No, it isn’t raking leaves or washing windows. The chore I avoid is putting the side panels on the awning over the ramp in front of our house.
Installing the panels isn’t hard, although I wait until the last possible minute to lash them on and the cold sometimes makes my hands and fingers ache. The ramp doesn’t bother me, but once the sides are up, the awning just stands out like a sore thumb. It isn’t as though I need a reminder of how different my family is having two sons who have a physical disorder and use power wheelchairs for mobility. That stupid awning and the side panels with plastic windows is the exclamation point reminding me daily that we are not the same.
I don’t dwell on how Duchenne has infiltrated our existence and can at times define much of our family life, but all winter I’ll look at that green awning on the front of our house as an unnecessary reminder. I imagine I’m no different than most parents affected by DMD. Surely everyone in this community thinks some particular aspect related to this condition is especially annoying or irritating. It might be the time spent going to clinic, daily stretching or needing to use a big van to transport their son. For me, it is that awning on the front of the house with the canvas sides.
My mother-in-law told my wife the awning made our house look like a funeral home when she first saw it. She meant no malice, but I couldn’t help thinking to myself, “thanks grandma”. I suppose she’s right and maybe that’s part of why I feel this way about a simple canvas shelter that keeps the rain and snow off the ramp my sons use to get inside our house. I guess it’s really silly.
If I’m going to channel my frustrations on anything, an inanimate object is probably best. Just as there are silver linings in life there are also dark clouds. We couldn’t appreciate the good things if we didn’t have the occasional bumps in the road to help remind us to enjoy the better times. I will always like fall even though I know winter will soon follow and even though it means that’s when I install the sides to the awning over our ramp which reminds me that DMD is a part of my life.