September 13, 2023
For us, being outside is important. It is healing, calming and all around one of our very favorite things to do as a family. Being on the mountain as a family was always a dream of ours and we wouldn’t give that up when Duchenne entered our world. Duchenne takes a lot from families…but time outside wouldn’t be one of them for us.
This winter, we partnered with Oregon Adaptive Sports (OAS) and got William on the slopes at Mt. Ashland. They made the process easy and stress free - I’m sure knowing how large the mental load is for parents with disabled kids. Parenting is full (and I mean full) of logistics and that is even more full when your child has a rare disease. I felt a deep appreciation for OAS, and these volunteers who give so much, even when they have parenting and life demands of their own. They were kind, patient, got down on William’s level, made jokes and always made sure he was safe, comfortable and having a good time. They named him team captain for the day, and he was thrilled to call the shots (and the turns).
On the day of our lesson, we were inspired and emotional. While I was so proud to have William enjoying countless runs on the mountain, it was simultaneously heartbreaking to watch these little rippers fly past me with parents behind. I won’t lie, I cried, wishing it was different for him and trying to swallow the unfairness of it all.
William is four, so a few questions popped up about why he isn’t on stand up skis, and while he had fun and declared it “the best day ever”, he also reminded me “when he is 6, he will be on stand up skis”. Maybe buddy, most likely not, but we remain hopeful.