By Linda Williams
Life is made up of a series of experiences, isn’t it? All the good ones, the bad ones and everything in between – they combine to fill our lives and serve to make memories, lessons to learn from and more.
Certain experiences are milestones in growing up while others are markers in growing old.
For some people who live with a disability, many of the experiences that are commonplace for others are simply not possible or require a lot of pre-planning and sometimes additional costs in order to be achieved.
For this reason, ‘experiences’ are a thing in our house. Being a parent to a child with a disability, in this case, a muscle-wasting condition (Duchenne Muscular Dystrophy) I am witnessing our 7-year-old son transition from an able-bodied toddler through to a young man with weakened muscles. The condition is ending his ability to walk, his upper arm strength is lost, his lung function is challenging and the ability for his heart (the largest muscle) to beat regularly is becoming harder every day.
The reason experiences are a thing for us is that, as his condition progresses, I want him to have had the opportunity to experience everything he could possibly want in the same way that any one of his peers could have (with an occasional surprise should it arise).
Experiences can be obvious events or quite subtle moments. My son cannot raise his arms so I will lift his hand and put it on my cheek so he remembers what I feel like, or lift his arms and put them over each of my shoulders so he can still experience hugs from his mum. I have taken him on an ice rink in his wheelchair, so he feels what it is like to be out there. He has also been pushed around a bike track in his wheelchair as fast as I could go (not that fast, unfortunately). There have been other moments too: generous people at the dog park who offer to lift their big dogs so my son can pat them; my son has also gone indoor skydiving, whale watching, and taken part in skateboard lessons (seated in his wheelchair for that one) as well.
I find there is also a secondary advantage to these experiences. It can be summed up with the word ‘inclusion’. Inclusion in life really. When people take the time to include my son, they also enjoy the moment. He feels part of the environment around him when he can see himself doing what every other person does and can relate to what they’re doing.
And, that’s a great experience!
Duchenne Muscular Dystrophy is a rare and progressive muscle wasting condition. Right now there is no cure and there is stopping it. Boys with this condition may live past the teens. My blog – Another Duchenne Mum is about H’s journey and to raise awareness of this condition.
