Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”
In the near future I’ll be participating in a Courageous Conversations panel. One of the questions is, “What do you feel is the biggest thing that “fully-abled” people take for granted?” My first thought is the ability to do what you want when you want to without giving it a second thought. Does that make sense? What else?
Everything in our lives must be planned. How different it must be to not think one tiny bit about the “task” of getting in bed tonight. I have no idea what it must feel like to just go lay down and start to fall asleep the moment you are ready.
Being able to unconsciously move yourself in the middle of the night when you’re uncomfortable instead of the uncomfortable feeling getting so strong that it wakes you up and you have to either suck it up and wait until morning or wake someone in the house, if you can.
I totally echo Rachel’s! What I wouldn’t give to take a shower in private! Another one is the ability to do things that a lot of people don’t actually enjoy doing like housework. I would love to be able to do my own laundry. Or there are times where I look at my bedroom floor and realize that it needs vacuumed, but I don’t want to interrupt what other people are doing to ask them to do it.
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