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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

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      • #15284
        Kevin Schaefer

        I knew this month would be busier for me than usual, but in a good way. November is #NaNoWriMo (short for National Novel Writing Month), which thousands of writers participate in every year. It’s also when my local comic book convention takes place, which I’m stoked for. That’s happening this upcoming weekend, and my caregiver will stay with me while my parents go out of town. I’ll be moderating panels there, hanging out with friends and meeting creators. Cons can be tiring, but they’re always tons of fun.

        I’m finding that little things help me pace myself when I’m extremely busy. All weekend I was either writing, podcasting or hanging out with friends, but I still did things to rest and have down time. Yesterday morning I spent about 45 minutes reading a book before church, and it was incredibly refreshing to do that early in the morning instead of going straight to checking Facebook or watching some video. I felt better throughout the day as a result. I also went to bed at a decent time the night before, and slept alright on Friday as well.

        I go in for PT this morning after being off last week, and my appointment comes at a perfect time. I’ve been better at doing some exercises at home in my chair, and I’m looking forward to getting back in the pool. I feel more energized throughout the week when I have a Monday morning session.

        All in all, this is going to be a busy month, but so far I’m pacing myself. Taking on a loaded schedule and having SMA isn’t easy, but it is possible. You just have to take care of your physical and mental health.

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