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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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      • #19798
        DeAnn R
        Keymaster

        On Monday my perspective piece will be included with the latest Flash Briefing. Here’s a sneak peek. Do you find it easy or challenging to go with the flow? I’d love to hear your thoughts and opinions.

        Recently I was shopping with my Mom. I take every opportunity I can to get out of the house and go shopping so yes, I still shop with my mother. We were browsing through JoAnn’s, a craft & hobby store, and I saw a beach themed shadow box that matched my décor. Since I can’t get to the tropics I bring the tropics to me, plus it was 75% off. What drew me to it was the phrase inscribed on it, in my teal color no less, which said “Go with the Flow.” Sometimes this is a difficult concept for me, being the type A personality that I am, but when those situations arise that are out of my control I remind myself, go with the flow. Plus it’s a lot easier than fighting the current.
        I’m a planner. My days are usually scheduled out as to when my PCA’s get me up, what I want to wear, my appointments etc. My local transportation requires scheduling a day in advance, so for the most part spur of the moment trips are out. When something does come up, like getting invited to a movie or something, needless to say it can throw me for a loop. That’s not to say I’m not game though. So when the current shifts, I do my best to shift with it. It might take some finagling to find a ride and rearrange my schedule, but it’s worth the hassle to have a little fun. If it doesn’t work out I’m sure to let them know maybe next time and advanced notice would be great.
        Going with the flow doesn’t mean I don’t need to be prepared. Last week my daytime PCA called out sick three days in a row! Although it is frustrating I have a plan in place for situations like this. Depending on what day it is I know which backup PCA’s I can most likely rely on. I might have to change up what I wanted to accomplish for the day as each PCA has different strengths, but as long as my basic needs are met I can deal with it.
        Although I’ve improved at riding the current, I still do what I can to have a smooth ride. For my last two Spinraza injections I’ve had transportation glitches. Of course I had no choice but to go with it and in the end everything worked out. Next time however, I’m trying a different transportation company. Fingers crossed it will be smooth sailing.
        Next time I feel frustrated about how things are going I can look up at that shadow box and just think, OK, go with the flow, the current will take me exactly where I’m supposed to be.

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