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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.

  • This topic has 3 replies, 4 voices, and was last updated 1 month, 2 weeks ago by DeAnn R.

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      • #21092
        Brianna Albers
        Keymaster

        Hi everyone! Hope you all had a great weekend!

        Alyssa recently celebrated her 29th birthday with some friends and was reminded of a hospital visit several years prior. In her latest column, she reflects on what the memories brought up for her. Instead of focusing on health problems, Alyssa turned her attention to the friends she was celebrating her birthday with — the friends who stayed.

        I’ve been lucky in that the friends who “left” didn’t leave because of SMA. (Or maybe they did. Who knows?) But I find a lot of wisdom in Alyssa’s words. Inevitably, people will leave. You can try and fight it, or you can focus on the people who stuck with you through the good times and bad.

        Who are the people who have stuck with you? 

      • #21113
        Ryan Berhar
        Participant

        This is something I’ve thought about. I have had some friends or family who have “left” in a geographical sense, but they didn’t abandon me personally. Life will inevitably force people down different paths, but it’s still possible to stay connected these days.

      • #21114
        Halsey Blocher
        Participant

        I absolutely love this one! I also went through a major hospital stay many years ago and it is definitely something that really tests friendships. I found that some of the people that I thought were my closest friends were the first ones to take a back seat in our relationships or even leave completely during the stay and long recovery process. But I also found some amazing friends that I didn’t really realize I had who absolutely stepped up to the plate and have stayed there for nearly ten years. It’s really amazing how these kinds of situations show you who your true friends are. It’s one of the few good things that came out of my experience.

      • #21122
        DeAnn R
        Keymaster

        Yes, it’s nice when you know people who will stick with you through thick & thin. This kind of made me think though of some of my hospital stays. Sometimes the only time I see some people is when they visit me in the hospital. On one hand it’s nice they’re concerned, but on the other why bother visiting me there when they can’t visit me at my home.

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