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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, 3 voices, and was last updated 4 months, 3 weeks ago by Halsey Blocher.

    • Author
      Posts
      • #19857
        Ryan Berhar
        Participant

        Hey everyone, here’s Kala’s newest column. It has been a stressful year for her, but she’s still made a lot of progress. What stuck out to me was where she talks about her desire to help her family, but not being physically able to. This happens to me often. Not only am I unable to help, but sometimes I’m actually in the way, which is way more frustrating. Can you relate? What takeaways do you have from this column?

        Looking for the Good When I’m Feeling Run-down

      • #19864
        Rachel Markley
        Participant

        I’m really struggling lately with everything in this blog. I’m over not being able to help and not having enough energy for fun. The fatigue has improved since Spinraza but it’s still hard working full-time and having 11 hour days.

        • #19880
          Ryan Berhar
          Participant

          That’s definitely tough. What do you do, out of curiosity?

      • #19883
        Halsey Blocher
        Participant

        I can relate to wanting to help my family, especially in stressful situations. I try my best, but sometimes I want nothing more than to be able to give people a great big hug when they’re having a bad day. It sounds like also had some really awesome things happening too though! I’m usually an optimist so I tend to try to focus on the positives as well.

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