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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 6 months ago by Adnan Hafizovic.

    • Author
      • #19233
        Ryan Berhar

        Hey everyone, here’s Kala’s newest column.

        My Vulnerability Isn’t the Result of a Spiritual Awakening

        I think she does a great job of explaining some of the nuance of life with SMA. Physical vulnerability is out of necessity. It’s a way of life. That doesn’t necessarily mean that we’re also vulnerable in other ways, however. Can you relate? In what ways does SMA affect your vulnerability?

      • #19237
        Halsey Blocher

        I can absolutely relate to physical vulnerability. I am dependent on others for showering, dressing, and using the toilet. And since I have nursing care, I have had to train a lot of new people in these aspects of my care. At this point, I’m pretty used to it, but it’s really not fun, especially since I’m a pretty modest person.

      • #19238
        DeAnn R

        Forced vulnerability I guess you could say. I do think it’s comical sometimes when I think about how many people have seen me naked. Honestly I don’t even remember some of them. It’s just something we have to deal with though. When people compliment how vulnerable or open we are I think it’s more a compliment on how we handle the situation. I don’t think they can imagine doing what we do, but of course if it was them they’d deal with it too.

      • #19241
        Adnan Hafizovic

        When you mentioned this DeAnn  I remember it and how much I was ashamed when somebody sees me naked especially when I was younger. But now I do not care anyway

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