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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 1 reply, 2 voices, and was last updated 4 months, 2 weeks ago by Ryan Berhar.

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      • #19913
        Brianna Albers
        Keymaster

        Hi everyone!

        Check out Alyssa’s latest column, “Why I View My Life As a Deck of Cards.” She compares life with SMA as a delicate house of cards. You can spend all your energy trying to build the perfect house, but you’re limited to the hand you’re dealt. When disaster strikes, and your house of cards comes tumbling down, there’s nothing you can do except to rebuild.

        I really like this metaphor, because it’s so true. As Alyssa says, we need to strike a balance between acknowledging the hand we’ve been dealt — and grapple with all the resultant emotions — as well as continue to build the house we want. It may not look like everyone else’s house, but they’re drawing from their own deck. All we can do is focus on the cards in front of us.

        How do you feel about this metaphor? Do you find it echoes your own circumstances?

      • #19937
        Ryan Berhar
        Participant

        I love Alyssa’s writing, but I’m a bit confused with this one. Two metaphors are referenced—a hand of cards in a poker game, and building a house of cards. These are two different metaphors, and they seem to run together here. There are certainly some good nuggets, however, like life being more about how one reacts to circumstances than circumstances themselves.

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