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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 3 weeks, 6 days ago by Alyssa Silva.

    • Author
      • #21328
        DeAnn R

        It’s difficult to measure progress when your life doesn’t follow that of a stereotypical person your age. My life certainly didn’t follow the norm. As Kala writes in her latest column, her accomplishments aren’t less important or meaningful just because her path looks different. Kala takes pride in her writing. Both published and not. She knows her process may not look like she’s hard at work even though she is. I know what it’s taken for me to get where I’m at in life. Some accomplishments are tangible like the article I wrote published in Just Labs magazine. Some things aren’t, like getting the dip back in the fridge without dropping it (yes, it’s an accomplishment considering the struggle.) Just because our lives look different and we might not go about things in typical fashion, doesn’t mean what we do isn’t important. What accomplishments do you take pride in?

      • #21341
        Halsey Blocher

        This is so true! Like Kala, a lot of my friends are engaged/married, having kids, moving out, and I haven’t done any of things. But I’m still making progress in life, just in different ways than they are. I also consider my writing to be a major accomplishment. It’s been a life-long dream, and it’s amazing that it has become a reality! My volunteer work is another big one. It’s been even more fulfilling than I ever imagined it would be, and I love seeing the impact of what I do. The one other one that I think that most of would agree on is just living and enjoying each day!

        • #21343
          DeAnn R

          That’s awesome Halsey. Your writing and volunteer work are great achievements. Yes, I think living and enjoying life is an accomplishment we can be proud of. We shouldn’t feel bad when our paths look different. I’ve come to terms with being single. Having kids isn’t in the cards for me and that’s okay. Although I have been able to move out, I know it’s not feasible for everyone. Again, it’s just a different path. Thanks for sharing Halsey!

      • #21351
        Alyssa Silva

        I totally resonate with what kala is saying. it makes me think of the phrase, “stay in your own lane.” I may not be reaching the conventional milestones of the average 29-year-old, but that doesn’t mean my accomplishments don’t hold as much weight. it’s easy to get caught up in this but I do my best to stay in my lane and follow down the path that’s best for me— even if it’s different compared to my peers.

        as far as accomplishments go, I’ve started a blog, discovered my love for writing, created 2 documentaries about life with SMA, established a nonprofit organization and raised hundreds of thousands of dollars for my disease, and a whole lot more. despite not reaching those conventional milestones of moving out, falling in love, etc (yet!), I’ve still made progress.

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