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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 4 replies, 3 voices, and was last updated 3 months, 2 weeks ago by Ryan Berhar.

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      • #20254
        Ryan Berhar
        Participant

        As a kid, summer was my favorite season.  I did not like school at all, so naturally, summer was a time that I cherished.  Since I graduated, however, summer has become my least favorite season. I thrive on structure, and summer is when structure goes out the window.  Typically, I am at my grandparents’ house Monday, Wednesday, and Friday nights, and at home with my immediate family the other four nights.  During the summer, this schedule is entirely disrupted. I can’t remember the last time I had a normal week. I don’t like going back-and-forth between houses anyway,  but it’s nice to at least have a schedule.  The change in schedule is primarily due to my family/caregivers traveling. I’m not able to travel much myself, so I often stay behind with whoever is not going somewhere. The point is not to complain about my inability to travel, or that I’m being left out, I’m just explaining the cause of the problem.

        We also have a lot more company in the summer, which also contributes to the schedule being more fluid. My siblings are also home from school.

        These challenges are always associated with summer, but this particular summer has been tough in other ways as well. I’m somewhat struggling with where I am in life. My two best friends both got married within a month of each other, which I’m sure you can imagine fills me with all kinds of emotions. I’m also looking into getting more work, which is a bit stressful.

        It’s been a difficult season, and I’m ready for it to be over. Football is almost here! Do you guys have similar struggles with maintaining structure during the summer?

      • #20255
        Crystal
        Participant

        Personally, I love AND hate summer. I love summer cuz it gives me more time to work on my screenplays and movie ideas. But after awhile I feel like I’m fading away since I’m not learning math or anything. I’ve always struggled in school, despite being a pretty curious person. I want to know so many different things, but sometimes its really hard for me to understand some of the simplest things. I love school cuz I have the opportunity to learn and grow, but its frustrating and time consuming. Summer is more flowing. In terms of structure though, I don’t have the same structure as I do during the school year but my days and weeks are still structured. That’s just how my whole family function best.

        • #20271
          Ryan Berhar
          Participant

          There are definitely positives and negatives to each season. Thanks for sharing!

      • #20273
        DeAnn R
        Keymaster

        Sorry summer is so stressful for you Ryan. I happen to love summer. Because I don’t have to get bundled up I can get out and about more often. Yes, my schedule seems to fluctuate more, but it’s easier to get openings covered when weather isn’t a factor. It seems like I can move better when I’m not cold too. My feet are actually pink instead of purple. Plus germs tend to take a hiatus during summer months.

        I dread that fall is almost here. Even though it’s a beautiful season I never know when the last nice day will be. Let’s face it pumpkin spice everything gets old fast. Winter by far is my least favorite. I pretty much despise every minute of it.

        • #20299
          Ryan Berhar
          Participant

          I definitely agree from a weather perspective. It’s just that that’s pretty much the only thing summer has going for it for me. I hate the cold, believe me, but that’s just one aspect of the seasons.

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