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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 Lisa.

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      • #17953
        Brianna Albers
        Keymaster

        Happy Friday! I wanted to share an anecdote from a Facebook group I’m a part of because I think y’all will appreciate it.

        One of the group members—who incidentally has SMA as well—started a discussion about dating and disability. She basically asked people if they’d be comfortable dating someone with a disability, and even touched briefly on caretaking (i.e., how would they feel if their partner needed full-time caregiving). I’m usually wary about these kinds of conversations because they evoke a lot of discomfort and sadness in me, but so far there have been a lot of great responses. Not everyone has said they’d be up for it, but those who aren’t were quick to acknowledge that it’s something they’re working on.

        In my experience, it can be difficult to be vulnerable about stuff like this. I often feel that people pity me when I talk about dating and disability, but then stuff like this happens, and I’m reminded that difficult conversations are important, because they encourage people to broaden their horizons and consider things they normally wouldn’t. All this to say that advocacy occurs in small, everyday conversations, even when we’re sure it doesn’t. We never know what impact our actions have!

        Is this something you can relate to? What does the topic of dating and disability bring up for you?

      • #18015
        Adnan Hafizovic
        Participant

        I love honesty in love relationships, and if a person does not want me, I like to directly tell him that he or she does not see himself in a love affair with me. And we with SMA  need to have great support from family and friends that we also need someone who will love us and whom we will love.And most of our parents are overprotective and this is one big problem.

        • #18059
          Brianna Albers
          Keymaster

          That’s a great way approach! Honesty is generally the best policy. And I think it sets an expectation for other people when we’re direct about our needs, even if it’s difficult to talk about sometimes.

      • #21323
        Lisa
        Participant

        Thank you for this thread, it is giving me so much strength and courage. I had joined the forum hoping to find resources to guide me through my infrequent but intense bouts of caregivers depression. Thanks.  I will hold this close.

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