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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 7 replies, 4 voices, and was last updated 9 months, 3 weeks ago by Kevin Schaefer.

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      • #17217
        Brianna Albers
        Keymaster

        Happy Valentine’s Day, everyone! If you’re anything like me, you probably have mixed feelings about today. I don’t have an issue with the holiday itself, but it can sometimes be difficult watching the people I love go on fancy dates with their partners. I usually try and stay off social media for that very reason. I completely understand why people like to post about it, but it’s better for my mental health if I keep my distance.

        I woke up today in a bit of a funk—half because I didn’t sleep well and half because of the holiday. But at one point my PCA’s daughter, who’s a little over two years old, wrapped her chubby little fingers around mine and said, “You’re my first friend and I love you.” She had no idea it was Valentine’s Day, so she wasn’t just saying it because of the holiday. Really, I like to think she said it because she knew I needed to hear it, and more than once to boot. I love you! I love you!

        Wherever you’re at today, I’d encourage you to take a moment to look at those around you. The love you feel for them might not be the passionate, romantic love that we’ve come to associate with Valentine’s Day, but it’s love all the same. It can be hard to accept that the love you have isn’t necessarily the love you might want, but I hope you’re able to find some comfort in the people you care for. We’re all in this together!

      • #17225
        Halsey Blocher
        Participant

        How sweet! Glad you got to have this precious little moment!

      • #17229
        Ryan Berhar
        Participant

        I’m staying off social media as well. Out of sight out of mind haha.

        • #17337
          Brianna Albers
          Keymaster

          I totally get it! Hope V Day was at least a lil bearable for you. 💜

      • #17246
        Kevin Schaefer
        Keymaster

        I love this topic!

        I have mixed feelings about Valentine’s Day and the whole dating environment as well. On the one hand I’ve been on good dates and I have no problem putting myself out there, but on the other I’m at the age where everyone is all over the place with careers and relationship goals. Friends are moving for work and what not, and it’s hard to keep up with people when things could change instantly. For instance I met a girl last year, but she’s moving soon. It’s not as feasible for me to just pack up and move. I have a good setup here, and I like where I am.

        Still, I think it’s important to just have confidence in this area. I know it’s a cliche, but there are a lot of people with disabilities who are in great romantic relationships. Do you know Danielle Sheypuk by the way? She’s a renowned expert on dating and disability, and she has SMA. I’ve interviewed her before.

        Also great story about your PCA’s daughter!

        • #17338
          Brianna Albers
          Keymaster

          That’s a really great way of looking at it! For me, I think I struggle the most with putting myself out there. I live about 30 minutes from the city and don’t necessarily want my parents to drive me, which makes it difficult to attend events or really be social at all. Can I ask how you meet people?

          I haven’t heard of Danielle, but I’ll definitely look her up now! I’m always looking for advice 😂

          • #17350
            Kevin Schaefer
            Keymaster

            So I still keep in touch with a good number of friends from college, since I met so many people there. Since graduating, I’ve met a lot of people through hanging out at my local comic shop and going to conventions. I go to about 3 or 4 cons a year, all in-state. I’d like to go to DragonCon in Atlanta, Georgia at some point.

            My other big community is the SMA community. Between going to conferences and local events, I’ve met some great friends.

            Dating-wise, I’ve met people through friends and gone out with girls I met in college. I’ve been stuck in the “friend zone” in a lot of these situations, which is fine. I’m glad that I have a lot of strong friendships. Online dating wasn’t really my thing when I tried it, but I may give it another try at some point.

            And yes Danielle is awesome! She was one of the first people who really encouraged me and others with disabilities to date. I met her at a conference one year and heard her speak.

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