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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 6 replies, 5 voices, and was last updated 1 week, 1 day ago by Crystal.

    • Author
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      • #21897
        Crystal
        Participant

        Hey guys, so I just read Kevin’s latest blog post about the interactions he’ll never forget and it reminded me of the interaction I had with my cousin who just turned 5 years old in December. Carson (my cousin) and my uncle came over for Thanksgiving and while everyone else was in the kitchen eating, me and Carson stayed in the living room playing a “game” he made up using Uno cards cuz apparently he didn’t want to eat and I can’t eat. For his game, he kept the Uno cards in a stack and was drawing a card. Each number card he would count or I would help him figure out what it was, but apparently all the wild cards were considered bad in his eyes and he would stack them away from the good cards. Eventually he ran out of room for the wild cards and made a different stack next to me so that he could pass them to me so I could put them in the stack for him. The problem? I couldn’t reach the stack with my left arm like a normal person would so I had to use my left arm to help me pull my right arm over with the card in my hand and slowly put it in the stack. When Carson first saw me do that, he stopped what he was doing and stared at me while he seemed to be in deep thought. Then he started talking to himself saying, “It has arms… It has legs… It has a face… Soooo it must be human… Hmmm?” I couldn’t help laughing so hard I snorted, which made him laugh like crazy too. Then he hugged me like he always has done. I’m glad to hear that he considers me as human. Lol. He is precious. And hilarious.

      • #21898
        Kelly Miller
        Participant

        Crystal, I wouldn’t be surprised if Carson grows up to be the next Quentin Tarantino!

      • #21899
        Alyssa Silva
        Keymaster

        Hahaha! Carson sounds adorable.

        I definitely resonated with Kevin’s column. There are so many stories I could share similar to his (and yours!), but one that always sticks with me is when my little cousin had yet to learn I couldn’t walk. He’d always come over and dance with my mom in the living room. I’d lay on the couch, watching and singing along to the songs we’d play. But, he couldn’t understand why I wouldn’t join in. I’d tell him I liked watching, but 9 out of 10 times, he’d come over and pull my arm, trying to get me off the couch, yelling “Wyssa [Alyssa] dance! Dance Wyssa!” He must have been around 3 years old.

        Now I have a nephew who is 2.5 years old so I’m curious to see how he starts responding to my disability!

      • #21902
        DeAnn R
        Keymaster

        That reminds me of when my twin nieces were little (they’re 15 now.) All I had to do is break out the stern voice and they’d listen better than they would to others who actually could take away the toy or put them in timeout.

      • #21903
        Crystal
        Participant

        Lol, DeAnn, that was me with my brothers whenever our dad left me in charge when he left for a while, even though I was the middle child. Unfortunately, now my brothers know they’re stronger than me. 🙁 Lol.
        Kelly, I love Quentin Tarantino!
        Alyssa, the more we are around kids while they’re young, the more comfortable they are around us while they’re older. They’re adorable so I’m sure that won’t be a problem. Lol.

      • #21904
        Halsey Blocher
        Participant

        Crystal, that’s adorable! Kids really do say the cutest things!

        My niece is five as well. I remember there was one time (maybe about a year ago) when my told her she was going to help take me to the potty and she’s be right back. My niece immediately declared, “Halsey doesn’t need help going potty!” Now she thinks nothing off it, but at the time, it was pretty funny. She was just starting to use the bathroom completely by herself, and so she couldn’t think of why an adult would have someone go with them.

      • #21926
        Crystal
        Participant

        Awe that’s adorable, Halsey!

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