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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 2 replies, 3 voices, and was last updated 5 months, 1 week ago by Halsey Blocher.

    • Author
      • #19583
        Kevin Schaefer

        Howdy everyone!

        As I write this, my caregiver Randy and I are sitting in an outdoor bar at the Disneyland hotel. We’re listening to a pair of musicians playing Honolulu songs, and the weather here is perfect.

        It’s serene now, but we did encounter some trouble yesterday. Though our two flights went pretty smoothly, I wish I could say that my chair left the airport unscathed. Unfortunately, the airline folks did do some damage to it.

        Despite our best efforts to protect each piece, someone managed to drop the chair on its side. Fortunately, it’s still fully functional, but the right armrest is pretty bent. I can drive fine, but I can’t get my tray on. This makes it difficult for me to use my phone, computer, or read. Granted, once the conference starts tomorrow, I’ll be too busy to do those things anyway, but it’s still frustrating.

        Anyhow, I’m here now, and I’m enjoying myself. I’ve already run into friends, and I look forward to meeting a lot of adults with SMA all weekend.

        Also, I went to Star Wars: Galaxy’s Edge last night, and I bought a lightsaber! Just look at this beauty…

        [caption id="attachment_19584" align="alignnone" width="300"] Contribute by Kevin Schaefer[/caption]

        I just wanted to give everyone an update, before the conference chaos ensues. Hope everyone has a great weekend! Talk to you all next week.

      • #19592
        DeAnn R

        Sorry to hear about the mishandling of your chair. Unfortunately an all too common occurrence I hear. One more reason it would be nice to stay in our chairs for travel. Glad it wasn’t worse though.

        Nothing goes better with a robotic arm than a light saber! Sounds like you’re having a great time.

      • #19594
        Halsey Blocher

        Wish I was there! I can’t wait to hear about the rest of you Disney/conference adventures! Hopefully nothing else happens to your chair and you can get it fixed easily when you get home!

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