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    Traveling with a child is never easy. Traveling with a child in a wheelchair is an extra challenge. The first time Leah flew on an airplane, she was six months old, almost a year before she was diagnosed. We have always been a traveling family and once she was diagnosed, we were both hopeful and determined that it wouldn’t hold us back.

    I have always flown with Leah by myself, just the two of us. Call me crazy; it’s OK, I am. There are some things we have learned that have made it so much easier for us.

  • This topic contains 3 replies, has 4 voices, and was last updated by  Adnan Hafizovic 4 months, 2 weeks ago.

    • Author
      Posts
    • #19233
       Ryan Berhar 
      Keymaster

      Hey everyone, here’s Kala’s newest column.

      My Vulnerability Isn’t the Result of a Spiritual Awakening

      I think she does a great job of explaining some of the nuance of life with SMA. Physical vulnerability is out of necessity. It’s a way of life. That doesn’t necessarily mean that we’re also vulnerable in other ways, however. Can you relate? In what ways does SMA affect your vulnerability?

      • This topic was modified 4 months, 2 weeks ago by  Ryan Berhar.
      • This topic was modified 4 months, 2 weeks ago by  Marta Ribeiro.
    • #19237
       Halsey Blocher 
      Participant

      I can absolutely relate to physical vulnerability. I am dependent on others for showering, dressing, and using the toilet. And since I have nursing care, I have had to train a lot of new people in these aspects of my care. At this point, I’m pretty used to it, but it’s really not fun, especially since I’m a pretty modest person.

    • #19238
       DeAnn R 
      Keymaster

      Forced vulnerability I guess you could say. I do think it’s comical sometimes when I think about how many people have seen me naked. Honestly I don’t even remember some of them. It’s just something we have to deal with though. When people compliment how vulnerable or open we are I think it’s more a compliment on how we handle the situation. I don’t think they can imagine doing what we do, but of course if it was them they’d deal with it too.

    • #19241
       Adnan Hafizovic 
      Participant

      When you mentioned this DeAnn  I remember it and how much I was ashamed when somebody sees me naked especially when I was younger. But now I do not care anyway

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