• Sponsored Post

    Planes, Trains, & Accessible Travel With SMA

    Talk to your doctor to determine if you or your child is fit to travel.

    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.

  • Tagged: ,

    This topic contains 8 replies, has 4 voices, and was last updated by  Halsey Blocher 3 months ago.

    • Author
      Posts
    • #19299
       Crystal 
      Participant

      Am I the only one here that watches a ton of TED Talks?
      Me and Ryan were talking before about the reason why we are still here despite being in the conditions we are in, and he seemed to have accepted that there is no reason while I couldn’t – and I’m still finding it very difficult to. But I just watched a TED Talk in which a stage 4 cancer survivor talked about it. I cried of course. But now I think maybe I can accept it. I’m gonna have to, right? I mean, what reason could there be? I don’t know.

      Here’s the TED Talk if y’all want to check it out and share your thoughts on it: https://youtu.be/KZxPHqU5W4c

    • #19308
       Kevin Schaefer 
      Keymaster

      Thanks for sharing Crystal. I really enjoyed this video.

      It’s no doubt an impossible question to answer, but I like what this woman says about finding beauty in the midst of darkness. The last five minutes of her talk are especially powerful.

      There are no easy answers here, but know that everyone here can empathize with the “struggling with the why of it all” question. For me, it’s helped to just talk about this stuff with other people in the SMA community, and to think about all of the things I can still do in spite of my physical limitations.

    • #19320
       Crystal 
      Participant

      Yes, I was bawling my eyes out during the end of the video. It does feel a whole lot better to talk about it with y’all and know that you understand. The only thing that really helps me feel better is knowing that I can still help people somehow. I made a video over the weekend on YouTube where I talk about what its like living with SMA, but I want my next video to be about something more for people who don’t have SMA but still need help in some way – like maybe people who are contemplating suicide – I just don’t know what yet. Also, I want to write a screenplay about SMA that involves superheroes somehow but I am still working on that idea….

    • #19322
       Ryan Berhar 
      Keymaster

      This is about as deep a discussion as humans can possibly have, and certain aspects may go beyond the purview of this forum, but let me clarify my position. I definitely do believe I’m still here for a reason, but it’s a faith-based reason. I’m comfortable defining a purpose for my life without knowing why this or why that.The other day you said you wondered why you’re still here and others aren’t. That’s where things become unclear for me. As Walter White said, “Every life comes with a death sentence.” Everyone dies, some sooner than others. Some of us are born with a disability. Some people get struck by lightning and die. That’s just how life goes, and I don’t think there’s a “reason” for these things. If there is, it’s certainly beyond my ability to comprehend. Btw, I love philosophical talks like these. Always down to chat about this type of stuff!

    • #19324
       Halsey Blocher 
      Participant

      I didn’t watch the video yet, but I’ll try to remember to do that later. Without having seen it, here’s my thoughts: I 100% believe that everyone is here purpose, but like Ryan said, I don’t always know what that purpose might be. I think some of us are meant to make big changes in the world that land our names in history books, some are have smaller roles that might not ever notice or see the results of, and countless others fall somewhere in the middle of the two. Everyone’s purpose is unique. You might be impacting the lives of the people around you and the people who watch you videos more than you realize. My personal advice is that you shouldn’t accept that your life has no meaning or purpose, but that you haven’t figured out what is.

    • #19328
       Crystal 
      Participant

      Even if there is a reason, we may never find or understand it. We are not God. But I do think everyone is supposed to help out in some way, even if its really small. You know what they say, “To not help is to hurt.” The only way I can think of for us to help is through writing and other arts, which is interesting since those ways can really reach a lot of people – if you’re good at what you do.

      • #19346
         Halsey Blocher 
        Participant

        I think those are some perfect ways to make a difference!

    • #19349
       Crystal 
      Participant

      Yes, they are. and they are pretty fun too. though sometimes they are really frustrating – like when you can’t think of what to write to save your life. i have a severe case of writer’s block at the moment. lol

      • #19366
         Halsey Blocher 
        Participant

        Yes, writers block is extremely pesky. Maybe some of us could help you come up with ideas? Most of us are also columnists. What do you usually write about?

    You must be logged in to reply to this topic.

    ©2019 KLEO Template a premium and multipurpose theme from Seventh Queen

    CONTACT US

    We're not around right now. But you can send us an email and we'll get back to you, asap.

    Sending
    or

    Log in with your credentials

    or    

    Forgot your details?

    or

    Create Account

    Copyright © 2017-2019 All rights reserved.