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    • #18344

      Happy Tuesday! I was recently approached by a company to discuss the resources that are currently available to SMA patients. It got me thinking about my relationship with the different resources that are out there. I only just got involved with the community a few years ago, largely because I didn’t feel like the resources were geared towards adolescents or adults.

      I wasn’t supposed to live past nine years of age, so I’m pretty much just figuring out this whole adulthood thing as I go along. I don’t really feel like there’s a lot of support for adults with SMA, maybe because our cohort is just starting to reach adulthood. Children with SMA absolutely deserve support too, but I do wish there were more resources available for our generation, particularly regarding higher education, career issues, and family planning.

      I wrote a column on the subject. Do you relate with anything I said? What kind of resources do you wish were available?

    • #18368
      Halsey Blocher
      Participant

      I definitely agree that there is not as much support for adults. I think it is probably just because there hasn’t been so many of us that have lived to this age before. We’re still learning what being adults with disabilities is like, and the world is still learning how best to help us.

      • #18426

        Yes!! Exactly. No one expected us to live this long, so now we’re throwing everything for a loop 😂

    • #18369
      Ryan Berhar
      Member

      Fumbling through the dark sums it up nicely. What helped me was getting advice from other SMAers who’ve already figured it out. That’s one nice thing about the forums here ironically.

      • #18427

        Same! It helps being in community with other adults.

    • #18379

      Hi, Brianna!  I think this is a fantastic read, and I would venture to say that many of us with SMA can relate to your voice throughout the column.  🙂  One thing I’ve noticed as I’ve journeyed through adulthood with SMA so far is that we often are the resources for society.  Our experiences shed light on different issues. Many people turn to us for insight into navigating life with mobility challenges & caregiving needs.  Whenever I’ve attended a social event involving parents of young kiddos with SMA, I’ve also noticed they strongly gravitate toward chatting up adults with SMA.  Many are so excited to be able to ask questions, even if only for a few minutes.  The questions just keep flowing.  And, there’s a recurring theme in their questions:  What will my child’s quality of life be like once they’re an adult?  Can they go to college?  How will dating be?  Will they have supportive friends?  It’s wonderful to be able to connect and share some experiences about the world of SMA, and I think you wrote an awesome perspective of what it feels like.  Fumbling in the dark at times, trying to find our way.  🙂

      • #18395
        Halsey Blocher
        Participant

        That’s a really good point Katie. I know as a kid I had (and still have) adult SMA role models that I turned to and looked up to. Now I’m finding that I am becoming one of those people for the next generation.

      • #18428

        That’s a really great way of looking at it, Katie! I know parents of recently-diagnosed kids have found my column and taken hope from it, which is SO fulfilling.

        If you don’t mind my asking: do you ever feel like a depleted resource? I often tire of being in the spotlight, as much as I want to help people in the community.

        • #18432

          Absolutely, Brianna!  Anytime we are in a position that requires giving of ourselves, we can feel depleted.  Our cup empties a bit, right?  It’s like we have this reservoir of wisdom juice, overflowing with knowledge and experience. And we’re scurrying around to everyone, offering our resource of nourishing goodness. Meanwhile, our own hearts and minds are becoming dehydrated.  Yeah, I completely understand what you mean. Sometimes, it’s difficult to feel like we’re part of this small community of SMA hardships.  I know my SMA mates can relate to how I feel about certain things.  But, when I try to be a resource for people who are able-bodied, I sometimes feel they just don’t “get it”, which compounds the feelings of depletion.  Does that make sense?

          In a former role, I was a support group leader for the MDA. I felt honored and fulfilled being able to help people connect and provide local resources.  I learned so much with an awesome group of people.  But wow, I felt drained at times.  Especially if one person or family shared a particularly difficult situation which they were experiencing. When I felt depleted, I found it helpful to divert my attention and allow myself to quiet that part of my mind with things that brought me happiness. And laughter – I’m big on laughter. 😉   Also?  It was helpful to simply admit when I was feeling sad or drained from something.  We don’t always have to be heroes and warriors just because we have a rare disease.  We can stop and acknowledge that we are worthy of support, happiness, and resources that improve our own quality of life.

          We are all blazing the trails, though.  It’s a beautiful thing.  🙂

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