SMA News Forums Forums Our Community Parents​ ​and​ ​Caregivers​ Answering Difficult Questions from a Child With SMA

  • Answering Difficult Questions from a Child With SMA

    Posted by kevin-schaefer on November 7, 2018 at 11:00 am

    Read Michael Casten’s latest column about answering tough questions from his daughter Ella:

    I know when I was younger, I would find myself asking questions like these to my parents. I think it’s pretty common, as kids are curious by nature. What I’ve found as I’ve gotten older is that instead of questioning why I’m the one with SMA, I’ve come to embrace it as a part of me. It doesn’t define me, but it’s also led me to meeting a lot of great people and it provides me with a unique perspective on things. I love my life, and I embrace the abnormalities that come with having SMA.

    For those of you who are parents, I just want to commend you for all you do. I also want you to know that questions like the ones Michael brings up are almost impossible to answer. Just know that adults with SMA like myself are out living our lives every day. Things get better, and I’m always open to answering questions about growing up with SMA.

    Have you had conversations like this with your children?

    ryan-berhar-2 replied 5 years, 7 months ago 3 Members · 5 Replies
  • 5 Replies
  • adnan-hafizovic

    November 9, 2018 at 9:02 am

    First thing that I remembered when  that I m different from other kids was when I had maybe three years.I was sitting in park with my mom and I watched other kids how they run and play soccer,and I had so big wish to stand up and run with kids.My luck was that I can long years to crawl and like that climb at stairs.And I never asked other about my condition,because I was aware of my conditions,but I asked myself how other kids are health and only I m not.

    • kevin-schaefer

      November 9, 2018 at 9:35 am

      Thanks for sharing. Yeah I think that kind of realization hits us at a certain age when we’re kids. I think asking questions is just natural.

  • ryan-berhar-2

    November 9, 2018 at 9:50 pm

    “Why?” Such a reasonable question, yet rarely is there a satisfying answer.

    • kevin-schaefer

      November 15, 2018 at 2:32 pm

      Sure. But like I said I’ve found myself dwelling less and less on this question as I’ve gotten older. It helps to focus on the positive aspects of my life, but also to think of the ways in which my life has been positively impacted by having SMA. For instance, in college I met a ton of great people because I had to ask strangers for help all the time. That’s something that wouldn’t have happened if I was able-bodied.

      That’s just one example, but I have countless more.

      • ryan-berhar-2

        November 15, 2018 at 7:08 pm

        Agreed. It’s best to just not ask why. I’m just saying it’s understandable, especially for an eight year old.

Log in to reply.