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  • teri-taylor

    August 11, 2020 at 2:05 pm

    While I am not the one in my family with SMA, I embrace it with my 10-year-old grandson, Charleston!!!! I have to be honest that I was angry, hurt, mad at God, didn’t understand WHY, etc. when he was diagnosed as a baby. But let me tell you what — my grandson has taught me what unconditional love really is!!!! He’s changed my life for the better in so many ways. Without SMA, he wouldn’t be who he is, and I wouldn’t be who I am.

  • nikki

    August 11, 2020 at 5:51 pm

    Embracing SMA is a process. I’m 51 and was diagnosed at age 3 and I still have struggles with what I think I can do, should be able to do and in actuality can’t do. For my mature age, accumulating accomplishments is important in our society. But I’ve learned to accept that it takes me much longer to meet deadlines and be ‘camera ready’ than most and it can frustrate me because often times I miss opportunities. Dealing with challenges is more mental work then anything. I say this because I’ve learned that it’s more myself that places these inhibiting expectations because when I handle myself with grace and acceptance, the people around me embrace me with ease and reason. So being kind to ourselves in our disease helps the world around us love easily.

  • alyssa-silva

    August 11, 2020 at 11:25 pm

    I very much agree with what Nikki said. I have learned to embrace SMA, but I have bad days too. Trying to remember to give myself grace on those days.

  • deann-r

    August 12, 2020 at 9:40 am

    Thanks for all of the perspectives! I don’t really think that any of us are like, “Yay, SMA is great.” Not only can it be physically challenging as Nikki pointed out the mental challenges are just as trying. But like Teri says it makes us who we are. Alyssa, bad days are inevitable. I love how you put it, on those days give yourself grace.

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