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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 2 replies, 2 voices, and was last updated 4 months, 2 weeks ago by Kevin Schaefer.

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      • #18385
        Kevin Schaefer
        Keymaster

        Happy Thursday everyone!

        Check out Michael’s latest column here: https://smanewstoday.com/2019/04/17/full-time-caregiving-taxing/.

        Michael does a great job here articulating just how many responsibilities that SMA parents and caregivers have. As someone who has SMA, I commend each of you for all of the things you do and sacrifice on a daily basis. I hope this post is cathartic for you all, and that it helps people better empathize with you.

        Can you relate to Michael? Do you have any strategies you use for dealing with caregiver-related stress?

      • #19759
        Krystal
        Participant

        I agree with this post. It’s hard. SMA sucks, despite the great treatments out there. No matter what, my child still has SMA, and will forever have it. We have been told over and over, “If you don’t use it, you lose it,” and I feel like this is correct even with treatment. Because of this phrase, it’s been hard trying to balance letting my child be a baby, and ensuring she gets what she needs for the day in regards to exercises, appropriate rest, and adequate nutrition. My husband and I both work full-time jobs and we do not work from home, so that adds on to the stress of trying to find someone who can care for my daughter appropriately.

        Not to mention I also have a newborn in addition to all this… I’m so tired haha!!

        • #19919
          Kevin Schaefer
          Keymaster

          It’s very overwhelming, especially early on. Feel free to vent anytime. We’re here to support you.

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