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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 3 replies, 4 voices, and was last updated 7 months ago by Halsey Blocher.

    • Author
      Posts
      • #18638
        Kevin Schaefer
        Keymaster

        Hey everyone, here’s Michael Casten’s latest column: https://smanewstoday.com/2019/05/01/when-times-become-harder-gathering-support-is-essential/.

        This is a really sobering piece, but it speaks to the importance of having a powerful support system. And I hope for the best for Michael’s family.

        What do you and your family do in times like this? Who do you rely on for support and care?

      • #18675
        Ryan Berhar
        Participant

        Dang. Thoughts and prayers to the family.

      • #18684
        DeAnn R
        Keymaster

        As Ryan said, my thoughts and prayers are with them. Their situation kind of reminds me of when I was younger although our situation much less severe. My Mom had injured her back and couldn’t do my cares. I was a little bit older than Ella, and wasn’t as comfortable having Dad do my personal cares, so that was the first time we had outside help come in. I think initially it was weird for all of us having a stranger coming into the home, but in the long run it really helped Mom recover. It also gave me more conference as I got older that I could direct caregivers with my cares as I headed to college. Of course every situation is unique, but I wouldn’t hesitate to recommend to Michael to enlist outside help if it gets to be overwhelming for them.

      • #18757
        Halsey Blocher
        Participant

        Oh gracious! Prayers for the best possible outcome and pain relief! I agree with DeAnn. It may be wise to look into hiring some aids to help Ella so that her care is not dependent on one person. It can too much for one person to take on the entirety of their child’s care, and the exhaustion can impact you’re ability to care for that person. Having additional caregivers isn’t always fun, but everyone needs a break.

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