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A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 8 replies, 4 voices, and was last updated 8 months, 1 week ago by Halsey Blocher.

  • Author
    Posts
    • #20621
      DeAnn R
      Keymaster

      I consider myself a fairly independent person.  As such I do what I can myself.  With SMA however, there’s just some things I need help with.  Rolling over at night being one.  Another is going to the bathroom.  Even though I don’t live with my Mom, I do stay at her house every other weekend.  At first it was because I could find help.  Now it’s more so we can do stuff together.

      Over the years I’ve trained myself to only turn once a night and to limit bathroom breaks.  While at Mom’s last weekend, I called her an extra time because my pj’s were pinching me and I couldn’t get back to sleep.  A rare occurrence, not a big deal.  My sister stopped over the next day (of course when I was going to the bathroom.)  Mom jokingly mentioned she needed more coffee as she got up an extra time because of a wrinkled shirt. Ugh, first it made me sound like a diva when it was so much more than a wrinkled shirt.  Second it made me look like a burden.  I know Mom was joking and doesn’t feel I’m a burden, but it sure gave that appearance.

      My sister has the uncanny ability to stop over just when I’m going to the bathroom.  She must think I go 20 times a day when in reality it’s two.   I don’t think she knew Mom was joking, so now she probably thinks I get Mom up at all hours for inconsequential stuff.  In her eyes it makes me look like a burden.

      I think about finding staff to cover those weekends.  It isn’t as easy for Mom to care for me anymore.  We both would miss that time together though.  What are your thoughts on my situation?

    • #20648
      Ryan Berhar
      Participant

      That’s just one of the sucky aspects of living with SMA. Relying on others for everything is the worst. I’m sure your sister understands, though.

      • #20675
        DeAnn R
        Keymaster

        Relying on others is probably my least favorite aspect of SMA.

        • #20685
          Ryan Berhar
          Participant

          Me too. I’ve thought that for a long time.

    • #20649
      Halsey Blocher
      Participant

      Definitely kind of sucks when family members make these little comments with the intent of being funny. I’m sure they have no idea that these things upset us, especially around people who might not fully understand the situation. If any able-bodied person had to lay on wrinkled pajamas without moving for several hours, it would be pretty eye opening I think!

      I don’t think you should give up quality time with your mom. It sounds like you’re pretty close and I think maintaining that relationship is important. Would any of your caregivers consider coming to your mom’s house on those weekends? And would your mom be okay with that?

      • #20673
        DeAnn R
        Keymaster

        Thanks for understanding Halsey.  We have had caregivers come to her house in the past, mainly when Mom had an injury, but she’s not really comfortable with it.  When the time comes I’ll probably have to just stay at my house and just maybe go out there for the day or find more activities to do at my house.

        • #20686
          Halsey Blocher
          Participant

          That’s too bad. I hope you’re able to find different ways to spend time together.

    • #20660
      Kevin Schaefer
      Keymaster

      It’s tough, especially when weekend care factors into the equation. In this scenario, I doubt it was your Mom’s intention to make you feel burdensome, but I get it. Anytime my parents or friends or caregivers get tired or frustrated, I just have to remind myself that it’s not me that’s the cause of their frustration. SMA can wear anyone down, and that’s outside our control. Don’t ever apologize for needing help.

      • #20674
        DeAnn R
        Keymaster

        It certainly wasn’t her intention.  I brought it up later, and she understood why I didn’t appreciate the humor.

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