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    • #17686
      Leah Leilani
      Keymaster

      Each year my mom’s MD continues to weaken her muscles, making it more difficult for her to be able to do everything she used to in celebration of the holidays. She can no longer decorate multiple spots in the house, host gatherings with the family and cook feasts for both Christmas and Thanksgiving.

      This last Christmas, it was decided by myself and my parents that we would pair down significantly on our Christmas decor in order to keep my mom healthy and have energy for the things that matter more. We will no longer have a Christmas tree that is not pre-lit and she is purging our ornaments and only keeping the most sentimental ones.

      Have you had to make the tough decision to pair back on your Christmas decorations, activities and/or traditions to prioritize the most important parts of the holidays?

    • #17698
      Sara
      Participant

      The same thing has happened over the years at my parents’ house because my mom just can’t do some things anymore, like decorating a tree, and my dad doesn’t care to do it. They have a prelit one that my mom loves, and they don’t decorate it anymore. They also don’t put out most of the other decor at this point. When I’m home, I do as much as I can for her, but I live 3k miles away and am not consistently home for Christmas anymore. I go all out for Christmas, but there are things my husband has to do for both putting things up and taking them down as well as getting things in and out of storage. I’ve told my mom in the future, they should just come stay with me for Christmas (I would pay for their flights), so she can get the enjoyment of all the decor without having to do any of it herself. I think she’s seriously considering it after this past Christmas.

      • #17718
        Leah Leilani
        Keymaster

        Sara, what type of MD does your mom have? My mom is a very festive person and I know she would have a difficult time without any decorations. Has your mom considered hiring a friend to decorate for her?

        • #17739
          Sara
          Participant

          We both have FSHD. I know she likes to have some decor up, but she’s stubborn about asking people for help even though family/friends would help if she asked. When I’m at home for Christmas, I usually do a lot of it and ask my siblings (none of them have MD) to help me with the things I can’t do. She just hates asking for help.

        • #17740
          Leah Leilani
          Keymaster

          I completely understand not wanting to ask for help. Especially when it comes to hobbies because no one has quite the same vision you have.  I’m sure she thankful that she has you and I do hope you guys can spend the holidays together next year so she can get her full of decor and the Christmas spirit. My dad has also tried to help my mom decorate but, I’m sure just like your mom, my mom is very particular and wants things done they way she would do it (as anyone would).

        • #17746

          My friend just moved to the same city as me, and she also has FSHD. So I went to her place, which was so cute! I noticed she didn’t have any of her art and some of her stuff was still in moving boxes. We both are physically disabled but have our ways around it. So I decided, with her permission, to get my friends over. We had some libations, ate pizza, put on a movie/music, and got some of her boxes unpacked and things hung on the wall. When you have the same disease, you notice things others don’t, such as her parents. This disease is so tricky, but together we can come up with ways to do almost anything!

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