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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 1 month, 1 week ago by Halsey Blocher.

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      • #21595
        DeAnn R
        Keymaster

        Being sick more holidays than being healthy makes it difficult to view the holidays as the most wonderful time of the year. Before Mom even learned my diagnosis she said I was sick often. At just a few months old apparently I had a terrible cold. Ironically that put it right around the holidays. As a good parent does, Mom made sure the holidays were enjoyable regardless of illnesses getting in the way. It’s likely the reason for my aversion to red turtlenecks, but she tried.

        At the first sign of a scratchy throat I’m doubling my dose of elderberry and making sure everything is in order for when it inevitably turns into a cough. As a kid that meant bronchial drainage, chicken noodle soup (with carrots that I despise) and a red turtleneck. I’m sure Mom was convinced the turtleneck had magical healing powers. Either that or the red along with green mucus made me look festive? I don’t know. Sometimes I’d miss out on holiday activities. If I didn’t feel up to decorating the tree Mom would be sure to save out my favorite ornament for me to hang up. I’m sure everyone appreciated that I placed it where I could roll right up to it and press the button to play Jingle Bells 20 times a day. Do you have holiday “sick” traditions?

        It just dawned on me why I’m an early-bird Christmas shopper. Several reasons really. One of which being to avoid germs. I can hear a cough from 3 isles over. Unfortunately sick shoppers are inevitable from November to January. In January the cold virus succumbs to the frigid temperatures and retreats until next cold season. Okay, that’s totally untrue wishful thinking, but I try to convince myself I can come out of hibernation to get in on post-holiday clearance prices. By then the isles are a little less crowded. Plus I don’t have to pay full price for faux Sherpa (my replacement for the red turtleneck.) Are you the shop early for Christmas type?

        Despite this being the most worrisome time of the year it can also be the best. Nothing beats expressing love and gratitude between family and friends. Even if it’s in the form of a red turtleneck. I hope everyone is having a wonderful holiday season and are avoiding those germs!

      • #21624
        Alyssa Silva
        Keymaster

        There was a lot I missed out on as a kid due to either being sick or just germs in general at Christmastime. I don’t know why, but I have this one vivid memory of being a kid and having to miss out on Christmas day festivities because I had a fever. Instead, my mom and I stayed home in our PJs and watched Miracle on 34th Street, and it really was just as magical as being with family. Something about being cozy and lazy on Christmas day just feels perfect haha.

      • #21632
        Halsey Blocher
        Participant

        Fortunately, I can’t think of a time where I have been sick on Christmas Day, but I’ve definitely been sick close to Christmas. There was one year when I had a respiratory infection so my mom brought my vent out to the living room so I could watch my favorite Christmas movie while sitting by the tree. (It’s White Christmas.) I was still recovering when so out of town family came to visit. I wasn’t up for much yet, so they just came over and chatted for awhile, and my cousins helped me open a couple of presents since I didn’t have the energy. I actually needed up having a nice time even though I was sick.

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