It’s not a secret that I’m not a big fan of winter weather. But that doesn’t mean I don’t like a few things about this time of year. Specifically, I love the winter holidays! Christmas has always been my favorite. I love watching my favorite Christmas movies and celebrating with family and friends.
With the magical day approaching, I’ve gone into preparation mode. Like many people, I’ve made my list, and I’ve checked it twice. I hope to accomplish many festive tasks this season, but my holiday preparations don’t look quite the same as the preparations of other people. Spinal muscular atrophy (SMA) never stops me from participating in my favorite holiday activities, but sometimes it means coming up with creative ways to carry out my plans.
I love picking out gifts for my loved ones, but I’m less than fond of fighting my way through crowds of holiday shoppers searching for the best deals. For some reason, people often seem oblivious to me trying to navigate the aisles in my large power wheelchair. It’s difficult to complete my shopping without getting bumped or having my tires come a little too close to people’s toes.
To avoid that, I do most of my Christmas shopping online. Online shopping has been growing in popularity for some time now, but it’s especially convenient for people like me. We don’t have to brave the cold and snow or the Christmas crowds. People with SMA also get sick easily, and doing our shopping from home helps to protect us from illnesses passed around this time of year.
In addition to online shopping, I am fortunate to have access to a local shopping resource. Every year, one of the staff members at Turnstone, a local organization that runs a center for children and adults with disabilities, puts together a holiday shop for clients in the adult day service program. She gathers an assortment of gifts throughout the year that she sells to us at a reduced price at the beginning of December. She even beautifully wraps our purchases for us! We all appreciate the extra holiday help, and I’ve found many gifts there.
Presents from the holiday shop come wrapped. But presents I order online usually do not, which means I must wrap them after they arrive. Wrapping gifts is not easy for me. I need an extensive amount of help. But I still like to do as much of it myself as I can.
I try to do most of the folding, but I always need help with cutting paper, tearing off pieces of tape, lifting items, and tying bows. Getting the shiny paper to bend to my will is tricky, and sometimes I need help with holding it in place long enough to tape it down. It often feels as though I’m wrestling with the paper instead of wrapping gifts in it. It doesn’t help that I have extremely small hands that aren’t very strong.
I know gift bags would be easier, but seeing the result of my hard work is too satisfying to pass up — even if my arms feel a bit like putty afterward.
Decorating Christmas trees is another popular holiday activity. There needs to be a place to put the presents I worked so hard to wrap, right? As a child, I enjoyed hanging ornaments on the lower branches of the tree. Now my weakened arms make it too difficult to lift most of the decorations, and my fingers lack the dexterity to secure the ones I can lift.
Instead, I have become more of a supervisor, watching as my family does the heavy lifting. I suggest places to put ornaments and scout for spots that look a little bare. I can be involved in the fun without worrying about dropping things or poking my fingers with ornament hooks.
Once my preparations are complete, it will be time to snuggle up by the fire with Christmas music in the background as I eagerly await my favorite holiday.
I hope you all have a merry Christmas!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.