The holidays are when I spend time with family and friends, put off Christmas shopping until the last minute, and relentlessly make fun of Hallmark movies. While it’s true that Hallmark flicks aren’t as remarkably terrible and cultlike as 1978’s “The Star Wars Holiday Special” (even Mark Hamill hasn’t seen this turkey all the way through), I still prefer to watch heartwarming classics like “The Godfather.”
Still, amid all of the festivities and traditions one thing that makes the holidays a bit challenging is that my regular caregiving schedule gets interrupted. Like anyone else, my caregiver Randy needs time off. While he takes vacation days around Thanksgiving and Christmas, I have to rely on my parents more than usual.
My parents are seasoned veterans when it comes to taking care of me, but anyone with SMA will tell you that any kind of change in our routine can be irritating and difficult to manage. Additionally, my dad is a UPS driver, and this is the busiest time of the year for him. He works six days a week in December, and he has to help take care of me on top of that. It’s exhausting for anyone, and that is why I have to remind myself of several important lessons I’ve learned during the holidays.
I am not a burden
I don’t mean to be dramatic here, but I would venture to say that most people with disabilities wrestle with the idea of feeling burdensome at some point. I’ve certainly felt this way before, and I’ve talked with plenty of friends who share this feeling. It hits me when I have to wake my dad up to take me to the bathroom, or when my mom is busy and I have to interrupt her to move my hand a few inches. These moments happen, and that dreaded feeling of being burdensome is sometimes inescapable.
I could write an entire column on this subject, but the thing to remember is that no matter how tired my parents or caregivers might be at certain times, I know I’m not a burden. I have needs that others simply don’t, and that’s OK. I remind myself that if my parents get frustrated at any point, their frustration is directed toward the situation and not at me. My parents are superheroes, but they’re still human and they experience exhaustion and stress just like anyone else. Moments like these are more apt to occur around this time. If I’m tempted to feel burdensome during the holidays, just repeating the phrase, “I am not a burden,” in my head helps tremendously.
It’s OK that my care routine is time-consuming
My morning routine alone requires multiple transfers, chest physical therapy sessions, and help with everything from bathing to putting on deodorant. It’s a time-consuming process regardless of who’s taking care of me. But with Randy, it takes less time because he and I do this routine every weekday. He’s also younger and can lift me without any problem. As long as we don’t get distracted watching YouTube videos, we can get my morning routine done in less than an hour.
With my parents, it takes more time. My dad can lift me, though I much prefer using my ceiling lift with both of my parents. It takes a little extra time for transfers, but I feel safer and more secure in it, and it’s by far the best lift I’ve ever used. I used to dread how much time it would take, but I’ve come to be more patient with these kinds of things and accept that almost everything about living with a disability requires extra time.
Focusing on the things I enjoy helps
I have many reasons to be stressed during the holiday season. I have to coordinate caregiver schedules, stay on top of my regular work responsibilities, attend holiday parties, and make sure I get my Christmas shopping done in time. It would be easy for me to succumb to that stress and just spend the month sulking.
Instead, I choose to embrace this time of the year and all of its nuances. I go to movies and read comics like I always do, write for myself when I need to release emotions, and find ways to poke fun at everyday things. Case in point: This morning, I heard my mom’s phone ring in the other room while she was helping me in the bathroom. When she came back after checking to see who’d called, she remarked on how good my hearing was. Taking note of the fact that I have astigmatism and SMA, I said, “Well I am blind and can’t walk. I may as well have something that works.”
Goodnight, San Diego!
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.
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