Treasuring the Little Things

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by Kevin Schaefer |

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My 3-year-old niece Lily sat next to me, absorbed in the pages of her “Frozen” coloring book. On my right, my dad also was busy coloring an elaborate picture for her and her baby brother. Back when Lily was born, my parents converted a small living room area in our house into a playroom. It’s filled with children’s books, a table with art supplies, and almost as many toys as I have in my home office. 

As the three of us sat around the table on a lazy Sunday afternoon, I contemplated whether or not to participate in this activity. I knew that Lily’s attention span would shift within minutes, and she’d be asking me to watch a Disney movie with her in no time. Still, a feeling of nostalgia crept over me, and at that moment I wanted nothing more than to pick up a colored pencil and start doodling. 

Due to the progression of my SMA, I lost the ability to regularly handwrite years ago. I now do all of my work on my laptop and phone. While I love the capabilities of modern technology, I do miss the sensation that comes with putting a pencil on paper. And while I was never an aspiring illustrator, I loved to draw as a kid. I’d fill pages with sketches and storyboards, and I frequently doodled at school whenever I got bored in class.

Recently, my maternal grandmother found some old drawings I did when I was 12, which she’d kept for sentimental purposes. I laughed and cringed when she texted me these images. Seeing them made me glad that I pursued writing comics instead of drawing them. 

My amazing drawing skills. (Courtesy of Kevin Schaefer)

Still, as I sat and watched Lily press multiple crayons against the paper in front of her, I wanted to be more than an observer. I decided to ask my dad for some pencil and paper, and just give it a go. It was unlikely that I’d have much success, but I refused to spend this time scrolling through social media feeds and emails on my phone. 

Since starting Spinraza almost three years ago, I’ve done regular occupational and physical therapy evaluations to track the treatment’s effects on my body. One of these tests requires me to draw a line through a maze on a piece of paper. The first time I tried this, I was unable to finish. No surprise to me. Eventually, however, I managed to not only complete the task but also to do it with more ease each time I went in for an evaluation. 

With this in mind, I sat in the playroom with my colored pencil, eager to create something by hand. It took more energy than I anticipated, but I managed to draw a small stick figure on the edge of the sheet of paper. I was trying to draw Olaf from “Frozen,” but it came out more like a snowman reject from the Rankin/Bass Christmas movies. 

The ability to freely draw and handwrite is something I miss. As I said, I’m grateful for modern technologies, but I also don’t want to have to stare at electronic screens all day. Even though it’s difficult for me to turn the pages, I still push myself to read physical books as much as possible. Likewise, I wish I could still handwrite more than a few letters or draw more than a tiny sketch without wearing out. 

Alas, living with SMA requires constant adaptation. While I can’t move my hands like I used to, this scenario reminded me to still treasure the little things.


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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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