Columns

Rediscovering My Love of Lego Star Wars

In my mind, Luke Skywalker was in love with me. For context: I was never much of a Lego girl. But I was a “Star Wars” girl. It stood to reason, then, that the Lego Star Wars games were right up my alley. I loved everything to do with…

How Someone Handles My Hands Makes a Difference

My mom and I enjoy treating ourselves to a relaxing afternoon of mother-daughter bonding at the nail salon from time to time. We don’t have one specific salon that we always go to. While there are some that we like better than others, we often pick one that’s in an…

Overcoming Roadblocks to Chase My Dreams With SMA

For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved the process of concept to creation, the thought that went into the garments, what inspired the…

Adios, April! Hello, May(hem)!

April brought with it more than showers in the water department. Our son Matthew and his family visited our daughter and son-in-law, Katie and Paul, on Easter weekend. Besides the beach, they had access to a nearby swimming pool. As our granddaughter Clara, 6, dipped her toes into the pool,…

There’s No Success Without Rest

As you get older, proper rest tends to become an appointment you have to schedule. It’s something you have an abundance of when you’re an infant, but its presence steadily decreases in your life once school, work, and social engagements take up increasing space. I’ve witnessed this phenomenon among my…

Life Advice From My Hippie SMA Friend

I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media presence…

Healthcare Is Rarely a Walk in the Park

When it comes to healthcare, I’ve had remarkably good luck. There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my young, still-developing mind, undeniably had it out for me. (A classic…

Within 3 Years, This Column Has Grown and Changed

Somehow, it’s already been three years since I began sharing my story with you in this column. It’s been a beautiful, heartfelt adventure that I’ve thoroughly enjoyed. But I have to admit that when I invited you to pull up a chair back in 2019, I didn’t really…

Adapting to My NJ Feeding Tube

Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ tube only three weeks earlier, and everything about it seemed so foreign. My mother stumbled through…