I’ve played music since I was 5 years old. My first professional playing job was as an accordionist in a Polish polka band when I was 13. My accordion at the time was a full-size Excelsior 120 bass model that weighed about 35 pounds. My professional playing career took a…
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“ICE” is a widely used acronym for “in case of emergency.” In today’s fast-paced world, many people have ICE contacts on their phones and folders on their computers that tell others who to call in the event of an emergency. Those of us living with chronic illness can and…
My heart is walking a tightrope. I’m a 45-year-old wife to Jason and mother to our seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. Three of our children, Max, Rowen, and Charlie, are living with Duchenne muscular dystrophy (DMD). This…
I’ll be straightforward about caregiving: It’s exhausting. I’m the mother of seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. I’m also a caregiver to Max, Rowen, and Charlie, who have Duchenne muscular dystrophy (DMD). You are catching me during a challenging…
One thing I was born with, aside from my facioscapulohumeral muscular dystrophy (FSHD), was narrow feet. As part of a working-class family, where money always seemed to be in short supply, my feet became an added expense that my mom combated by being a thrifty shopper. If she saw…
I’ve been married for 11 years. Before then, as I grew up with what I eventually discovered was limb-girdle muscular dystrophy, I learned a lot about life, perseverance, and relationships. During my 20s, I had long relationships with a couple of women with whom I thought I’d possibly spend…
The Lunar New Year has always been a time of reflection and renewal for me. This year, though, it was bittersweet because my longtime caregiver plans to return to her home country in a few weeks. With her departure on the horizon, I scaled back visits to extended family during…
I read a quote the other day on Facebook: “When you are raising babies, you feel how long the days are. When raising teens, you feel with every single bone in your body how short the years are.” Days later, I still carry those words with me as a mom…
About a month ago, I came home from playing with my church’s music group at a nursing facility. We played a doubleheader, doing a set in the memory care wing, then another in the personal care area. Because of my facioscapulohumeral muscular dystrophy (FSHD), I’ve stopped doing back-to-back…
Rediscovering my creative self has been one of the most fulfilling yet challenging parts of my journey with Duchenne muscular dystrophy (DMD). A few weeks ago, I started an exciting adventure with Wildly Creative, a 14-week arts and wellness program run by the Singapore theater company Wild…
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