Columns

Kicking off fresh creative ventures through social media

Despite the significant health challenges I face as a person living with Duchenne muscular dystrophy, I’ve come to realize that creativity can thrive in the most unexpected places. One such place is social media. My girlfriend, Amanda Yip, and I recently embarked on a short-term project with Blind…

FSHD progression requires me to lighten my music rig

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…

Caregiving sometimes feels like walking a tightrope

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…

A week in the life of an overwhelmed caregiver

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…

It started with shoes, but now everything is too heavy

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…

To a parent, the years always seem too short

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…