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I have been writing here about my family since August 2021. My husband, Jason, and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (Â鶹Éç). In my first column,…

The death of my dear friend Timothy Chan last month still affects me deeply. A couple weeks ago, I stood at his memorial, speaking about a friend who had lived fully despite the barriers associated with a lack of awareness about Duchenne muscular dystrophy (Â鶹Éç) here in Singapore.

My son Charlie has recently been unable to get into his power wheelchair on his own, and I know I am watching him lose the ability to ambulate, as I did with two of my other sons. Charlie, 15, like his brothers Max, 20, and Rowen, 17, lives with…

One problem dealing with a progressive disease like facioscapulohumeral muscular dystrophy (FSHD) is that there’s no way to predict the pace of disease progression. I think this is true for the aging process as well. In my case, it may also apply to the joint deterioration I’ve experienced following…

Last Saturday, I lost a dear friend of mine, Timothy Chan, who had Duchenne muscular dystrophy. He passed away in the hospital in the morning, days after he had been admitted with a respiratory illness. The unexpected news from his parents shocked me, as I had caught up with…

Everyone recognizes the blue and white signs featuring a figure in a wheelchair that adorn certain parking spots. I call him the wheelchair guy, and he allows me to park close to public building entrances. The sign is an international symbol of disability. Of course, many disabled people are able…

This past winter in rural Nebraska was mild, with no real snow and only a handful of very cold weeks. But as it has gotten warmer and the grass starts turning green, I very much appreciate the arrival of spring. My children, who will be out of school for summer…

Last week was a busy one for me. In addition to my normal activities, I took field trips on Tuesday and Thursday, looking for solutions to some of my recent struggles related to facioscapulohumeral muscular dystrophy (FSHD) and other health issues. I’m really struggling to get around our…

I have always been an open book about my life. I am a writer, caregiver, and mother living in the Midwest with my family. My husband and I have seven children: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie…

Last Saturday, I attended “Les Misérables: The Arena Spectacular” with my girlfriend at Marina Bay Sands in Singapore. This landmark resort includes a luxury hotel, a shopping complex, and a performing arts theater that hosts international productions. A musical based on the novel by Victor Hugo, “Les Misérables“…