I’ve had a conversation with my son Rowen, 13, that we continue to revisit, and I feel like it’s something all parents raising kids with Duchenne muscular dystrophy deal with on some level. How do we teach our children to advocate for themselves? My three sons with Duchenne all…
I set aside time every week just for me. Every Monday for an hour, I sit in a small chapel at my church. I use the time to read, pray, reflect, or sit in silence. This hour of power fuels my week. I’m currently reading the book “The Return…
This column is my love letter to the cough assist machine. I love the assistive device and what it does for my three sons, Max, Rowen, and Charlie, who live with Duchenne muscular dystrophy (DMD). Twelve years ago, I had no idea what the heck a cough assist machine…
My family has had a hectic week. It started out lovely; the entire family, all nine of us, spent a beautiful, springlike day together at the zoo. By Sunday evening, however, we had kids with fevers, coughs, and runny noses. At last count, four of us have come down with…
The adjective “rare” refers to an event, situation, or condition not occurring very often, not found in large numbers, and consequently of interest. For example, Duchenne muscular dystrophy (DMD) is a rare disease affecting approximately 1 in 3,500 male births worldwide. Years ago, on one of the first…
My husband and I have four sons, but I spend most of my energy in this column writing about the three who have Duchenne muscular dystrophy (DMD). I often wonder what the chances are that three of our four sons have the disease? When my oldest son, Max, was diagnosed,…
Living with a rare disease like Duchenne muscular dystrophy is more than doctors’ appointments, medicines, and wheelchairs. It affects every aspect of my family’s life. When I started writing this column, I was afraid I’d have trouble finding something to write about every week, but was encouraged to write about…
January is birthday month at our house. We have four birthdays in January. That’s almost half of our family celebrating their arrivals on the planet in the same month. Our newest addition, our 3-week-old daughter Callie, was born on Jan. 9, joining Rowen, who turned 13 on Jan. 21; Charlie,…
My family stands out. I’ve shared that with you before. The sheer number of children is enough to make us different. But three boys with Duchenne muscular dystrophy (DMD), often seen in their wheelchairs, make us even more for the eye to take in. Standing out was hard…
My marriage is one of the most important things in my life. Shortly after my sons were diagnosed with Duchenne muscular dystrophy (DMD), I heard a staggering statistic about the divorce rate among DMD parents. Issues like financial strain, stress, exhaustion, depression, and grief can create problems in the…
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