This patient advocate's journey is full of emotional highs and lows as she navigates raising three sons with Duchenne muscular dystrophy. Despite the uncertainty, every victory, no matter how small, is a celebration of resilience and hope.
I’m more than a caregiver, but it took a recent life change for me to realize that. I’m a mom to seven children I share with my husband, Jason, including three of our sons — Max, 19, Rowen, 15, and Charlie, 13 — who live with Duchenne muscular…
I think about things deeply, rolling ideas around in my head until they make sense. My creative side, the writer, likes to wonder in this way. And as an introvert who naturally tends to keep everything to myself, writing is often the way I can express ideas and feelings after…
Life feels busy, which is no surprise to me. My husband, Jason, and I share seven children: Lexi, 23; Max, 19; Chance, 17; Rowen, 15; Charlie, 13; Mary, 10; and Callie, 2. Max, Rowen, and Charlie live with Duchenne muscular dystrophy (DMD). Our lives are busy year-round. This year…
“Kidney stones!” my 13-year-old son, Charlie, exclaimed when I asked him what I should write about this week. My husband, Jason, and I have seven children: Lexi, 23; Max, 19; Chance, 17; Rowen, 15; Charlie, Mary, 10; and Callie, 2. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD).
I have three teenage sons — Max, 18, Rowen, 15, and Charlie, 13 — who have Duchenne muscular dystrophy (DMD). They have met several sweet milestones over the years, and I love celebrating them. I’ve always made a big deal about birthdays, for instance, as well as decorating the…
The seasons are changing in central Nebraska. The leaves have turned yellow and orange, a beautiful contrast littered across the green lawns and familiar streets surrounding my home. The mornings are brisk, and I’ve finally pulled out my warmer sweaters and fuzzy socks. I’ve been drinking pumpkin spice coffee for weeks!…
I’m a mom to seven children: Lexi, 23; Max, 18; Chance, 17; Rowen, 15; Charlie, 13; Mary, 10; and Callie, 2. As part of that job, I’m also a caregiver to Max, Rowen, and Charlie, who all have Duchenne muscular dystrophy (DMD). Additionally, I’m a chronic DIYer (do-it-yourselfer). Yes,…
I sat in the front row of the football stadium, watching my second-oldest son, Chance, 17, play football. It’s his senior year, and I’ve been front and center at each game. That front row has the accessible seating, which helps because Chance has three brothers living with…
What’s a typical week as a caregiver of three sons with Duchenne muscular dystrophy (DMD) like? As a primary caregiver to Max, 18, Rowen, 15, and Charlie, 13, my honest answer is that I wish I knew! There is no typical week. I also have four children who…
Get regular updates to your inbox.