Have I ever told you that my significant other, Andy, has Becker muscular dystrophy (BMD)? Or that we met as kids at MDA Summer Camp? We did, indeed. Our hometowns sat about a two-hour drive apart. We stayed connected and remained friends throughout our teenage years but never…
Columns
The Castens are a family of five: Mom (Lindsay), Dad (Michael), and three kids (Ava, Henry, and Ella). Ava is 13, Henry is 11, and Ella is 10. We have two dogs and a bunny. I am a full-time elementary school teacher and have been working…
“I want to know, can you show me/ I want to know about the strangers like me.” These lyrics from Phil Collins’ “Strangers Like Me” play during an iconic scene from Disney’s “Tarzan.” As Tarzan and Jane swing through the jungle,…
My family has a saying: “It’s always an adventure with us.” It originated with Katelyn, an honorary member of the Albers household and my first personal care assistant (PCA). “It’s always an adventure with you,” she once said. I don’t remember the context — it could’ve been anything from…
Ella just finished fourth grade and will be entering her last year at elementary school in the fall. She loved fourth grade and learned so much. She’s a bit nervous for fifth grade, but she’s up to the challenge. Ella has been at the same…
What follows is possibly the most difficult column I’ve ever written. Since 2020 has a recurring theme of being a never-ending dumpster fire for everyone, I suppose this bit of news was inevitable. A week ago, my family and I said goodbye to my service dog,…
One of my favorite writers, Leo Babauta, is known for his work on mindfulness and simplicity. His blog, “Zen Habits,” is one of few newsletters that I intentionally keep up with. My personal resource database is full of Babauta’s articles — a testament…
For many years, Cure SMA, formerly known as Families of SMA, has organized an annual conference that brings together members of the SMA community from around the globe to learn and connect with each other. Given the current situation, most people were not surprised to…
As I’m sure most of us can attest, the world is a messy place right now. It is impossible to ignore. While I have never experienced anything as unprecedented as these times, I have experienced the messiness of life with SMA. I’m finding myself leaning on past experiences to help…
One month after our baby Jeffrey was diagnosed with spinal muscular atrophy, I met Cindy Schaefer on an SMA message board. Her son, Bionews Services columnist and forums director Kevin Schaefer, was diagnosed with type 2 SMA a couple years before that. During our…
