Life is typically made up of occasional, seemingly random thuds. Thuds are moments when we sit up and take notice. We don’t usually know what we’re noticing, but there is no mistake that thuds are significant. The first thud, as it relates to this story, occurred when my…
Ella has been singing with the Young Naperville Singers (YNS) for a few months now. Her singing voice continues to improve as she gains confidence. She sings around the house, while getting dressed, and in the shower. The kids at YNS have been practicing…
One would think it might be easier to get a lifesaving medication, but it’s not. I pursued Spinraza (nusinersen) for a time, only to stop. I’ve been keeping quiet about it because what if I don’t get it? It’s possible, even though I…
My computer screen stared at me as a wave of unread emails and messages flooded my inbox. I work in management, so it’s not uncommon for me to respond to dozens of messages on a typical workday. This is not normally a problem, but for some reason, I…
I’m staying indoors more and more on Halloween. The cold is taking an increasingly large toll on my body. I roll through the neighborhood with the younger members of my family when the weather is unseasonably warm, but that doesn’t often happen in northern Indiana. Instead, I’ve started passing…
In this season of giving thanks, I keep reflecting on the importance of gratitude. Gratitude greatly impacts our lives, but as someone with SMA, I’ve found the concept easier said than done. At the risk of sounding harsh, on some days I feel as though there is absolutely nothing in…
I’ve been working with elementary school kids for 19 years. Every fall, I catch a cold, but the illness is usually short-lived. However, the Casten household isn’t so fortunate. Two weeks ago, my wife, Lindsay, caught a cold, and she’s still fighting it as I write…
Progression is an odd thing. I find it difficult to measure the progress I’ve made in life. People my age, people I went to school with, are getting married, having babies, and buying homes. But my progression has always looked different.
Recently, I spoke with my friends Jim and Becky Berry on the SMA News Today Podcast. In late 2018, they lost their eldest son Carson, who was a college student with SMA type 2. Some of my faithful readers may recall…
The month of November kicked off eventfully in 1997 in the wee hours of the morning when our electricity went out. Jeffrey, our 5 ½-month-old baby with spinal muscular atrophy (SMA), relied on blow-by oxygen and an oxygenator for comfort, and the power outage rendered both…
