Ella is the youngest of the three Casten children. Ava, her sister, is 12, and Henry, her brother, is 10. Ella, who turned 9 in June, comes right behind Henry. My wife, Lindsay, and I planned it that way so that they would share common interests…
Columns
It’s a normal day. Well, mostly a normal day. My parents come into my room at about 4 a.m. to tell my sister and I that they love us and that they’re heading out. They have a three-hour drive to the airport, and then an hour flight. Their first flight.
My summer was a roller coaster of ups and downs. Amid all of my adventures and celebratory occasions, I also dealt with loss and my fair share of chaos. That’s life with SMA in a nutshell. June began with a rush of excitement. I took a…
As my 22nd birthday rapidly approaches, I almost can’t comprehend it. The thought of my birthday has seemed surreal for the past several days. To most people, turning 22 probably isn’t that big of a deal. You don’t get to do anything new. Your friends start to tease you about…
I always get hit with a wave of back-to-school nostalgia when September creeps up on the calendar. The days of shopping for supplies, picking out a first-day-of-school outfit, and being excited and anxious about the year ahead are a distant memory. In today’s column, I’m going to share one…
When my husband, Randy, and I decided to expand our family, I promptly became pregnant … and miscarried. Optimists, we tried again. And again. Meanwhile, we returned to school for teacher certification and accepted teaching assignments in Columbia, South Carolina. We were blessed the following summer with…
We rolled up to the emergency room for the second time this month. The first time, Ella had broken her left foot. Now we were there for the other foot. This particular afternoon, Ella had been playing with her brother, Henry, and his friends. She…
In 2017, writer Keah Brown created the hashtag #DisabledAndCute. To Brown’s astonishment, this phrase sparked a viral social media movement. As the hashtag flooded her Twitter and Instagram feeds, Brown saw countless individuals with disabilities embrace a message…
Lying on my couch one day in late August, I thought about how the previous weeks had been unexpectedly challenging. I was watching one of my favorite (albeit trashy) reality television shows. I’m not big into TV, so when I watch it for hours something is up. When my mother…
Music helps us to express our feelings, dreams, and aspirations. Ella has been to several Young Naperville Singers rehearsals and is loving it more and more. She can’t wait to get there and doesn’t want to leave when the session is over. One evening, my…
Recent Posts
- New study finds muscle stem cells are key to treating SMA
- The blessing and burden of relying on medical machines
- I’m not proud of it, but sometimes I miss being in the hospital
- Evrysdi shown to stabilize motor, lung function in adults with SMA: Study
- How the Winter Olympics can remind us of the power of imagination
