Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series by interviewing Ella’s grandmother. In this series, Casten sets out to explore how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. A woman who is the matriarch…
Editor’s note: Columnist Michael Casten begins his “Family Perspectives” series by interviewing Ella’s grandfather. In this series, Casten sets out to explore how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. A native of Indiana.
SMA affects the entire family. Sometimes it’s obvious, and sometimes it’s not. Either way, each involved individual must navigate the disease, alongside its implications, and figure out a way to cope. Child or adult, male or female, parent or sibling; the…
Ella sits in her wheelchair crying. Her mom is right there with her holding her hand. I walk into the room and stand looking at the two of them. I figure out they are in a deep conversation as Lindsay waves her hand at me.
It doesn’t happen often, but it does happen. Ella had the pleasure of being invited to a friend’s house to play after school. The trip to her friend’s house was a mere one-minute drive, and packed in the car along with…
Each morning, either my wife or I help Ella get dressed. During the school week, my wife has the responsibility, and on weekends, it falls on me. Every night, I bathe Ella and get her ready for bed. We’ve developed quite a routine for…
Surrounded by kids, friends from school, camera pointing at them, masks on, and backdrop chosen. A birthday party is in full force at a venue called Selfie Party Fun in Naperville, Illinois. A full array of activities was going on, most of which Ella can partake in,…
“Whoa, Daddy, Daddy!” Ella exclaims as I sit her on her bath chair. “Whoa, whoa, Daddy!” Ella says as I sit her on the toilet. “I’m gonna fall!” Ella offers as she sits on the couch. Now that…
Ava and Henry slept over at a friend’s house across the street. They had Grandma and Grandpa pick them up from school. They thought about Ella and asked how she is doing. They knew Ella would come home from the hospital with a boatload…
The healing process is long and arduous. Positioning is critical, medications are imperative, and positive energy is vital. Spine surgery requires bravery, determination, and stamina. Ella returned home from spine surgery six days after she was admitted to Lurie Children’s…
