Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Henry’s the middle child and is 9 years old, surrounded on both sides by his sisters. He fits the…
Over the years, I’ve talked with many SMA individuals and people with other disabilities who crave more independence in their lives. Beyond the physical limitations that come with having a disability, the biggest frustrations have to do with finding resources to become more independent. Society doesn’t exactly make…
I’m lucky that I was diagnosed at a young age, too young to remember anything that happened. I was talking to my father about it the other night, how he and my mother sat shell-shocked across from the doctor, listening to explanation after condolence…
If you’re anything like me, then you are just as excited about the turn of the season that happened a few days ago. It is officially spring, here in the Northern Hemisphere of the world. Pretty soon, cherry blossoms will begin to bloom again, the sun will grace…
I envy my younger self. Throughout childhood, I was content pretty much all the time. In the race of life, I was on equal ground with everyone else. Sure, I had physical limitations, but they didn’t keep me from moving forward in life. I went to school…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series in which he explores how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. A smart little girl of 10, Ava gravitates to her friends more often now…
When I was a kid, my family used me to bump to the front of the line for the Haunted Mansion ride at Disney World. Despite my kicking and screaming because I was scared of the ghosts and creepy effects on the ride, my parents made me…
You know how sometimes a comment can stick with you? That’s been my life this past week. It was something my dad said a while back. I don’t even remember the context, though I’m pretty sure it was random, out of the blue. “You…
Caregiving is an important job. After all, people like me would not exist without them. In a way, caregivers are my heroes. There are not many jobs that dictate the well-being, or even the very existence of another person, but this one does. It takes…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series in which he explores how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Lindsay, Ella’s mom and my wife, is a vibrant woman whose beauty is surpassed…
