Ella’s temperature rose overnight last week. She woke up with a sore throat and body aches, so she stayed home from school, which put a strain on the household because of her extra care needs. Lindsay, my wife, works as a children ministry…
One morning in August 2013, I woke up with a pain unlike anything I had felt before. It was excruciating, relentless, and in my mind, totally unprovoked, as I hadn’t done anything bad to my body the night before and I wasn’t sick. The worst part:…
I almost accidentally drank chunky coffee the other day. How’s that for the introduction of all introductions? I thought about easing you into it slowly in an attempt to avoid making your stomach squirm. I explored how I could go about this storyline in a manner that would…
Ella is curious. She seeks answers to the perplexing world of an 8-year-old, always wondering about the things she sees and experiences. She has a keen sense of people and their emotions. When fighting with her brother and sister, she is the one who often offers…
On Halloween this year, I dressed as the Marvel Comics superhero Daredevil. Blind lawyer Matt Murdock by day, and superhuman vigilante by night, Daredevil strikes fear into the hearts of his enemies as the guardian of Hell’s Kitchen. He is one of the most iconic…
There comes a point in every SMA patient’s life when someone asks, “Why are you in a wheelchair?” I like to think I’ve gotten pretty good at answering that question. I’ve done the research; I’ve looked up all the scientific terms; I’ve been through my fair…
I came up with the idea for this column at 5:45 a.m., when I’m usually just falling into a deep REM cycle. (Sleeping has never come easily for me.) I wish I could say I was up at that ungodly hour (mornings also never come easily to…
A couple times now I’ve touched on my surgery that didn’t happen at a hospital in Portland, Oregon. It’s an experience that was highly relevant to life with SMA and the therapy Spinraza, so it tends to jump to the forefront of my mind for column…
Ella is 8. Caring for her is a team effort: Dressing, bathing, toileting, and transferring are some of the tasks Ella needs help with. Alongside this physical assistance, Ella, like every child, needs support with her mental and emotional growth, confidence-building, schoolwork, and character development.
As a kid, I was notorious for dropping my cherished action figures on the floor. Instinctively, I would turn to my older brother Brian to pick them up for me. A little irritated that I had interrupted his marathon viewing of SportsCenter and “Cops,” he had…
