One of my rules is that nurses cannot care for me when they’re sick. Although this creates challenges, I don’t want to risk exposure. Because I live with SMA, the repercussions of a virus or other cause of illness on my health would be severe. Another thing that creates…
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Countless events shape the course of our lives: marriage, career changes, parenthood, the loss of loved ones, and health crises, to name just a few. The list is almost endless. After eight years of marriage, my husband, Randy, and I decided we were ready to start a family. Overnight, my…
I love to volunteer. If I see a need that I can meet, I am eager to jump in. And if someone asks me to help with a project or service, I am quick to say yes. So much of my life with spinal muscular atrophy (SMA) requires me…
On a perfectly mundane February afternoon, my mom and I drove to downtown St. Paul, Minnesota. It’s a new ritual now that I’ve transitioned most of my care to Gillette Children’s Specialty Healthcare. Every six months or so, I spend the afternoon at their adult clinic, where I am…
There aren’t many guarantees in life, but if you live in New England, you can always be sure there will be a winter nor’easter. With these storms come snow, wind, and power outages. The local news outlets remind everyone to get their bread and milk before the shelves are cleared,…
I’m a lot of people’s favorite something. That’s not bragging, it’s just a statement of fact. Ask my mother who her favorite child is, or some of the nurses at my usual hospital’s neurology ward who their favorite patient is, or some of my friends who their favorite friend or…
My younger brother, Kevan, and I were both diagnosed at a young age with SMA, so we grew up with power wheelchairs and powerful imaginations. We lived most of our childhood in our own pretend play world, where we could be spies, horse farmers, and baseball players; we…
“Do you remember when Dad took us kite flying?” I asked my brother, Gabriel. We were on a train ride home from the Sands Theatre, where we’d just seen an international production of Disney’s live musical, “Beauty and the Beast.” “Nope,” he said. “I thought that was with the…
My goal in college was to become a special education teacher. I had a dream work-study job at a nearby elementary school, assisting in two special ed classrooms. My career plan derailed slightly when I married, moved, and resumed studies at a university without a special education department. Several years…
For the past two years, my friend Pam and I have attended Night to Shine, a special prom event held in cities around the world on the same night, created by the Tim Tebow Foundation to celebrate and honor people with disabilities. This year it takes place on Feb.
