Columns

3 Little Boys at 5 Months, 5 Years, and Almost 5 Years Old

In the fall of 1996, as my husband, Randy, battled a stressful job situation, our surprise pregnancy packed an additional wallop. It also sparked much-needed joy, once we recuperated from the news flash. Jeffrey’s birth two weeks early, as Randy’s job mercifully ended, provided a perfect boost. He was beautiful,…

Managing My Physical Health Takes a Huge Mental Toll

I got out of my van at the hospital for what felt like the millionth time that month, and I could hear the deafening sound of a helicopter landing above me. Though hundreds of feet above, its whirling sound ricocheted off the buildings and echoed down below. The sound vibrated…

Teacup Rides and Wheelchair-spinning, Oh My!

When I was younger, I enjoyed the hyperactive nature of the teacup ride at Disney World. My mom hated it, but my dad was willing to accompany my siblings and me on this headache-inducing extravaganza. Spinning around inside a giant teacup from “Alice in Wonderland” was enough to entertain a…

What It Means to Stay Healthy While Living With SMA

One glance at my medical records will very clearly tell you that I’m not exactly healthy. The information contained within my chart includes a primary diagnosis of spinal muscular atrophy type 1 and a list of medications prescribed to treat that disease and manage its…

SMA Is Part of My Identity, and I’m Proud of It

I came close to starting my first-ever Facebook war recently. Well, not exactly. My conscience quickly kicked in and my mother became my sounding board instead. After reading a comment from a stranger on the internet, I had a lot to say. Sadly, I’m almost immune to the negative feedback…