My husband, Randy, and I had our first baby while I was teaching students with a variety of difficult diagnoses. Our son, Matthew, was followed three summers later by our daughter, Katie. During both pregnancies, I never worried that they wouldn’t be healthy. Then, before I blinked too many times,…
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Every now and then, memories from my childhood hit me in the most unexpected ways, which is surprising because I don’t remember much from years past. Alas, my parents were cleaning out our basement recently when they came across a large trash bag filled with some of my stuffed animals.
Memories are like windows that look inward. Living with spinal muscular atrophy (SMA) certainly adds a special framework to that window, allowing light to pour in on all the unique experiences I wouldn’t have otherwise had. I consider that a blessing. SMA has taught me to treasure my…
Second in a series. Read part one. My mum likes to say that my home-care nurse is like a second mother to me, and I’d have to agree. Ever since my SMA care was transferred from a pediatric to a general hospital after I turned 18, my home-care…
Even with SMA, my checkups have, for the most part, become pretty routine. Every six months, I drive 30 minutes to my nearest specialty clinic. While there, I see various doctors, each with their own unique vibe. My neurologist catches me up on all the books he’s read recently.
A few weeks ago, I glanced out my window and instinctively squinted. Before me was my backyard covered in a blanket of ice and thick snow, blinding me with the sun’s reflection. The rocky hills were now shiny and smooth, and the frozen landscape glistened in a magical way. The…
The revelation that my husband, Randy, and I were becoming newborn parents again called for a comprehensive to-do list. Our other children, Matthew and Katie, were in elementary school. With no intention of needing baby items again, we’d kept nothing. Katie, then 7, ecstatically helped me rectify that dilemma,…
When the movie version of “Wicked” hit theaters last fall and skyrocketed to critical and commercial success, musical theater enthusiasts everywhere felt validation. The blockbuster adaptation of the hit musical struck a chord with devoted fans, casual viewers, and anyone with a passing familiarity with “The Wizard of Oz” mythos.
When I backed off my van’s wheelchair lift, I didn’t find what I expected to. We had just parked at a restaurant we’d never been to in a different town, and I knew there would be a ramp onto the sidewalk to my left. I just didn’t think it would…
A few weeks ago, my mother injured her foot, temporarily limiting her mobility. As she struggled to get around, relying on others for assistance, she looked at me and said, “I never realized how hard this is.” That moment stuck with me — not because I was surprised, but because…
