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As a tiny tot, I crawled everywhere. I was the daintiest crouched explorer my backyard habitat had ever known. Once I crawled, my family soon beckoned me to begin walking. That’s how the sequence of life works, after all. When we’re given the breath of life,…
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Many of my friends with disabilities have been posting about the 30th birthday of a well-known gem, the Americans with Disabilities Act (ADA), which was signed into law on July 26, 1990. This milestone has generated a furnace of emotion, prompting all manner of incredible perspectives. I’ve read posts…
Have I ever told you that my significant other, Andy, has Becker muscular dystrophy (BMD)? Or that we met as kids at MDA Summer Camp? We did, indeed. Our hometowns sat about a two-hour drive apart. We stayed connected and remained friends throughout our teenage years but never…
Dusk was settling in. The sun had clocked out for the day, and as it traveled farther and farther away toward its sleeping quarters, the moonlight grew radiant in the stillness of the evening. I stared intently at the tall grass of the tree line. I waited patiently for…
Here in the Midwest, “going for a drive” is an authentic thing. When the tall grass gleams in the golden hour of a lazy Sunday afternoon, countryside rustic roads beckon people to roll their windows down, ignite the engine, and explore. In our current times, the splendor of this activity…
I’ve noticed a trend in social media posts lately: Many of us are missing out on highly anticipated plans. Glorious vacation itineraries have been crumpled. Getaway maps have been folded up and tucked into glove compartments. Retreats sit silent without human reflection. We are all supposed to be somewhere we’re…
My cellphone vibrated atop my kneecap. I glanced down at the screen. An alert emerged from a local news app: A case of COVID-19 had been identified in my small city. I was sitting in our living room with a grateful heart, looking out the windows as the downy glow…
I’ve come down with a fever. As I sit on my outdoor patio, the tall angle of late February sun kisses my cheeks and warms my bones. From one bare tree branch to another, chickadees chatter amid treetop frolic. Surrounding me along all borders of the patio is a…
“So, Katie, how’s your sex life going? Any concerns there?” With weak neck muscles, I craned my neck sideways and forward in search of eye contact with my gynecologist. His head and bow tie floated above the peak of my knee cap as cold stirrups rigidly cradled my feet.
I’ve been on hiatus from writing about my SMA. Truth be told, I’ve needed to break away from the constant reminder that SMA rules my life. When it wants to, SMA tosses banana peels into any gleaming trajectory I’m traveling. It kicks the sturdy platform from beneath my…
Imagine your soul as a canvas that illustrates the story of your life’s journey. Sprawled across an artistic medium, what would your scenery reveal? For some, it would be a river of peaceful waters winding into stormy rapids, set upon a base of weathered stone. For others, splashes of bright…
I’ve always considered water a healing element. During toddlerhood, my mom connected me with an aquatic therapy center owned by a warm-hearted occupational therapist named Suzy. I swam weekly until my young adult years, when the scenery of my life evolved. I was off to college, and my therapist…
Dear Mom and Dad, In the wake of FDA approval of Zolgensma, jubilant feelings soar like a kite, beyond the boundaries of wonderful to the highest altitude of hope. Mom, we recently had lunch together and chatted about new SMA treatments and their incredible impact on SMA families. You…
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