It’s so much more than the turkey. Memories of childhood Thanksgiving gatherings with grandparents, aunts, uncles, and cousins take me to a happy place. My paternal grandmother, Mammaw, wearing white socks and practical black shoes, poured sugar into the bowl for cake icing while the best ever…
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Ella, 10, the youngest of our three children, is thriving. She has friends from school, in the neighborhood, and online. She sings in a community choir, and occasionally plays with her siblings. Due to Ella’s disease, spinal muscular atrophy type 2, which directly affects her respiratory…
If 2020 were a movie, it would have the aesthetic of David Lynch and the shocking twists and horrors of a Stephen King novel, and it would run the length of an unedited Peter Jackson epic. Viewers would yearn for a filmmaker like Wes Anderson to sweep in…
I’m Disappointed, and That’s OK
Can I be real for a minute? Totally honest? Maybe even a little bit of a downer? I’m disappointed. 2020 was supposed to be my year. I had all sorts of plans — tattoos and writing retreats and parties, because you only graduate with a master’s degree and turn 25…
Thanksgiving is almost upon us. Meals are being planned, and turkeys are being purchased. The delicious smells and flavors of pumpkin and cinnamon will be consumed in many homes. And, my favorite part, thankfulness abounds: Family, good health, the food on the table, and financial stability are commonly counted among…
They congregated on a beach in the mild November air. More than 50 of them stood there, wondering if they dare dip their feet into the water or remain lounging on soft sand. Not a mask in sight; not an inkling of social distancing. I suppose when you’re a goose,…
My daughter Ella was diagnosed with spinal muscular atrophy type 2 at 14 months old. Our doctor offered us the hope that although there wasn’t a treatment or cure at the time, there was equipment we could use and therapies we could engage her in to give…
It’s Been an SMA Kind of Day
Certain days can only be described as “an SMA kind of day.” It happens when the power cuts off in the middle of the night, causing the BiPAP machine to stop working and the hospital bed to sink. Or, when…
I’m lucky in that, for the most part, I don’t have trouble falling asleep. I am, of course, perpetually exhausted, which probably plays a role, but I like to think I learned a thing or two from my months-long bout of insomnia. It was the summer of 2017. It took…
I’ve been told many times by many people that I should be a counselor. It’s not unusual for my friends, family members, and co-workers to turn to me for wise advice, calm reassurances, or simply a listening ear. I don’t always know the right advice to give, but I try…
Recent Posts
- Campaign expands accessible rental options for SMA vacationers
- It’s important to reflect on the past, and photos help me do that
- This SMA Awareness Month, let’s reflect on how far we’ve come
- A lack of accessibility nearly caused me to miss my date with ‘Dracula’
- Combined newborn screening test spots 2 rare diseases
