Columns

To the People Who Got Me Through This Year

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…

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…

Putting a Different Twist on Thankfulness

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…

Ella Has Made Big Gains Since Diagnosis Day

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…

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,…

Hope, Uncertainty, and Shooting for the Stars

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…

Life With SMA Can Feel Like an Anomaly

Recently, my little hometown in New England experienced one of Mother Nature’s many shenanigans: a decent-sized snowstorm in October, or “Snowtober.” This isn’t the type of climate we are conditioned to around here. Nevertheless, it was quite the sight to see a blanket of 6 inches of snow with…

Remembering That November, 23 Years Ago

It all started 23 years ago, this propensity for November to pack a punch. In the wee hours of Nov. 1, 1997, a power outage set the stage for an eventful day. Make that an eventful few days. By that time, our baby Jeffrey,…