Columns

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 among…

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 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…

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 took…

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 trees…

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, diagnosed with…

Ella’s Wheelchairs Became Simpler Over Time

Life has been a roller coaster since my youngest daughter, Ella, was diagnosed with spinal muscular atrophy type 2 at 14 months old. Shortly after her diagnosis, Ella received a power wheelchair from our insurance company. It was 400 pounds, raised and lowered to the ground,…

When It Rains, It Pours

We all know the saying. It can never just sprinkle. It can never just be a gentle spring rain, with sprouting blades of grass and birds twittering about new beginnings. It’s either drought or deluge. There’s no in between. We’ve all had moments of absolute absurdity. Days when everything…