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…
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…
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…
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…
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,…
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…
Today is thought to be my sweet beagle’s 11th birthday. Even if it’s not her actual birthday, it’s still her unbirthday — and to any fan of imaginative literature, an unbirthday is a worthy touchstone of celebration in its own right. Our beagle, Eva, was a rescue. When my partner,…
This time of year has always been a favorite of my three children. Ava (13), Henry (12), and Ella (10) enjoy the changing leaves and the warm fall days followed by chilly nights. They delight in leaf piles and in wearing sweatpants and sweaters to keep warm. They…
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