I admit that this column’s title is one I never thought I’d write. But alas, it is 2020, and most of this year has been a series of “never thought I’d ever” moments. So, for the sake of what’s on my heart today, I’ll accept how unconventional the title is…
Columns
Our daughter Ella, who is 10, recently enjoyed the last few days of summer before school started again. During the last of her free time, she played outside, used her iPad, and chatted with friends. She watched TV and stayed up late. And she slept in and played…
Within the pages of the Marvel universe, one of the most iconic superhero teams is the “Uncanny X-Men.” There’s Cyclops with his optic blasts of energy, Marvel Girl with her telepathic and telekinetic abilities, Wolverine with his regenerative healing abilities and…
It’s late August. The songs written by crickets in May have been arranged into full summer soundtracks, playing on loops of background music from dawn to dusk and moonrise to moonset. The aroma of sun-baked leaves swirls about golden afternoons. By now, that usually means my outdoor patio…
My daughter with SMA, Ella, has a knack for making friends. She naturally draws people to her and always finds the good in them. Last week, Ella’s older brother, Henry, and her older sister, Ava, both had friends over at the house. Although Ella was…
A few months ago, I wrote about my ongoing stomach issues and the impact this was having on my daily life. Despite the subject matter, I somehow managed to maintain a serious tone in the column. Truth be told, I was too frustrated…
My dad and I are night owls. We rarely leave the house before noon — and when we do, we complain the entire time, like a pair of sulky babies. My mom laughs at us, but it’s just how our brains are wired. We can fight it, and force…
It’s no secret that I love fashion. One glance into my generously filled closet confirms this. But as is the case with many things, SMA requires that I take a creative approach to style. Today, I thought I’d share some ways in which I navigate the challenges I have when…
In a speech to hundreds of people at my nonprofit organization’s annual gala, my mother stood at the podium and delivered her words poignantly and eloquently. She has always had a way with words, knowing what to say at the right time while leaving the audience…
Not long after our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA), my mother received a note from her cousin, who mentioned her two granddaughters’ “muscle disease.” Having believed for years that the girls had spina bifida, we learned quickly, though not totally shockingly, that…
