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…
Columns
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…
The house is full of chatter while our kids — Ava, 13, Henry, 11, and Ella, 10 — talk to each other and play video games. The doorbell rings as one of Henry’s friends arrives. Henry puts his shoes on and is out the door,…
Not everyone likes it. A while back, I was talking to a friend in Singapore who also has SMA. She mentioned that although she wanted to post something for SMA Awareness Month, she was struggling to balance her desire to advocate and raise awareness with her desire to, as…
As we drove into the parking lot adjacent to a tried and true trailhead, the hollow moon had climbed into the bluest corner of the sky. Drifting thunderheads were perched atop the distant tree line like pensive giants. “Beautiful day for a hike,” I said to my companion,…
As the fall approaches, we are getting ready for school and extracurricular activities. All of our kids — Ava, 13, Henry, 11, and Ella, 10 — are musically gifted. Ava has played the violin since she was in fourth grade. She takes lessons privately through the…
