Our daughter with SMA, Ella, had a doctor’s appointment with her pulmonologist recently. Her grandparents took her to the appointment because my wife, Lindsay, and I were working. Ella and her grandparents started their day early and returned by mid-afternoon. During the day, we received a…
Columns
Wearing My Vader Mask at Night
Every morning when I wake up, I feel like my nose took a beating the night before. Grogginess is one thing, but when you factor in a BiPAP machine, it adds an extra layer of discomfort. As soon as I awake, I can’t…
The romantic in me wants to believe that dreams are portents, or windows to the psyche, or invaluable self-knowledge tools. But the therapist in me, who dabbled in clinical psychology for a time, is suspicious of anything resembling psychoanalysis. (I despise Sigmund Freud, but that’s a topic for another day.)…
I have never been a morning person. My family, friends, co-workers, and pretty much anyone that has ever met me can tell you this is true. But on rare occasions, I’ll wake up quickly without wishing for just a few more moments of sleep. Last week was one such occasion.
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…
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…
The Uncanny SMAers
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…
Recent Posts
- How the Winter Olympics can remind us of the power of imagination
- Children with SMA, their caregivers struggle to get quality sleep: Study
- For SMA children, early start to therapy may help with swallowing, eating
- Guest Voice: Helping my son live his best life with SMA is an honor
- Blood biomarker ratio may track Spinraza response in SMA children
