I’m a May baby (actually, May senior citizen is a bit more accurate). I love having a May birthday. From wrapping up spring semesters before my birthday way back in college, to getting back to outdoor activities after winter confinement, and to my birthday falling on the heels of…
Columns
Ella Flourishes Despite SMA
Ella has not been out of the house for weeks. She spends much of her time doing schoolwork. Every morning, her teacher has a class meeting on Zoom. Ella tunes in to get the day’s lesson. When the meeting is over, she immediately gets…
Puzzles are all the rage these days. Since the onset of the COVID-19 pandemic, countless friends on my social media have turned to jigsaw puzzles as a newfound hobby. This particular pastime requires mental focus and time, and as such provides people with a welcome distraction from the…
Post-traumatic growth (PTG) occurs in the wake of adversity, initially through grief work — recognizing that our lives have fundamentally changed as a result of trauma — and eventually through self-reflection. Once we mourn the loss, we can cultivate positive psychological change, recognizing personal strengths…
Ella’s Got Talent
Ella is a social person. She loves developing relationships with others and is always up for a family night. She builds delicate yet sturdy friendships with people and navigates these relationships well beyond her years. Having SMA presents challenges. For many years, Ella watched her siblings…
SMA Humor Writes Itself
The comedian Brad Williams has a great one-liner about writing jokes. Williams’ observational humor is predominantly rooted in his experiences as a man born with achondroplasia, a type of dwarfism. When describing his writing process in the 2015…
Last week, I wrote that to properly address anxiety about the coronavirus, we must sit with our grief and accept it. But grief work is one step among many. Grief work is crucial and valid, but it also lends itself to forward…
I’ve noticed a trend in social media posts lately: Many of us are missing out on highly anticipated plans. Glorious vacation itineraries have been crumpled. Getaway maps have been folded up and tucked into glove compartments. Retreats sit silent without human reflection. We are all supposed to be somewhere we’re…
All three of our kids — Ava, Henry, and Ella — have been stuck inside the house for a month or so due to COVID-19 quarantine. They’ve been finishing school work, playing on their devices, and doing other small projects. Ella’s mom, Lindsay, and I…
As I entered week six of COVID-19 lockdown, I knew I had a choice to make. I could continue to experience the effects of being unable to go to my aquatic therapy appointments and allow my body to remain stagnant, or I could…
Recent Posts
- How voice-to-text technology improved my daily life with SMA
- Home therapy improves life quality for young people with SMA on Spinraza
- How Children’s Hospital Colorado uses gaming to support SMA care
- We need more research on reproductive health in women with SMA
- Developer tries again for US approval of SMA therapy apitegromab
