Four must be my unlucky number, because the worst years of my life have all ended in four: 2014, the year of major depression, and 2024, the year of suck. (I’m sure 2004 was bad, too, given that I’d just undergone a spinal fusion the year before. Thankfully, I don’t…
“Wicked” is the musical movie superstar of the moment. I loved “The Wizard of Oz” growing up, and while I haven’t seen the wildly popular adaptation on stage or screen, it’s impossible not to know at least some of the music. Stephen Schwartz, composer of both the score and lyrics…
Have you ever dreamed of being a princess (or a prince)? I think most of us have, adults included. I’ve always been a Disney fan, and it has no shortage of princesses to choose from. Each one is unique, so it’s usually easy to find at least one you can…
As I reflect on 2024, I see that some great things have happened for me. I’m trying to figure out how to multiply those great things so they happen more often. This is one way I can gain an advantage while living with…
Many things help me live with SMA, but light plays a special role in my life. There is actual physical light, such as from the sun, and then there’s the light of hope. I’ve written a lot about the latter, and it’s so special that there’s more for me…
Our baby Jeffrey, who was diagnosed with SMA in July 1997, made the most of his brief earthly stint. I’ve mentioned before that our SMA duty, which lasted mere weeks between Jeffrey’s diagnosis and his death, enabled us to experience prayer and faith in ways that words can’t describe.
If you have SMA or care for someone with the disease, you’ll know what I mean when I say we get sweaty. At first I thought it was just me, but then I read somewhere online that folks like me have sweaty palms. This moment was one of those…
It’s somehow already time for Thanksgiving, the designated day for us to give thanks for our blessings. Ideally, we should designate a few more days each year to doing that — like, say, the other 364 — but one day a year is better than none. I try to give…
Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are the realities I’ve lived with and grown accustomed to for 34 years, there are still some…
Individually and collectively, it’s vital to be sensitive to what’s happening in the world around us. This awareness allows us to be empathetic and strive for change that improves society for ourselves and others. The SMA and disability communities have long battled inequality and discrimination that could…
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