I’d like to say good riddance to 2024, but instead I’ll focus on gratitude
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…
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Even if they don’t stay long, ‘people come into our lives for a reason’
“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…
Finding the disabled princess I didn’t know to look for
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…
My goal is to make great events of 2024 more consistent in my life
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…
Why light is important in my life with SMA
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…
‘Tis the season of yet another angel intervention
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…
How my new BedJet device helps me avoid sweating at night
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…
Being thankful even for SMA
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…
Finding gratitude, even amid the toughest battles of life with SMA
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…
Choosing to represent the disability community well
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…