The weather can affect those of us with SMA in ways that many people wouldn’t think of. For example, I wish I could just enjoy looking out of the window as the snow falls, with everything I need to wait out a winter storm. But in my reality, ice,…
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…
Since July, my family has been converting the garage space in our new house into my own bedroom, bathroom, kitchen, and medical supply room. We’ve faced one challenge after another as we prepare to move. Currently, I have a great setup that accommodates my SMA needs. I have all…
I bravely soar to meet the challenges of SMA with determination and a can-do attitude. But despite my positivity, certain things get me down sometimes. I feel discouraged whenever I think about how only the few people closest to me know who I truly am on the inside. I…
A great relief comes when you’ve been working hard to get through an obstacle and finally see progress. Perseverance is rewarding. In my case, SMA has given me many complicated challenges. As my mom, my medical team, and I vigorously work through each one, the relief we feel when…
I’m now in a season of life when things that were once taken apart are getting put back together. In my previous column, I explained that after 29 years of living in our house, my mom and I made a momentous decision to move into a multigenerational home with…
Back in July, I wrote about the small apartment my mom and I used to live in before we moved into a new home when I was 13. In the new house, I have a better bedroom and bathroom, my own kitchen, and a medical supply room — all…
To highlight SMA Awareness Month this August, I could go on and on describing the physical aspects of my life that occur every day. For example, I could talk about the aggressive respiratory care my mom and my nurses provide me to keep my lungs clear. Or I could…
On Sunday, I climbed another mountain, and I’m giving a prayer of thanks and saying, “Hip, hip, hooray!” Why? Because I had my 42nd birthday on July 7. It’s a high moment for me because I’m now 40 years beyond the life expectancy I was given as a…
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