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…
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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’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…
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…
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…
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…
I’ve written many stories about hope, which has enabled me to climb mountains and achieve my goals. Throughout my journey with SMA, I’ve traveled across many mountain ranges. But what happens if I slip or face an…
I’ve been through a lot with SMA, but in April, I faced something different. Early that month, my mom and I both tested positive for COVID-19, something we’d strived for years to avoid. It started with body…
I’ve written a lot about the support I’ve received from nurses and others. Although I always recognize the people in my life one way or another, I have yet to celebrate plenty of people, both medical professionals and…
Last in a series. Read part one here. Previously, I wrote about an extremely important topic: safety while using the Passy Muir Valve (PMV). This wonderful tool helps people with a tracheostomy improve their vocal communication by…
First in a series. As someone with SMA, I often think about the safety of my care. Many years ago, I told someone I’d been busy training a new nurse, and the person I was talking to…
If I could go back in time a year, to Dec. 31, 2022, and retain what I know now, I’d be so excited about the people who would come into my life in 2023. I’m referring to my…
