SMA has certainly given me the privilege of seeing cool gadgets and cutting-edge technology evolve over time. For instance, I’ve had five different wheelchairs since 1987, when I was 5 years old. The technology of them has changed so much over the years that I’ve felt like a passenger…
In addition to moving into my new home in February, I’ve been experiencing several other major changes. I’ve been bracing myself for them since they arrive in waves. Thankfully, several anchors in my life add stability and prevent me and the wheels of my chair from being swept away. First…
Now that I’ve been living in my new house for a month, I better understand what I love about it. In my last house, where we’d lived since I was 13, I had my own home within the home, which included my bedroom, bathroom, kitchen, and medical supply room.
Memories are like windows that look inward. Living with spinal muscular atrophy (SMA) certainly adds a special framework to that window, allowing light to pour in on all the unique experiences I wouldn’t have otherwise had. I consider that a blessing. SMA has taught me to treasure my…
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…
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