Our prayers have recently been answered with the arrival of a new weekend night nurse, and it feels like the wheels of progress are finally turning on my journey with spinal muscular atrophy (SMA), hopefully in a big way. The nurse couldn’t have come at a better — or…
Soaring With Hope – a Column by Ari Anderson
My daily schedule is full, so it’s important for me to use my time wisely. This allows me to enjoy fun activities and do the work I love. I face various challenges in balancing my time. Some can’t be changed, but I have found solutions to others. What I…
Living with SMA entails so much more than physical challenges and caregiver shortages. Our lives are much fuller and richer than that. The riches are in our day-to-day experiences, as well as the wisdom and maturity that SMA bestows upon us. This often results in other qualities, such as…
Last month, I wrote about a whiteboard of collected memories I received as a gift when I graduated from college in 2005. It had 38 pictures on it that showcased the many life adventures I’d had up to that point. I noted that the whiteboard recently fell off the wall…
When my great-aunt was 100, she used to sing a song that said “count your many blessings.” As I approach another birthday and complete another year on my journey with SMA, I’m counting my blessings one by one. I’ve had plenty of crises — or as I call them,…
When I graduated from college in 2005, I received a special gift: a large whiteboard to hang on the wall. It had 38 pictures on it showing many of my adventures with SMA and other key moments I’d had over the years. Those pictures have remained on my wall…
With SMA, I work hard to take advantage of every opportunity that comes my way. But what if I’m missing something? What if there are opportunities that are within my grasp, but I’m not aware of them? That’s why I’ve been doing some inner exploration. It can teach both…
Because I live with SMA, I value comfort and routine, which help to alleviate some of the hardship and stress that come with managing this disease. Since January, a new day nurse has been doing her best to provide these things for me. Her excellent care helps to protect…
I’ve been through a lot with SMA. I thought I had experienced everything, but on March 20, I was proven wrong. It was a frightening shock. That morning, my nurse was dressing me while I was in bed, as usual. My mom also happened to be in…
At the beginning of the year, I felt a sense of calm because I finally had enough nurses to complete my home nursing staff. There was no pressure to find a replacement for a nurse leaving my case. That kind of calm is priceless in my life with SMA.
