Ella sits in the waiting room every Monday at 3:30 p.m. as Ava and Henry receive their instrument lessons. Ava plays the violin and Henry the piano. While she waits, Ella either reads or plays on her iPad, practicing patience. At home, Ava and Henry are to practice…
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Living with SMA or any kind of visible disability means that numerous awkward conversations inevitably will occur. It’s simply one of the things that happens when you’re in a wheelchair, especially when talking with kids or really, really dumb adults. Yet with all the odd comments and questions…
“When life gives you lemons, make lemonade.” We’ve all heard this saying. It has been repeated and engraved into our brains. It teaches us to take the bitterness of life and learn to make it sweet again. Rise above our adversities and choose to lead a positive and…
Ella has been in physical therapy (PT) and occupational therapy (OT) most of her life. She has had several therapists over the years, but our current ones have been part of our lives for quite some time. The relationships have blossomed to one…
As summer comes to an end and many colleges and grade schools are already in full swing, I’ve been thinking about how I made it through four and a half years of college as someone with SMA. It was far from easy, but it was still one…
We made it home safely after a long road trip! And we’re all pretty much exhausted. We’ve been on some pretty intense trips over the years, but this one might be our personal best: upwards of a thousand miles in less than…
“How come Ava and Henry get to go to their friends’ houses and I don’t?” cried Ella as Henry left to visit a friend. “It’s just not fair!” As Ella grows older, her needs change, mature, and expand. She’s at an age when she wants…
While modern technology is a nice convenience for most people, for people with SMA, it’s one of the most innovative resources we have to live independently. I recently wrote about my new wheelchair and how the features on it help me adapt to my weakening body…
“All right, Alyssa, let’s see how quickly we can do this,” I shouted to my assistant, who conveniently shares my name. I had exactly one hour to get flowers at the local supermarket and get to the hospital to visit my grandfather before his physical therapy appointment. So…
Ella’s excited to start school. She adores her school, her teachers and her classmates. Now that summer is coming to a close, Ella counts the days until she can begin going to school every day. Each day this week, she barrels in and out of the house, onto…
