Over the past weekend, pictures from the annual candle lighting for SMA that took place on Aug. 11 inundated my social media feeds. As most of our community knows, this lighting represents the lives lost too soon to this debilitating disease and those who are still living in spite…
Kids grow … and Ella’s right there along with them. Since her spine surgery, Ella has gained a bit more than 5 inches in her height. And every three months, she gets her spine rods lengthened. She sits tall and straight in her wheelchair, and…
In the closing scene of the 2002 “Spider-Man” movie starring Tobey Maguire, a solemn Peter Parker leaves the funeral of Norman Osborn with a spirit of both determination and resentment. While determined to carry on the legacy of his late Uncle Ben and be the…
I’ve been putting this column off for a while. While I’m perfectly fine with sharing some things, I generally don’t like to talk about the people in my life. But this is something most, if not all, SMA patients deal with at some point, and I…
It seems like just yesterday I was living in a perpetual state of chaos. My life was going a million and one miles per hour, and there was no stoplight in sight. Most days, I was struggling to make ends meet, always trying to juggle healing my body,…
Engaging in normal conversations is difficult while in a wheelchair. If people stop staring long enough to say anything at all, it likely will be related to my disability. My appearance evokes a variety of questions ranging from ignorant and annoying to genuine and understandable. While I can’t…
It’s been a long summer. The kids have found things to keep them busy, but playdates for Ella have been few and far between. That is, until new neighbors moved in just down the block. Our new neighbors are from New York,…
When you or a family member has SMA, chaos management becomes second nature. You come to expect the unexpected, and you learn to adapt to whatever absurd obstacles come your way. Case in point: the majority of my family’s vacations. You could easily…
My head has been feeling pretty good lately, thanks to the humidifier I recently started using. So, today I walked into my ENT appointment pretty optimistic. The nurse was actually the same person who administers my allergy shots, so it was nice seeing a friendly face.
The past four weeks have taught me some hard lessons, which came as no surprise. I’m the type of person who constantly searches for meaning and purpose during every peak and valley of life — especially the valleys. Finding valuable takeaways from every difficult situation in my life…
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