Time to get up My day begins like this: I wake up and call my caregiver (these days, it’s usually my grandmother or my friend, Sam), who turns off and disconnects my machines. I have a breathing machine called a BiPAP, a feeding pump, and an oximeter,…
Columns
Aug. 12, 2011. One day after our fifth wedding anniversary. Ella’s D-Day — diagnosis day. No treatment. No cure. At the time, we suspected SMA as Ella’s official diagnosis, but it wasn’t until Aug. 12 that we received…
Given how much I loved movies, playing make-believe, and any kind of storytelling, it’s no surprise that I had a desire to get on stage early on. Before my elementary school started its drama club, I acted in church plays, put on my own productions at…
When I first started writing this column, I wasn’t sure what to say. I have a list of potential topics that I’ve been adding to sporadically, but nothing really jumped out at me. You’re probably tired of hearing about my headaches. To be frank, I’m…
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…
