“This is probably my favorite part about having a feeding tube,” I said to my mom as a phlebotomist pierced my vein with a needle. Since becoming tube-fed, I’ve become more hydrated. And since becoming more hydrated, I no longer need to be poked and prodded every time I go…
Columns
Hi, friends. It’s been a minute since I’ve written to you. Some of you are well acquainted with me, while others are just beginning to peek into the window of my life as I put pen to paper. Yes, I know this is a digital age, but my love of…
Unlike most days when I draft my column, I had this one all figured out. Recent brain sparks of potential topics provided me with such confidence. I plopped down at the computer earlier than usual on Sunday to tend to a few odds and ends before getting down to the…
My 6-year-old niece, Lily, made an astute observation while we were waiting in line at Disney World to get a picture with Daisy Duck. “Is that a person in a costume?” In a place designed to capture the imaginations of children, leave it to Lily to break the spell with…
Makeup and I have had an on-again, off-again relationship over the years. We were introduced when I was a kid. Though I don’t remember much of my childhood because of relational and medical trauma, I do vividly remember my mum taking me to buy lip gloss when we were on…
Every disabled person, including those with SMA, has likely received the well-intentioned compliment of being told they’re inspirational, but it’s not a label that everyone is comfortable wearing. This fact leads me to wonder why. Who should we take inspiration from, and how should we communicate it? We all…
When I was a little girl, my parents would take my brother and me to Cape Cod, Massachusetts, for family vacations. Those memories have always been so dear to me. We’d pack the car full to the brim with bathing suits, beach toys, and, of course, all my…
When my back is to the wall and a crisis is coming to a head, that’s when my life really gets interesting. There are no more long waits to see if something will happen; instead, something has to happen. The way I see it, human intervention usually occurs, but that…
Somehow we’re fast approaching June’s final days! As summer continues, plenty of memories dance in my head. Particularly eventful, to put it mildly, was 1997. Our summer that year commenced in mid-May, when our third baby, Jeffrey, arrived two weeks ahead of schedule. As my volunteering stints in the elementary…
Last year, I had the incredible privilege of interviewing Corinne Busche, the current game director for Dragon Age’s fourth entry, “Dragon Age: Dreadwolf.” Busche is someone in the video games industry I’ve come to greatly admire for her kindness toward fans of the franchise and her enthusiasm about “Dreadwolf.”…
Recent Posts
- Looking forward to the new year with more confidence than ever
- Motor unit changes track with SMA severity, new study shows
- SMA community honors legacy of disability rights activist Alice Wong
- Teamwork and faith helped my parents raise children with SMA
- SMA treatment Evrysdi shows multiple benefits for adults
