The other day I found myself daydreaming on the way home from yet another hospital appointment. The monotony of the ride was all too familiar to me. This time, however, my spirit felt a little more crushed than usual and my energy lower. If the walls of…
Columns
Back in 2014, I was a kid who simply wanted to graduate high school, take a year or two to relax, and go from there. This is not a decision I regret because I generally hated school, and I thought I owed myself a break. However, I…
Ella spends much of her day on the first floor. She races around from the living room, through the kitchen or front hallway, and into the family room, or vice versa. Sometimes the dogs chase her, or she chases them. Often, Ava and Henry join in…
Twitter is an interesting place. On one hand, it provides a platform for me to share the things I love with like-minded people and to connect with other internet and pop-culture addicts. I love waking up in the morning to memes, witty one-liners, movie conversations, and…
Those of you who follow me on Twitter may have noticed that I’ve been posting a lot of selfies lately. I’ve written about my complicated relationship with selfies before, and I’m forcing…
Being born with SMA put me at a severe physical disadvantage right off the bat. Most tasks requiring physical strength were off the table from day one, so I rarely had to deal with loss. For the first 18 years of my life, my disease’s progression was also…
Several years ago, an organization known as “Special Spaces” contacted us because someone nominated us for their service. The organization performs a complete bedroom makeover for kids with cancer, heart conditions, tumors, and other illnesses. Ella was nominated and chosen for a bedroom makeover.
Last week, I wrote mostly about my trip to New York City, and how my parents and I managed to drive through rush-hour traffic in Times Square. Once we made it into the heart of the city, plenty more adventures were to be had that…
Waiting for the Sun to Rise
Those of you who’ve followed my column for a while know I try to be honest about what I’m going through. I don’t pretend my life is perfect for many reasons, one being that … it isn’t. As nice as it is to curate a “life”…
Although Mother Nature seems to have other plans lately, the days crossed off our calendars have us inching closer and closer to summer. Ah, yes, summertime, when the weather is fine and everyone feels extra self-conscious about their “summer bods.” Achieving that “perfect” beach body is at the…
Recent Posts
- SMA does not define us or limit our dreams
- Magnetic rod surgery safe, effective for kids with SMA type 1: Study
- How voice-to-text technology improved my daily life with SMA
- Home therapy improves life quality for young people with SMA on Spinraza
- How Children’s Hospital Colorado uses gaming to support SMA care
