Columns

In January, I self-published my debut collection of poetry titled “Witchcraft and Monsters.” In case you think that being an author is a “very chill job” (many believe it is not a job at all), I’m here to tell you that it is not. Yes, 95 percent…

They say it takes a village to raise a child. If that’s true, then it takes an army to care for someone who has SMA. Though most of us tend to have one or two primary caregivers, the reality is that we depend on countless people every day…

Let me tell you about a summer to remember, a time when I journeyed to distant lands where magic danced across darkness and light. My wheels rolled beyond emerald hills that swelled with fellowship and togetherness. Acts of kindness smiled upon heavy hearts. Dining tables abundant with food were garnished…

I have a reputation in my group of friends for not knowing any music. It’s gotten to the point where my friends have started making playlists of music that I missed out on in high school, such as Rihanna and The Black Eyed Peas. Sometimes when I’m on…

Most people are familiar with the phrase “from where I stand.” The person speaking generally follows it up by sharing their personal perspective on whatever situation is at hand. It is not uncommon for two people to view the same situation in different lights. A variety of things can influence…

A good way for me to gauge whether or not I’m due for another Spinraza (nusinersen) treatment isn’t by looking at a calendar or counting back the number of weeks from my last dose. It’s simply by feeling it. I’ve noticed a certain cyclical pattern in my experience with Spinraza,…

I’ve dedicated columns to my two best friends Darren and Sam before. They’ve been pillars in my life for as long as I can remember. While I’m a few years older than them, we more or less grew up together. However, they’ve now both reached the milestone of…

Ella is growing up. She is starting to see the world through new eyes. She’s finding humor in light sarcasm, developing a taste for music, and exploring her artistic side. Her friends are becoming increasingly important in her life. Last weekend she asked if one…

Recently, I had a full day of appointments in the city. It takes two and a half hours to travel there, and leaving my house for that long is a challenge. Days like these make me miss when all my doctors were at the children’s hospital.

When it came time to plan for my brother’s bachelor weekend festivities, I was adamant about participating as much as possible. Events like this aren’t always inclusive for people with disabilities, but the two guys who planned this weekend wanted to make it accessible for me. I knew…