For kids, February tends to entail a Valentine’s Day party for every activity, club, or team they’re a part of. Our mom used to take my brother and me to plenty of these parties when we were little, as we were actively involved in church, disability organizations, and our home-schooling…
With Super Bowl LVIII around the corner, it’s a bittersweet feeling for avid football fans like me who enjoy watching countless hours of football every week. On the one hand, the thrill of the most exciting game of the year fires me up. But on the other hand, I…
One of the hardest aspects of the SMA journey is a loss of independence. If I reach back into the deepest depths of my memory, the first time I can recall this happening was when I started using straws as a child. My mum had noticed I was having…
For most of January, my calendar was filled with appointments and procedures. I’ve found that a crowded schedule isn’t out of the ordinary when living with SMA. Taking care of myself is a full-time job — one that I didn’t sign up for, but still face with strength and…
I was apprehensive when I was wheeled into my neurologist’s clinic on Jan. 18. I had taken my last dose of Evrysdi (risdiplam), a life-changing oral treatment that can improve motor function in SMA patients, during the last week of September. That was four months ago. “Why…
Content warning: This column discusses medical trauma. First in a series. Who really knows what time it is? 11? 12? 1? Time blurs when you’re on the precipice of something that will throw a wrench in all of your plans. I’m lying in bed in our newly purchased recreational…
It seems there are hacks for everything now — little tips and tricks designed to help us get the most out of life while saving time, energy, or money. The internet and media are full of hacks for interior design, organization, cooking, budgeting, traveling, fashion, mindfulness, and just about anything…
When living with SMA, building a survival toolkit is essential. These are the resources and strategies that help me navigate any challenges that come my way. While most items are obvious, such as my medical equipment and assistive devices, my toolkit contains one unusual item that I…
First in a series. As someone with SMA, I often think about the safety of my care. Many years ago, I told someone I’d been busy training a new nurse, and the person I was talking to responded, “Ari, you made me laugh out loud!” What was so…
My husband, Randy, and I sat across from the pediatric neurologist, eagerly anticipating his opinion of what was affecting our 8-week-old baby, Jeffrey. I say eagerly because I’m an optimist, and I’d taught kindergarteners at a self-contained school for children with multiple disabling conditions. I felt confident that we’d…
