Columns

The Struggle of Getting Medical Equipment

My life is full of medical appointments, and they all tend to be fairly inconvenient. Necessary, but inconvenient. I can’t attend them on my own because, well, I can’t drive or take care of myself. So, my mom ends up having to take a day off work…

Days That End in ‘Why’: A Letter to My Parents

Dear Mom and Dad, In the wake of FDA approval of Zolgensma, jubilant feelings soar like a kite, beyond the boundaries of wonderful to the highest altitude of hope. Mom, we recently had lunch together and chatted about new SMA treatments and their incredible impact on SMA families. You…

Finding Serenity in the Eye of the Storm

If you’ve been keeping up with my column, you’ll know that my parents and I are essentially living in a no-fly zone (only our closest friends are allowed to visit because the house is a mess and also probably a health hazard). There…

Curiosity and Sweet Moments Build Special Bonds

As I was staring at a blank screen preparing to write this column, my little cousins Jackson and Mackenzie, who are 8 and 6 respectively, were playing with my nephew’s motorized car in my living room. Our fathers were on the back porch having a drink…

From SMA to BWS: Clara’s Diagnosis Was Unexpected

We had no reason to doubt that our third baby, Jeffrey, would be healthy. Our other children, Matthew and Katie, were in good health, and any known “premature” deaths in our families were attributed to miscarriage. And then SMA entered the picture. We said hello and…

Remodeling the Bathroom for Ella

Ella is growing up. She just turned 9 on June 10 and will be entering the fourth grade this fall. Her mind is as sharp as a tack. She’s starting to understand sarcasm and the ways it can be used. She is expanding her friendships to include a variety of…

SMA and Progression: Do What You Love While You Can

SMA comes with a lot of challenges. The progression of the disease is the worst — at least, in my experience. About a year to 18 months ago, I finally had to accept the fact that I just couldn’t drive my electric chair anymore. Honestly, I probably shouldn’t have…

My Bobblehead Days Are Behind Me

One of the ways that spinal muscular atrophy (SMA) has affected me physically is my posture. I’ve always had difficulty sitting up straight, and to this day I have lateral supports attached to both sides of my wheelchair to help with this. I…