I don’t know about you, but this time of the year always has me daydreaming of some sort of tropical getaway complete with life-changing excursions and the ability to immerse oneself in new cultures and traditions. At heart, I’m consumed by wanderlust. I love seeking new adventures and exploring all…
Children engage in all kinds of play throughout the day, from quiet play to rambunctious play. Ella is no different, although her terms of engagement can sometimes be different from your typically developing child. When she goes to the park, she races…
December 23, 2016 was a big day for my family and me. Not only did my sister go into labor with she and her husband’s first child on this day, but it also was the day it was announced that the first FDA-approved treatment for spinal muscular…
I’ve been trying to resist my depression ever since I wrote my column on disability, mental illness, and my inability to pretend that everything in my life is OK. When I say resist, though, I don’t mean that I’m ignoring it…
Let’s imagine you and I are enjoying a delicious cup of coffee right now. Around us are people engrossed in their laptops, slugging down every ounce of caffeine, just to survive the workday. Old friends, new friends, and best friends sit and mingle on their lunch breaks or while their…
Children grow. They grow older. They lengthen. They gain weight. The same is true for kids with SMA. Because they are wheelchair-bound, their caregivers spend much of the day lifting them in and out of their wheelchairs. Lifting them for various reasons can be…
As I’m writing this, I’m not working on a laptop, but on my iPhone. To my left is my robotic arm, mounted on the side of my wheelchair, which I’ll use later tonight to eat dinner. Over in the corner sits my chest PT equipment, which I use…
I’ve been depressed on and off for over a decade; I’ve what is called persistent depressive disorder or “dysthymia.” I still feel hopeless, I still lack productivity, I still struggle to enjoy my favorite activities — they’re just intermittent, and…
“Get off the pillow!” screamed Ava. “It’s my pillow. You get outta my room!” yelled Ella. “You wanted me in here…” argued Ava. “Well, now I don’t, so GET OUT!” screeched Ella. It’s a game of…
There was a period when the last thing I wanted to do with my summer was spend time with other people who have SMA. As a moody, cynical teenager, I really couldn’t care less about engaging with any kind of disability community. I wanted nothing more than…
