Taking care of Ella is a full-time job. She needs help getting food and water, going to the bathroom, and moving around into various sitting positions. She needs help playing with toys, swinging on the swing, and going in and out of the house.
Wicca kind of fell into my lap when I was about 12. Or maybe I fell into its lap. Who really knows with these things? I’ve always been what I’d consider a “Halloween girl.” Someone a bit more spooky and ethereal than I actually…
On Tuesday, April 2, I embarked on a noble quest. At one point, I thought I would need to summon the power of all six infinity stones to accomplish my goal. My mission was to obtain two tickets for the opening night of…
We are all affected by changes that call for us to acclimate to the seasons of our lives. Year after year, a wildflower finds its place under the sun. Spry leaves will droop in heavy sorrow during the drenching spring rains. A sturdy stem will bend in summer whirlwinds that dishevel…
I was recently asked about resources in the SMA community — what’s available, but also what’s missing and what we would most benefit from. Before I started this column, I didn’t really have much contact with the community. I went to…
I recently asked my brother, Adam, what his earliest memories of SMA are. At the time of my diagnosis, he was only 2, but his sharp memory has served as a powerful tool whenever we’re reminiscing about our childhood. Adam has always been like that. Growing up,…
New life experiences are welcomed when you’re a columnist. I’ve already written about notable stories from my past, and I generally don’t enjoy sharing my two cents on current events. I don’t want to beat a dead horse, or perhaps more accurately, beat Dr. Phil with a reusable…
Ella has been in therapy since before the day of her diagnosis with SMA. We knew she was late meeting many milestones, so we went to Early Intervention and started physical therapy. For every step forward, she took two steps back. We were dumbfounded. It…
Spinal muscular atrophy (SMA) can cause a lot of things, including muscle weakness, fatigue, and pain. It’s different for everyone. It also changes. One of the best side effects of my life with SMA is that I’ve been able to exercise my adaptability and my creativity. For me, the…
Between frequent migraines, sleep deprivation, losing significant strength in my arm and upper body, and the universal growing pains of being a teenager, my high school experience came with plenty of challenges. There was also that time I mustered the courage to ask a girl…
Get regular updates to your inbox.
