I’ve been grieving this month. On some days, the weather was impeccable. Morning dew twinkled on silk linens of freshly spun spiderwebs. The air smelled of sun-crisped leaves dipped in salted caramel. Other days were filmed in grayscale. Winds howled through my window frames. Ragged clouds hung in the sky,…
Columns
Our 10-year-old daughter, Ella, who has SMA, loves to sing. She’ll ask her mother to print out song lyrics and then sit at the kitchen table and sing. Her voice is strong, and her pitch is perfect. She has quite a range as well. During…
Adapting to a Season of Change
Around the corner from my house there’s a shopping mall that’s stood as an iconic symbol of my small hometown for decades. It’s across the street from the high school my sister and brother-in-law went to, and it’s also situated near my go-to Barnes & Noble store, as…
In Defense of Cybernetics
If you’re a member of the SMA News Today Forums, you might know that I trialed the JACO robotic arm a few months ago. When I heard that Numotion was servicing my area of the U.S., I decided to give it a shot. Why not, right? I’m already…
What was the last spontaneous thing you did? Maybe you suddenly decided to treat yourself to ice cream, bought those shoes that have been calling your name, or went for a drive on a nice day simply because you felt like it. I enjoy a bit of spontaneity from time…
I’m still trying to wrap my head around this one: I will be turning 30 at the end of the month. To keep my columns professional, I used a period for that previous sentence. But please know there were many exclamation points swirling around my brain. This milestone birthday is…
Dreams of a White Picket Fence
When I began daydreaming about the kind of house my husband, Randy, and I would someday own, my vision included a big covered porch with a swing, a roomy yard with lots of trees, and a white picket fence. Gloria, our realtor in Fort Worth, Texas, had…
Our local school district just announced that hybrid learning will start at the end of October. We can choose to participate or continue staying at home and engaging in e-learning. If we chose the hybrid learning model, our kids would go to school for…
A Spontaneous Adventure
As my 27th birthday approaches later this month, I recognize that this year will be vastly different from past celebrations. With the current global health crisis, many of us SMAers are spending a lot of time in isolation. Though I’m able to go to certain outdoor restaurants with…
Let me set the scene. It’s 9 a.m. I’ve been awake since 6. My poor, sweet dad has been up since 5:30. We’ve been preparing for this gut punch of a medical appointment for weeks, but even so, neither of us are particularly thrilled with our lives right now.
Recent Posts
- A seasonal treat offers a reprieve from my swallowing difficulties
- Parents of children with SMA report gaps in caregiving support
- Why I’m dedicated to providing support to others in the SMA community
- Evrysdi stabilized motor, breathing function in adults with SMA
- 3 exercises I can do from my wheelchair, and why I do them
