It seems fitting to address the current whammy threatening every single person on the planet. It’s unfortunate that it’s a menacing global health upheaval bringing us together in myriad ways. On the other hand, maybe that’s what it’s taken to counter the relentless political squabbling and divisiveness.
Columns
Ella loves school. She thrives on social interactions and has a thirst for knowledge. Every day after school she gets a snack and pulls up to the breakfast room table to work on her homework. On weekends she plays school and pretends to be the teacher. Her grades…
The world is holding its collective breath as COVID-19 makes its way across the globe. My daughter Ella has SMA. Her respiratory system is particularly fragile and compromised due to her disease. A simple cold can wreak havoc on her, landing her in the hospital…
Almost every aspect of my life with SMA comes with a risk factor. Whether I’m traveling out of town or going to a movie with friends in the wintertime, I’m putting my already compromised immune and respiratory systems at risk. My health has improved significantly in recent years,…
For many years, I’ve been involved in a fantastic local organization called Turnstone that serves the disabled community with a variety of services. I’ve been blessed to benefit from Turnstone’s services since I was 3, both as a client in therapy and in other programs. In recent years, I have…
Another day, another opportunity to go through a box of tissues to wipe the drainage coming out of my ears. Is that how the saying goes? That may have come across a bit grotesque, but unfortunately, it is my current reality. In my last column, I…
I’ve come down with a fever. As I sit on my outdoor patio, the tall angle of late February sun kisses my cheeks and warms my bones. From one bare tree branch to another, chickadees chatter amid treetop frolic. Surrounding me along all borders of the patio is a…
The Time I Would Have Given Back
It’s daylight saving time and we have given back the extra hour we snagged in the fall. I don’t like giving time back. Usually. Ahhh … time. It’s a given that when you’re having fun, time whizzes by. My six weeks studying in Europe after high school?…
Warm weather in Chicagoland is slowly but surely creeping in. Temperatures on some days allow kids sporting short-sleeved shirts to play outside. Ella’s older brother, Henry, recently took advantage of a warm Saturday afternoon. He found his basketball and pumped it up. We have a regulation-sized…
I spend the majority of my time in my power wheelchair. Other than my weekly water therapy sessions, I’m usually in my chair from when I get up in the morning to when I go to bed at night. My…
Recent Posts
- How Children’s Hospital Colorado uses gaming to support SMA care
- We need more research on reproductive health in women with SMA
- Developer tries again for US approval of SMA therapy apitegromab
- Collaboration makes the impossible possible after an air travel impasse
- FDA approves high-dose Spinraza regimen for new, existing SMA patients
