For a couple weeks, I’ve been in a malaise and I couldn’t pinpoint the source of it. Of course, the occasional bad day will happen, but this was prolonged. Reading various columns and SMA News Today Forum comments has reminded me just how brutal winter is for…
Ella is beginning to look to her future. She realizes that all of the hard work she puts into her physical therapy sessions will help her in the long-run. She accepts that the Spinraza (nusinersen) injections, which she doesn’t like taking, are also…
I live my life surrounded by machines. I wake up every day wearing a soft nasal mask, which is connected by a large tube to my BiPAP machine. The steady flow of air pumping through the tube is the first thing I hear in the morning.
Earlier today, I signed the paperwork that will officialize my change in major. It wasn’t that big of a deal. It involved two minutes of my time, most of which was spent trying to figure out my projected graduation date, and a quick email to…
Allow me to begin this column by traveling back in time to the days of middle school mathematics. Now, my memory may not serve me as well as it did during my school days (I’ll blame it on “old” age), but I do particularly remember sitting in class…
Ella has had a full week. Her school held parent-teacher meetings over two days. At Ella’s school, the students lead the conferences. She made a slideshow to showcase her work and then practiced her presentation at home outside of our hearing. The kids had Thursday and…
To any parent who has a child with SMA: Recently, I had a conversation with my caregiver Randy about our goals for the future. We talked about career goals, relationship goals, and all of the things we each wanted to do with our adult…
One of the hardest things about going through a crisis is feeling like you’re five years behind everyone. Facebook is dangerous because people are getting engaged, Twitter is depressing because writers are finishing their manuscripts, and Instagram is a precarious combination…
I always struggle with mental health at this time of year. Winter has that effect on me. Each year, I tell myself things will be different, so I map out a game plan for avoiding falling into my yearly rut. Podcasts are queued, books patiently wait to be…
An early morning rain lent itself to the Chicago traffic. The highway was backed up for miles and we had an hour to get to Ella’s Muscular Dystrophy Association Clinic at Lurie Children’s Hospital. Every six months, Ella has to go and…
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