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…
Full disclosure: I think Leif Erikson Day is far more legitimate than Valentine’s Day. Even though its popularity stems from the fictional universe of “SpongeBob SquarePants,” at least its origin isn’t directly linked to a beheading. Though I do think…
It’s been a hard week. Half because I’m an emotional kiddo who takes everything twice as seriously as I should, and half because my life is changing in some very big ways. Just now, I told my Google Home to play…
Recently, one of our columnists, Kevin Schaefer, took to the SMA forums to discuss his experiences with hiring new caregivers. His portrayal of what these experiences entail certainly resonated with me, especially during this particular season in my life when I also am beginning to hire new…
Last in a series. Read parts one, two, and three. To wrap up this series of conversations with people close to me, I interviewed my best friend, Sam DeVos. Sam is one of the most positive, optimistic people I’ve ever met, so I thought perhaps…
If someone asks me to speak in front of hundreds of people, I say “no problem.” Stick a needle in my neck for a Spinraza injection, and it’s no big deal. When it comes to traveling across the country for an SMA conference or…
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