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…
I sat down this morning with the intention of writing a completely different column. Something about tattoos. I’ve been trying to get one since 2015, and finally, after years of searching, I’ve found an artist with my dream art style who works in a semi-accessible building…
Without coming across like a total diva, I have to ask the Universe a simple question: Is it too much for a girl to get a personal assistant around here? And I’m not just referring to hiring caretakers — we all know that’s a huge feat by itself.
Third in a series. Read parts one and two. In the following interview, I’ll explore how SMA impacts the way people perceive me, as well as share valuable advice for families with a loved one newly diagnosed with SMA. I interview my friend, Jakeb Klein, whose…
It was time to take down the Christmas decorations. Every room was filled with boxes and coffee tables were covered with trinkets. We were working in the living room, which houses a large bookcase. We keep family photo albums, books, and special pictures in the bookshelf.
Get regular updates to your inbox.
