An envelope covered in hearts and addressed to “Mom and Dad.” This envelope was kept secret for days, but there were hints that it was coming. Ella worked on its contents for days, making the perfect gift for her parents. She covered her project…
Before I go any further with this column, let me go ahead and get this out of the way: My parents are awesome, and I saw “Hamilton” on Broadway with my mom last week. Go ahead and throw your virtual pitchforks at me…
On April 10, social media exploded with pictures and posts pinned with #NationalSiblingsDay. Using it, people shared sweet or comical words about their siblings and what they mean to them. I, too, was among the millions of posts shared. However, it was difficult for me to condense…
I haven’t updated my Spinraza journey for a while because, well, nothing has happened. But we are getting down to the wire. Something is about to happen — or not happen — by the time this column is published. Since there is no access point for the…
Editor’s note: Columnist Michael Casten caps his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. Three generations of family. Six people, all affected by SMA, brought me to their thoughts. I sat…
Growing up, I only had a handful of friends with SMA. As a result of my desire to be “normal,” I didn’t show much interest in engaging in any kind of disability community. Aside from participating in the annual Muscular Dystrophy Association (MDA) Muscle Walk fundraiser with…
I deactivated my Facebook account a while back, so I’m trying to be more active on other social media platforms. This is partly to keep in touch with people and partly to curate a more professional presence online. I rarely ever take pictures, but I’ve always…
While taking care of ourselves physically is always the number one priority, it is also mindful to nurture our emotional well-being in the same regard. Living with SMA means enduring added obstacles and challenges that can, at times, become overwhelming, and so it’s important to take the time…
Editor’s note: Columnist Michael Casten continues his “Family Perspectives” series exploring how different people who surround Ella tackle the diagnosis of her SMA. Read an introduction to the series here. What is SMA? “It’s a disease that makes it so I can’t walk. As I get older I lose…
Last week, I wrote about how living with SMA requires me to be proactive. When I want something or I desire to be more independent, I often have to develop creative solutions to overcome physical limitations and logistical issues. This applies to acquiring caregivers, getting transportation, and…
