Several years ago, an organization known as “Special Spaces” contacted us because someone nominated us for their service. The organization performs a complete bedroom makeover for kids with cancer, heart conditions, tumors, and other illnesses. Ella was nominated and chosen for a bedroom makeover.
Last week, I wrote mostly about my trip to New York City, and how my parents and I managed to drive through rush-hour traffic in Times Square. Once we made it into the heart of the city, plenty more adventures were to be had that…
Those of you who’ve followed my column for a while know I try to be honest about what I’m going through. I don’t pretend my life is perfect for many reasons, one being that … it isn’t. As nice as it is to curate a “life”…
Although Mother Nature seems to have other plans lately, the days crossed off our calendars have us inching closer and closer to summer. Ah, yes, summertime, when the weather is fine and everyone feels extra self-conscious about their “summer bods.” Achieving that “perfect” beach body is at the…
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…
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