Ella has had several surgeries in the past seven years since her diagnosis of spinal muscular atrophy (SMA). Her first was for the placement of her G-tube. This device allows us to supplement Ella’s diet and administer her medications easily. Her second surgery was…
Hello, everyone! My name is Kala, and I’d like to introduce you to the first installment of my column, “The Mermaid Chronic(les).” Mermaid stories have always been my favorite, whether they’re fairy tales or mythology. I love the wicked ones and the sweet ones. In almost every story, the mermaid…
A few days ago, I was talking with my friend Young, a fellow journalist and comic book enthusiast who now writes a column for Charcot-Marie-Tooth News. Ever since we started having conversations about our disabilities, and since I lured him…
I try to be environmentally conscious. I’ve been using my Google Home for years now, and have been switching as much of my home as possible to smart technology. My Google Chromecast lets me turn my…
For those of you who don’t follow me on Instagram and see my absurd collection of pictures of my dogs, I have two retrievers named Wish and Vince. Vince, or Vince Charming as he’s affectionately called, is an English cream golden retriever and the family dog.
The title of this column is “Five Servings of Strength,” referring to the five members of our family. There’s me (Michael, the father), Lindsay (the mother), Ava (11), Henry (10), and Ella (8). We realized soon after Ella’s SMA diagnosis that it takes the whole family’s…
I write a lot about defying the odds and being adventurous despite my disability. I’m not keen on being called an inspiration by people who don’t even know me, but nevertheless, I want to subvert the stereotype that every person in a wheelchair just sits…
I’ve always been a fan of vulnerability, I think because the concept is intrinsic to who I am as a person. I can’t leave the house without accepting vulnerability. To be seen like this, with my wheelchair and bony wrists and abdomen bloated from stomach breathing,…
One of the most dreadful, ongoing battles I’ve experienced with my doctors in recent years is my inability to gain weight. At every appointment, during every procedure, and with every hospital stay come two words that, despite knowing they’re coming, still bring an awful sense of dread: “You’re…
Henry left the house in the evening to go to a friend’s house for a sleepover. As soon as her brother had departed, Ella began complaining that she never gets to do anything fun. Finding independent activities for Ella has proven to be a…
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