A Horrific Social Media Post Inspires Memoir of Life With Severe Cerebral Palsy

Stories, Tips for Parents

Susan and Lexi Haas with cover of their book, The Year of the Buttered Cat

By Susan Haas
Co-Author, The Year of the Buttered Cat; a mostly true story

By the time my daughter, Lexi, was 10 months old, I knew something was amiss. She had failed to meet every motor milestone. She was unable to sit up, hold anything or keep her head upright for even a few seconds. Despite countless neurology visits and tests no one knew exactly what was going on. But around that time, something remarkable was happening, too. If I held Lexi in my lap and held her elbow steady, she could drag magnetic letters around an old metal cookie sheet and spell. It started with little words—Lexi, dog, cat—but soon she was spelling words that would be advanced for even middle schoolers.

Before she was a year old, my child—who would go on to be diagnosed with severe athetoid cerebral palsy and dystonia—could correctly spell and discern the difference between there, their and they’re, in addition to hundreds of other words. It was the beginning of a lifelong love of reading and spelling for a child who could do little to nothing on her own.

Today Lexi continues to defy the odds with the publication of her memoir for middle grade (and up!) readers. The Year of the Buttered Cat; a mostly true story (Penny Candy Books/Penelope Editions, April 2021) is the story of Lexi learning about and coming to terms with her disability, and her discovery of five extraordinary gifts that would give her a path forward in life. It’s also a story of an entire family learning to deal with grief and acceptance.

Lexi and I worked together for five years to write The Year of the Buttered Cat. Lexi can’t walk, talk, or hold anything purposefully, so the process of writing this together was often painstaking and tedious. It began as a homeschool writing project. Lexi and I would write up little vignettes of things that happened in her life—things that were funny or touching or just plain outrageous. But it wasn’t until a stranger left a horrific message on Lexi’s social media that we decided to turn the project into a book.

Lexi’s social media presence began in 2009, the year she underwent an experimental brain surgery that we hoped would help her talk or at least aide her communication. Stories about Lexi made the national news, and before long over 6,000 people were following her journey on Facebook. Nearly all the posts were supportive, but one morning my husband and I were horrified to find a stranger had left this post on Lexi’s page (trigger warning—this can be tough to read): My best friend Lexi died last night in a terrible car accident and this retard gets to live.

You can imagine the gut punch of reading that message on what was meant to be a happy and inspiring page. The message was immediately reported and deleted, and the user banned, but the anger bubbled inside me. Yes, this was a grieving teen who lashed out in the only way she could think of in the moment, but the message was loud and clear. Children with disabilities are so often considered lesser. Unworthy. For some, even disposable.

I still cry when I think about that post, even years later. There was so much misunderstanding from people who had no experience with disabilities. We knew then that we had to set the record straight. Kids with cerebral palsy are some of the most insightful, funny, remarkable people on the planet. Bar none. Their stories needed to be heard, their voices magnified.

While it was a dark moment that led us down the path of writing The Year of the Buttered Cat, the story itself isn’t dark. In fact, most people are surprised that the book is filled with humor. “Laugh-out-loud funny!” is a review we have seen a lot and we love. Life with a disability does not mean sad or serious.

Lexi is a self-professed nerd and the book is filled with references to Marvel, Star Wars and many other super hero characters she adores. And sandwiched into the humor and superhero references are some of Lexi’s deepest, thought-provoking ponderings, including, “We call people who run crazy fast and jump extra high superhuman. Where does that leave me?” and, “I get it that I’m different, but why do people assume I hate being me?”

The support we have received from the disability community has been overwhelming. Parents have written to thank us for giving their children a voice and a chance to see themselves represented in the pages of a book.

“My son had never connected to a character like he connected with Lexi,” one mom wrote. “He wants to read certain scenes over and over again.”

The Year of the Buttered Cat sold out of its first printing in the first month. It has been named a Junior Library Guild Gold Standard Selection. You can find it at pennycandybooks.com, Amazon.com, indiebound.org or at most online booksellers.

Thirteen years ago, when she was just a tiny baby, something terrible happened to Lexi Haas. Something criminal. It left her with an out-of-control body and without a voice. Now, as a precocious, superhero-obsessed pre-teen, Lexi is counting down the final 24 hours to a risky brain surgery that might help her talk or—dare she dream it?—to walk and use her hands. As surgery grows closer, Lexi finds an urgent, relentless need to share the story of the year in her life she calls The Year of the Buttered Cat.

That year on the verge of shutting out the rest of the world, Lexi began a gutsy and solitary quest to find her “missing” body.” After the family cat went missing, too, and a mysterious letter appeared, Lexi reluctantly enlisted two budding friends to aid her search. But when these friends also disappeared, Lexi had to learn new ways to reach out to the world to save her friendships and uncover the truth about what happened to her as a baby.

The Year of the Buttered Cat is based on the real-life story of Lexi Haas. In the spirit of Wonder by R.J. Palacio and Out of my Mind by Sharon M. Draper, The Year of the Buttered Cat offers empowering, powerful messages of friendship, family, loss, and the art of redefining ourselves.

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