I have had the privilege of being one of the very first readers of my friends Susan and Lexi Haas’s book The Year of the Buttered Cat set to be officially released in April 2021 and was asked very nicely to write a review of their book, which was honestly one of the cutest and most thought provoking things I have read in awhile… and yes there is an actual buttered cat in the story too! But before we get into this amazingly mostly true book, I should probably share how I became friends with Susan and Lexi Haas and explain a few more things about dystonia caused by cerebral palsy (CP) or a brain injury (also known as secondary dystonia). Both Lexi and I have cerebral palsy and dystonia, which basically means our bodies do the exact opposite of basically anything we want them to do - twisting every which way except the right way but we are extremely bright. Unlike me, Lexi’s cerebral palsy was caused by her untreated newborn jaundice (yellowing of the skin caused by too much bilirubin) leading her to develop kernicterus. When I was around 12, my dystonia and abnormal movements got much much worse. Out of the blue I started shaking, similar to a seizure but awake and aware. My body would shake so much I would ask my mom and dad to sit on me to make it stop, which it didn’t. It started out a day or two and then it would stop, then sometimes weeks. It was like I was running in a marathon, I couldn’t stop moving, couldn’t sleep or eat. I was in and out of hospitals and doctors didn’t know what was going on since cerebral palsy doesn’t get worse and I clearly was. I was diagnosed with dystonia (similar to Parkinson’s - see my dystonia awareness post here). I tried numerous medications some would work short term but eventually nothing was helping and at age 14 I had deep brain stimulation (DBS) surgery and two deep brain stimulators implanted. It helped with my movements, but my speech got worse. DBS works instantly in patients with Parkinson’s (you can see them stop shaking instantly) but with dystonia there is a lot of different programming involved. It’s always a guess and wait and see for results, some have been ok and some bad so we’ve learned to accept the settings in fear that I would be worse. DBS for dystonia is also often preformed more frequently and with more success for primary dystonia, dystonia without a brain injury / was caused by genetics, than secondary dystonia. Before I had DBS I found an article from ABC news about a little girl in North Carolina named Lexi with CP specifically caused by kernicterus and who had DBS at age 7. I reached out to Lexi’s mom Susan and also gave the article to my mom, dad and all my doctors at A.I. DuPont Children’s Hospital who all thought I was completely nuts for wanting DBS. Okay then! Now back to the book! Like I said, The Year of the Buttered Cat was honestly one of the cutest and most thought provoking things I have read in awhile. It really made me smile and I mentioned to Susan that it reminded me of Wonder by R.J. Palacio and in my opinion has the potential to be as big as a hit as Wonder. The Year of the Buttered Cat has a dual timeline, which was really cool, with one timeline being told by 13 year old Lexi during the 24 hour countdown to her second deep brain stimulation surgery, and the second timeline being the year Lexi discovered what happened to her and that she would have a disability (Lexi at ages 5 and 6). I could really relate to Lexi at both ages and loved her deep inner thoughts as well as her relationships with her family and friends and of course the wizarding world of Harry Potter. I promise I will try to not give spoilers or at least not too many, but to try to make things run smoother I think I might break down what I loved about the story from both ages of Lexi’s story. I loved that Lexi’s voice was front and center for the entire book and her love of Harry Potter was pretty cool too (I’m not really a Harry Potter fan but my super cool neurologist is). Lexi ages 5 and 6 When Lexi was five years old and on the verge of shutting out the rest of the world, she began a lonely quest to find her “missing” body. After the family cat went missing, too, and a mysterious letter appeared, she 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.
Lexi age 13 Having undergone DBS around the same age, I really understood all the hopes, fears and all of the emotions Lexi felt. You have so much hope but at the same time it is scary. What if this does not work? What if something goes wrong? What if it makes things worse? I love the built-up suspense of the 24-hour countdown to surgery too. This book is a great read for anyone because we all can relate to times when we feel our voice isn’t heard. Following Lexi through her journey shows life from a perspective that others often overlook. It can be lonely to be unable to communicate at the speed of those around you and we all need to be more patient and understanding regardless of how we communicate or how we move. Overall I do highly recommend this book and hope you will check it out and end up enjoying it as much as I did! You can pre-order your very own copy of The Year of the Buttered Cat here: https://www.pennycandybooks.com/shop/buttered-cat Lexi and Susan have also made a short promo video promoting their book The Year of the Buttered Cat https://www.youtube.com/watch?v=_t5GR9OOHNU&feature=youtu.be And if you are interested in following more of Lexi’s adventures she also has her own website http://lexihaas.org
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February 2022
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