Author, daughter, friend, disability advocate – Meet Lexi Haas
Lexi Haas has so much to say, she isn’t holding back and that’s a very good thing.
Charlotte-based mom and daughter writing duo, Susan and Lexi Haas, pull back the curtain on their lives in “The Year of the Buttered Cat: A Mostly True Story,” rereleased by Little, Brown and Company.
Lexi, now 22, has a rare, severe form of cerebral palsy, which was caused by newborn jaundice. She doesn’t walk or talk, but communication, independence, and advocacy? She has those things in abundance. The whys and hows and what’s nexts – those are all part of the book, and you won’t want to miss what Lexi and Susan have to share. But first, they answered a few questions for us.
“The Year of the Buttered Cat: A Mostly True Story” (Little, Brown and Company Books for Young Readers) by Susan Haas with Lexi Haas also includes discussion and activity guides for ages 9 – 11 and ages 11 – 14. Keep up with Lexi at instagram.com/lexi.haas02, facebook.com/TheRealLexiHaas and lexihaas.org.
Susan, what do you hope parents take from this book and Lexi’s story?
The original motivation for writing down Lexi’s story came from a social media bullying incident. I won’t go into details here, but that incident opened our eyes to the reality that there are still people who think disabled lives are lesser lives. We wanted to set the record straight on that for sure. I also wanted to highlight the dangers of newborn jaundice, because that’s totally downplayed by mainstream medicine. But during the writing process, another unexpected message evolved – that grieving is messy and personal and also an essential part of moving on to let go of the life you thought you would have so you can embrace the one you’ve got.
I think a lot about the mental health of parents, especially new parents dealing with an unexpected diagnosis who are bombarded with both direct and indirect messages to “count their blessings” and embrace this new life – but little is said about taking time to grieve. I think it’s a step we can’t skim over. We can’t just leapfrog straight to happiness. If that grief is bottled up and left to fester, it will destroy your health and relationships and blind you to the beautiful, touching and even funny moments that are still happening around us.
When Lexi and I were writing, my other kids said, “Do you really want to share that whole buttered cat thing with the world?” and I get it; it’s a little wacky. But I also think that’s OK and that we should normalize going a little off script when it comes to grieving. Find your path to happiness, love and forgiveness. And don’t worry what it looks like to the outside world.
Lexi is indeed a person of determination (saw that on your Instagram!)! What would you want readers to know about being an unintentional medical pioneer – you (both of you) have been willing to step out in ways that must require you to take leaps of faith.
The year leading up to and immediately after Lexi’s first deep brain stimulation surgery was nerve wracking. She was the first person in the world to undergo the procedure for her condition so there was no blueprint, no one to tell us what could happen – both good and bad. During the day, I was filled with hope about the potential for what the surgery could do for her, especially regarding her communication. Then at night, my fears took over and I would lie awake for hours obsessing about risks and complications. And for Lexi, I didn’t realize until later how much pressure she felt for the surgery to be successful. She thought if she didn’t improve enough, she would be letting down other parents around the world who were watching her story unfold and hoping the procedure could help their child, too. That’s a lot of pressure for a 7-year-old.
Lexi, are there more books coming? What does it mean to be able to put your story out to a wider audience?
Yes! We have already sold a second book to Little Brown Young Readers. This one is middle grade fiction but also features main characters with disabilities. I hope that with each story, readers get a little better idea what it’s like to live life in a body that works very differently from their own. Mom and I also love doing school visits and meeting readers in person, so this re-release means we will have more opportunities to do that, which is very cool!
What does it mean to you to be able to do this with your mom?
I think Mom and I work well together because we balance each other. She’s a perfectionist and I’m more of a creative, so during the writing process we can definitely annoy each other at times, haha, but at the end of the day we both appreciate what each of us brings to the process. I am also very protective of the disability experience and appreciate that Mom is all about getting that right and giving me authentic representation. I think at some point she might write some on her own and I hope that I will be able to do the same, but for now, I love collaborating with her.
Give a shout out to some of your favorite books for young readers – what authors inspire you?
These days I enjoy reading a wide range of stories from diverse authors. Aiden Thomas (“Sunbearer Trials”), TJ Klune (“The House in the Cerulean Sea”), Tracy Deonn (“Legendborn”), Angie Thomas (“The Hate U Give”) are just a few of my favorites. I think it’s important to say that while I don’t identify as gay, transgender or a person of color like many of these authors, I do identify with the underlying experiences of these characters, of feeling different and sometimes other. I think that’s the beauty of diverse literature that people who have censored these books don’t understand. At least for me, one of the reasons I’m a happy person is that I feel like a connected person – even to people that on the surface I have little in common with. That’s such a cool revelation to make as a young person. Reading about lives that are very different from our own is a great way to have that life-changing epiphany.
Anything else to share? Thank you both so much!
We’re so grateful our agent (Karen Grencik at Red Fox Literary) and our editor (Andrea Spooner at LBYR) believed in this story enough to bring it back to market. It’s a huge risk to take on a book that has already been published. It’s really nothing short of a miracle that it worked out for us.
This article originally appeared on Greenville News: ‘The Year of the Buttered Cat’ Q&A with Susan and Lexi Haas