by Susan Haas
I laugh. I know how many times in the last few months I have insisted—demanded—that I am in charge. But the funny thing is, the more control I’ve been given, the more I think I don’t actually have it. Maybe it isn’t anyone’s to give away.
Tucker looks at me with his head tilted, like he’s thinking he might ask me what’s so funny, but instead he stretches out on my bed and scrolls through his phone.
Mom comes back with the nurse. “We were going over the discharge form, and I thought you would want to sign it yourself.”
“Yeah!”
My arm flies out and pumps until Mom wrangles it in. She holds the pen in my hand. I sign my name. It’s official. Tucker throws my bag over his shoulder. He spins me into the hall and pops a wheelie. I laugh so hard I can barely breath. The nurse clears her throat.
Before she can say anything, the elevator door opens, and Tucker wheels me inside. I fling out an arm and press 1.
Downstairs, we pass the chapel, the cafeteria, the lab. We roll outside to bright Kansas City sunshine.
And on to the rest of my life. My voice. My story.
EPILOGUE
Age 15
It’s been two years since surgery, and although I am still in Act Three, a lot has changed. For one thing, my body is starting to listen to my brain more. A lot of the time, I can keep my head upright, and sometimes I can even sit in my wheelchair without a vest strapping me in. I have more reliable control of my eyes too.
My voice—my actual speaking voice—is a little stronger and still improving. Don’t get me wrong, it’s still hard to understand me, and I’m beat after a few words, but I think with more time and practice it will get even better.
I’ve also come a long way on Haha. My eyes still aren’t fast enough to use her in regular conversations, but I have written some of my school papers on her. I’m using her more and more for writing. It’s hard work, but I’m ninety-nine percent sure that someday I will be Lexi Haas, published author. Scratch that. If you’re reading this, I’m one-hundred percent sure.
I’ve also figured out how to email, watch YouTube videos, and play Candy Crush on Haha (yeah, that last one is a rabbit hole and gets me in trouble with Mom on a daily basis). Oh, and I can web surf! Check this out: wookietranslator.com. It’s exactly what you think. You type in a phrase in English, and it spits it out like a Wookiee would say it. Tucker is trying to figure out how to connect it to Haha so I can really talk like Chewbacca.
I’m still struggling with ways to make my computer voice sound like me. Mom and Celeste are working on it. They’ve found an organization that uses donated voices to make computerized speech sound more like a human and less like a machine. They’re trying to find out how I can get one. I want mine to have a British accent, but Dad says that people will think I’m adopted. Can you see me rolling my eyes right now?
The really cool and exciting thing is the new technology that’s coming. Right now, there are companies perfecting interfaces that will allow me to send my thoughts to a computer, and the computer will speak them for me. Do you know what this means? All my mental telepathy practice might actually come in handy. Someday, I’ll be able to just think, Go ahead. Scratch. Your. Butt. and my computer will say it. Crazy, right?!
But let’s talk about friends. Anna and Elle have both started regular school, so I don’t see them as often these days. Even with our different schedules, we still get together to do movies and hang out. In the last couple of years, I’ve had the chance to share my story at conferences and meetings with doctors, lawmakers, and families. In the process, I’ve made loads of new friends—people who can understand better than anyone because they live with kernicterus too. But Anna and Elle will always be the first. Any time I need to remember that, I squeeze my imaginary rock. Obviously.
So that pretty much brings us to today. Right now, we’re at the beach! Nearly my whole family is here. Kali couldn’t come because of her grad school schedule, and yeah, The Cat stayed home, but everyone else made it. Can you believe my parents actually sprang for an entire weekend this time? We didn’t even bring coolers.
Yesterday, I splashed in the waves in my new beach wheelchair. In this chair, I can roll right out into the water. We also rolled down the sand and collected shells.
Gus loves to jump in and out of the waves, but I think he’s ready to get back home to his cat. Lucky for him, because today we have to head back to Charlotte.
Before we go, there’s one more thing I want to do. One promise I need to keep.
“Are you ready?” Dad asks.
“Yeah!” My voice is loud and steady.
“Everybody knows their part, right?”
We all groan because we’ve been over this like fifty times.
“Okay, then. One. Two. Three.”
Mom lifts me up to stand in the sand, and everyone else grabs an arm or leg.
“Now, you have to lean forward and push off your hand,” Dad instructs.
But I know how to do it. I have done this literally a thousand times—in my head.
I lean forward. Dad guides one hand onto the sand. Kasey puts my other hand beside it. Tucker and Hannah lift my legs up and over my head. Finally, Mom pulls me up by the waist, and before I know it I’m upright again. The head rush afterwards is, I admit, unexpected.
But I did it. My perfectly imperfect, family-assisted cartwheel.
Everyone cheers—me, my family, even random people walking down the beach all stop and clap. I whoop and laugh and wobble a little. Or maybe a lot. Then I point to the sand. I’d like to do another one. Obviously.
To Our Readers
A letter from Susan
The Year of the Buttered Cat is based on the true story of Lexi and our family. Lexi and I began working on this years ago as a homeschool writing project. Lexi has always loved reading, so I wanted to give her the experience of putting her thoughts on paper to share her unique perspective. Our first stories were retellings of real things that happened in Lexi’s life that were funny, or incredible, or touching.
When we decided to put all the stories into one book, many scenes were compressed and timelines altered. Some scenes have combined events from various times in her life. In other cases, we have added or changed details to make a connected story. A few scenes, like the epic Nerf blaster battle, were completely made-up. However, the story of how Lexi’s voice was stolen when a doctor failed to monitor her newborn jaundice and the two pioneering surgeries she underwent to try and get it back is entirely true.
Lexi really does have a Facebook page with thousands of devoted and caring fans. And yes, much to my family’s horror, I really did butter The Cat.
Our process of working together to create stories has not changed over the years. Lexi gets her main points across with a combination of spelling and talking, and once I understand her idea, I ask her yes/no questions to narrow down and further define the scene. The task of putting all this information together onto a page—including word choices, sentence construction, imagery, and other writing considerations—is mine. As you might guess, it’s a painstaking process to make sure every page reflects Lexi’s true thoughts and opinions.
Lexi is getting better at using Haha, and we’re excited about new advances that can help give her, and others like her, a stronger voice. There is even a way you can help. We recently learned about the Human Voicebank Project, a service that matches donor voices with people who use augmentative communication devices. By donating a sample of your voice, you can help give an actual voice to someone who can’t speak. To see how you can become a donor, please visit www.vocalid.co/voicebank.
I asked Lexi to tell me about her hopes for this story. Her answer is below. As for me, I hope her story will help spread the word about the importance of monitoring newborn jaundice. Most children won’t have the devastating problem Lexi experienced, but all new babies with jaundice need to have their bilirubin levels tested and plotted on the Bhutani nomogram (http://lexihaas.org/bhutani/) to see
if they are at risk for developing kernicterus.
I also need to acknowledge the founding families of Parents of Infants and Children with Kernicterus (PICK), who first sounded the alarm to the medical world about the dangers of newborn jaundice two decades ago. I also want to thank Dr. Steven Shapiro, Dr. Vinny Bhutani, and the late Dr. Lois Johnson for their tireless work in preventing and treating kernicterus. You can learn more, or even donate to Dr. Shapiro’s research, at kernicterus.org. A portion of the proceeds of the sale of this book will be donated to the Kernicterus Research Center.
From Lexi:
My entire life, I have loved books. They help me jump realities in a way nothing else can. There is nothing more amazing than climbing into someone else’s skin and experiencing a completely different life for an afternoon.
I hope that by sharing my story, you can begin to understand what it’s like to live in a body like mine. My life may be very different from yours, but do you remember the part where I said I don’t want to be you? True. I like who I am, and many of my friends with physical challenges and other disabilities feel the same way.
In so many ways, I am incredibly lucky. First, I have always been surrounded by people who believe in me. Family, friends, therapists, and thousands of Facebook fans I have never even met have encouraged and cheered me on. Also, I have already had many opportunities to “be the evidence.” I have been invited to spread that message to doctors, parents, and policymakers, educating them about kernicterus and newborn jaundice.
If there’s one thing I hope you will take from this book, it is that people with disabilities—even severe ones—have interesting internal lives and a lot to offer as friends. We probably even have a lot in common with you. My hobbies are YouTube bingeing, listening to books, and then watching the movie adaptations (I almost always like the books better), crafts (when I can help and not just watch someone else do them), swimming, horseback riding, and hanging out with friends. I also love UNC basketball—Go Heels! And of course, I still love all things superhero and high action! In school, my favorites are literature, mythology, and history. How about you? Do you think you could be friends with someone like me?
Letter from Dr. Steven M. Shapiro:
I hope you have enjoyed reading this book and getting to know Lexi. I have known Lexi for most of her life—ever since her mother brought her to see me when she was a baby. Like many of the children I see in my clinic, Lexi has kernicterus.
You read in the The Year of the Buttered Cat that bilirubin inside a newborn’s body makes skin and eyes yellow, or jaundiced. Most babies have some jaundice from slightly elevated levels of bilirubin. This mild jaundice in newborn babies is normal and not dangerous. But sometimes the level of bilirubin in the blood gets too high and gets into the brain. This can be dangerous. It can damage parts of the baby’s brain and cause what Lexi has, kernicterus.
Most of the time when bilirubin gets too high, babies act sick. They get very sleepy and do not nurse well. They may arch their heads and spine backwards and have muscle tone that goes from very stiff to very floppy. Often these babies have an unusual high-pitched cry and are unable to move their eyes upward. It can look very scary! Their parents bring them to the emergency room, not because they are jaundiced, but because they are sick.
When bilirubin starts to get too high, the hospital can put these sick babies under special lights, bili lights, to help their body get rid of bilirubin. When bilirubin gets extremely high, a special type of blood transfusion can quickly lower their bilirubin. But sometimes these treatments are not done or are not done soon enough. Those babies—like Lexi—may then suffer with the lifelong condition of kernicterus.
Lexi’s case was a little unusual because she did not seem sick enough to need treatment at the hospital, but her bilirubin was still high enough to cause kernicterus. If her doctor and medical team had done a simple blood test to check her bilirubin level, they would have known it was too high. She could have been treated before it became dangerously high and caused brain damage. There are good guidelines for when to treat with the special bili lights and when to treat with the special blood transfusion. There are even guidelines to predict which jaundiced babies need close monitoring so their bilirubin levels don’t get too high. Lexi’s bilirubin was too high and went untreated for three weeks because her doctor didn’t think it was a problem.
High bilirubin damages parts of the brain that control hearing and movement. Some kids with kernicterus have a type of deafness called auditory neuropathy that causes distortion of sounds. Some kids, like Lexi, have movement disorders. Some kids have both. But in all of these kids, the thinking part of their brain works fine. Many of these kids are very smart, just like Lexi. They often have a great sense of humor and are very observant. They are regular kids in bodies that don’t work well for them.
It is important to know that not all babies who have jaundice will get kernicterus. Only a very few have so much jaundice and bilirubin that it is dangerous. By testing early and often with a blood test or a special skin sensor these babies can be treated to prevent permanent lifelong damage. Newborn jaundice needs to be managed to make certain that all babies have the same chance for a normal life. Doctors and nurses, medical providers, and parents need to be educated about jaundice and bilirubin and know how to follow simple guidelines to test for and prevent kernicterus. Everyone should know about it and help spread the word about testing newborns to prevent kernicterus from happening.
As a pediatric neurologist, I am glad I can help families and their children manage their kernicterus. I do research to learn better ways to detect and prevent it. But, in the future, I hope you and others in the public will be informed, ask questions, and also help prevent this preventable form of brain damage. If you would like to read more, please visit my website at www.kernicterus.org.
About the Authors
Susan Haas is a Charlotte, NC-based medical writer, dog lover, and painfully slow runner. She’s the number-one fan of her five adult kids and husband, Ken. Most days she would gladly trade the family cat for a Starbucks latte.
Lexi Haas is very much the spunky, sassy, superhero-obsessed teen in The Year of the Buttered Cat. She embraces her inner nerd, her love of a good romance story and her disability but if you stand too close to her wheelchair, she will pinch you.