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Turner Syndrome and Representation, a guest post by Sarah Allen

I was born XO, which does not stand for hugs and kisses.

Lots of things became chaotic when I was born. I had something called omphalocele, which means my intestines were sticking out through a hole in my stomach where my belly button should have been. I was rushed to surgery before my mom was able to hold me. In the NICU, recovering from surgery number one, doctors discovered that there was another problem, one even more life-threatening. There was a constriction in my aortic valve, causing my heart to pump so hard it was growing way beyond safe size. This meant another surgery.

Oddly enough, it was something as simple as my uniquely puffy hands and feet that tipped one of my many incredible doctors off to the real underlying cause of all the medical drama. They ran some tests and confirmed the doctor’s suspicion. My dramatic entry into the world was the result of a genetic disorder called Turner syndrome.

An average person is born with 46 chromosomes. In girls, two of those chromosomes are XX. Not in girls with Turner syndrome. Turner syndrome means you are born with only one X instead of two. A missing X, for a total of 45 chromosomes.

XO.

There are a few core things that come with having Turner syndrome. Short stature is one, and I took growth hormone shots starting at age eight that helped me reach my happy five-foot-four. Another aspect is infertility. Many also deal with heart or kidney problems, some vision or hearing loss, and physical characteristics such as low-set ears, wide neck, and barrel-shaped ribs. It can also come accompanied by learning disabilities such as Non-verbal Learning Disorder.

Here’s the thing, though. With some support and determination, there’s nothing in this unique set of challenges to stop a Turners girl from living a normal, happy, even thrilling life of her choosing. My parents signed me up for the best school they could find, and put me in extracurriculars the same as all my other siblings. They expected self-sufficiency and hard work, and I learned from them that nothing could stop me from achieving what I wanted in my life. (Like publishing a book, maybe?)

But here’s the other thing: I never once saw myself represented in the books I read, or in any other media for that matter. I loved spunky girls like Ramona and Anne Shirley, but none of the characters ever looked quite like me, or was thinking about the uncommon challenges I was facing.

To be honest, this is not terribly surprising. Only 1 in 2500 girls is born XO. Only 1-2% of embryos with monosomy X are even carried to term, resulting in 10-20% of all miscarriages. But I knew girls like me were out there. In my gut I believed our stories mattered just like anyone else’s.

It took several other novels and help from professors in my MFA program at Brigham Young University, but I finally felt ready to tell a story about a girl with Turner syndrome.

And this is how Libby and WHAT STARS ARE MADE OF was born. I didn’t see my physical story, my body, represented in any of the books I read. Honestly, I felt like a pretty normal kid, a pretty normal person, and I would have given anything to find a book that told me, yeah, I was. I wanted to offer that to other readers.

STARS is about a girl who loves with everything she has, and never stops trying to help the most important people in her life despite her challenges. STARS is about the value inherent in every individual, no matter their circumstances or limitations, full stop. I wanted to reflect that individual worth to anyone who happened to pick up my book, no matter who they are, where they live, or what they look like.

C.S. Lewis said, “We read to know that we are not alone.” This has always been my writing mantra. I wrote this book for the girls like me, and for any kid who feels themselves on the fringes of “normal.” I wrote it as a celebration of weirdness and individuality. I want every reader who picks up this book to leave assured of one important thing: you are what stars are made of.

Sarah grew up in Utah and currently lives in the Pacific Northwest. Like Libby in WHAT STARS ARE MADE OF, she was born with Turner syndrome. She has an MFA from Brigham Young University, and in her spare time can be found writing poetry and watching David Attenborough documentaries or Pixar movies. She is a hardcore fan of golden retrievers, leather jackets, and Colin Firth.

WHAT STARS ARE MADE OF
Farrar, Straus and Giroux (BYR)
FSG Books for Young Readers
On Sale: 03/31/2020
ISBN: 9780374313197
Ages 10-14

Sarah would love it if you could support her indie, Third Place Books, which is offering signed copies of WHAT STARS ARE MADE OF.

Writing on Wheels, a guest post by Kit Rosewater

I wasn’t an athletic kid.

That’s what I said to people if they asked what I was into. I said I was a theatre geek, a book nerd, one of those kids who only worked out when lifting a stack of books or swinging around a fake plastic sword.

Those were lies, of course, though I didn’t quite realize it at the time.

As a younger kid—think elementary school age—I actually loved being athletic. I won medals at the annual “jog-a-thons” my school held in second and third grade. When I read books like Bridge to Terabithia, I related hardcore to Jesse’s dreams of winning his classmates’ unofficial morning race. I rode bikes on mountain trails with my much more experienced older cousin and had the scars from falling over and over to prove it. But more than any other activity, I loved roller skating at the YMCA with my sister every day after school in fourth and fifth grade.   

We would snap our fingers and shake our hips whenever Will Smith’s jam “Getting’ Jiggly Wit It” came over the speakers. We learned how to crouch low to gather speed, cross one skate over the other, skate backward, the whole caboodle. Those were some of the best afternoons of my childhood.

I don’t remember when the transition happened between me loving both the arts and sports to me thinking I had to choose between one or the other. I suspect it had to do with that phenomenon a lot of middle school kids face, where they feel like they need to fit into a label… or else they won’t fit in anywhere. 

In sixth grade the whole grade level had to perform two weeks’ worth of physical ability tests for our PE groups. Out of groups A (for the super sporty kids), B (the pretty sporty kids), C (the kids with nothing special going on), and D (the kids who needed serious coordination help) … I got placed in C. 

Whelp, guess I’m not an athlete, I thought. 

I tucked my skates, helmet, and knee and elbow pads away onto a high shelf in the garage. I picked up my books and busied myself with other creative, artsy activities. 

As I grew up in middle school, then high school, then college, my labels grew and solidified around me. Every time I felt breathless on a run with friends, or missed a basket when shooting hoops at the park, I hid behind my self-imposed label. 

“I’m not athletic!” I would whine. And then I’d shuffle off before someone could challenge what that kind of declaration even meant.

For years I learned how to push myself in reading and critical thinking. I grew in my craft as a writer. I found out that just because I was interested in something (like being an author), that didn’t mean I was inherently good at it. I had to work really hard at every stage, but I slowly learned that with enough practice, patience, perseverance, I could figure out how to steadily improve in anything I set my mind to. 

Fast forward to early 2017, when I had just moved to Austin, Texas and was playing host to friends from Albuquerque, New Mexico. Under an Austin page of events, I found two roller derby leagues operating with open bouts (roller derby games) outsiders could buy tickets to go see.

From the moment those derby teams hit the track, I was hooked

I had never seen such diversity in a team of players before. Suddenly it didn’t seem to matter how tall or short you were, how much you weighed, how muscular your arms were… anyone could be lacing up and rolling onto the rink. I could be lacing up! Roller derby had taken everything I thought I knew about sports and the types of people who called themselves “all-stars” and turned it all upside down. I had to know more.

Meanwhile, I was still waist-deep in my efforts to become an author. I was working on a different project that had started to lose its shiny appeal. My agent and I discussed setting that project aside and trying something new. This time as I mulled over ideas, I turned over my childhood memories and experiences like stones. I tapped on them, wondering which ones were duds and which were geodes, full of glimmering possibility. 

I remembered how much I had loved running, and biking, and most of all—skating—when I was a kid. 

I finally decided not to choose between labels anymore. I had found my next big project. 

If young readers take any one point away from The Derby Daredevils series, I hope it’s that they realize they don’t need to choose what kind of person they are. After reading Book 1, they might want to lace up their own pair of skates. Or not! Whatever they choose to be into and excited about, there’s plenty of room for them to explore lots of activities and interests and hobbies. Being good or not so good at something right away doesn’t determine how much we get to love it. We can be book nerds and runners, theatre geeks and MVPs…

…readers and daredevils. 

Meet Kit Rosewater

Kit Rosewater writes books for children. She lives in Albuquerque, New Mexico with her spouse and a border collie who takes up most of the bed. Before she was an author, Kit taught middle school theatre and high school English, then worked as a children’s bookseller. She has a master’s degree in Children’s Literature from Hollins University. Books 1 & 2 of her debut middle grade series The Derby Daredevils roll out in Spring and Fall 2020 through Abrams. Catch her online at kitrosewater.com or @kitrosewater.

About The Derby Daredevils: Kenzie Kickstarts a Team

The first in a highly-illustrated middle grade series that celebrates new friendships, first crushes, and getting out of your comfort zone. 

Best friends Kenzie “Kenzilla” Ellington and Shelly “Bomb Shell” Baum are counting down the days to their roller derby debut. It looks like their dream is coming true when Austin’s city league announces a junior league. But there’s a catch. To try out together, the Dynamic Duo will have to form a team of five players… in just one week! 

As they start convincing other girls that roller derby is the coolest thing on wheels, Kenzie has second thoughts. Why is Shelly acting like everyone’s best friend? Isn’t she supposed to be Kenzie’s best friend? And things get really awkward when Shelly recruits Kenzie’s neighbor (and secret crush!) for the team.

With lots of humor and an authentic middle grade voice, the first book of this empowering series follows Kenzie, Shelly, and the rest of the Derby Daredevils as they learn how to fall—and get back up again.

ISBN: 978-1-4197-4079-4
Illustrator: Sophie Escabasse

Publisher: Abrams Books
Publication date: 03/24/2020
Age Range: 8 – 12 Years

Kit would love if it you would support one of two independent bookstores in this tough time for everyone: Bookworks of Albuquerque or Bookpeople of Austin, TX.