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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.

Comments

  1. I really loved this book. It’s wonderful and everyone should read it!

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