I changed my mind about writing characters with Turner Syndrome
Plus some stats from the middle grade book landscape of the past year
XO, from me to you
If I had been born very much earlier in human history, I wouldn’t have survived.
I had to have surgery for omphalocele (intestines in an itty bitty sac outside the body where the belly button should be) pretty much right off the bat. Then things got interesting.
Because I was already in the hospital recovering from that surgery, the doctors realized that my heart had swelled way beyond what it should have, and that something else was going on. That I needed another, much more intensive surgery. They very likely wouldn’t have realized this had I gone home at a regular time.
So in an ironic twist (pun intended), being born with my intestines outside my body saved my life.
How amazing are doctors, amiright? How brave does someone have to be to become a pediatric cardiac surgeon? I could never.
And honestly, besides the doctors, the real heroes of this story are my parents, who dealt with all this with their first child, in their early twenties, and then went on to have seven more kids.
Anyway.
With all of this fun medical adventure going on, one of the surgeons raised his suspicions that I might also have the genetic disorder Turner syndrome—when a baby girl is born with one X chromosome instead of two. XO instead of XX. There were some other signs, but this also would be a big reason for the cardiac issues.
Long story short, one karyotype test and several years of growth hormone shots later, I’m still alive and as ridiculous a little hobbit as ever!
Now, I’m gonna get a bit serious for a second, which I don’t honestly like to do. My personal scripture verse is Genesis 21:6, “And Sarah said, God hath made me to laugh, so that all that hear will laugh with me.”
But the thing is, for the first time in a long time, live birth rates for girls with Turner syndrome are actually going down.
The chance is never really that great to begin with. Somewhere around 98% of embryos with Turner syndrome aren’t carried to term. And now we can test for this and all sorts of other things way, way before the baby is even born.
So I found this study.
My first thought when I saw this was, “Ok, clearly not enough people have seen GATTACA.”
My second thought was, as my good friend said after I showed her this, “Well that doesn’t feel very good.”
The first book I ever wrote wasn’t about Turner syndrome. (It was about a middle aged man named George, who is still one of my favorite characters I’ve ever written.) The first several books I wrote weren’t about Turner syndrome.
Because the thing is, I didn’t want to be typecast. Pidgeon-holed. I wanted to show that I was a whole person who could write from a variety of experiences just like anyone else, not just this one in particular.
Those books didn’t pan out. I knew I needed to dig deeper and write from a place of real honesty if I was going to make this writing thing work. So I wrote What Stars Are Made Of.
It wasn’t an autobiography, but Libby was about as honest a character as I could write, including all the bits about chromosomes and genetic disorders. No wonder then that it was the book that finally got the attention of agents and editors.
But the thing is, I still didn’t want to be typecast. I still didn’t want to be “the Turner syndrome writer” or something like that. I wanted to show that I could do a lot of things.
Because girls with Turner syndrome (and other disabilities) can do a lot of things.
Like maybe train dragons or do stand-up comedy or collect monsters or fly spaceships or fall in love or…
Wait a second…
Oh my goodness!
What was I thinking??
I’d been pidgeon-holing myself. And all the other girls like me.
So yeah, that idea that I “don’t want to be the Turner syndrome writer”? Fie to that I say! Fie!
(*One side note. Don’t let these ideas pidgeon-hole you either. I decided to write about Turner Syndrome because I wanted to. If you have Turner Syndrome and you don’t want to write about it, that’s okay too. Or whatever else it is that you might be thinking about. Write what you want to write.)
I’d been slowly working towards this paradigm shift for a while, but finding this study tipped it up into my high, deliberate consciousness.
Now look. I am zero percent here to be a downer or to get political. That’s not my point.
My point in telling this story is that all of you, every single one of you, (even those of you with regular genetics I suppose) have something you are here to say. Something you are uniquely positioned to say, based on who you are, your experiences, your circle of influence, all of it. Even if it takes us a while to figure out what that is.
So now? I’ve got some short chapter books about a girl with Turner syndrome published with HarperCollinsUK, and another on the way.
Very shortly I’ll be going on submission with my picture book about a girl with Turner syndrome.
The two middle grade novels I’m working on right now—getting sample chapters ready for my agent—are about a monster collector and a stand-up comedian. They both also happen to have Turner syndrome. (The monster collector’s twin brother has Downs syndrome, too.)
Because you know what? Being a little weirdo who’s a little different is such a worthwhile, fantastic, joyful kind of life.
That’s what I’m here to say.
That’s my point.
So.
There we go. Enough self-indulgence from me, eh? Thank you for letting me tell you this story for Turner Syndrome awareness month.
Now let’s get to some tasty side-dishes to inspire and help you as you tell your story.
Onward!
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10 Side Dishes Worth Sharing
The Middle Grade Book Landscape of 2024. The amazing Sam Subity has put together insanely useful graphs explaining the stats from last years published middle grade books, including ethnicity and gender of author, characters, what genres are increasing or decreasing, etc. The stats I can’t stop thinking about are how few middle grade authors are male, and that humor is going down. I say fie to that as well!
Interested in writing humor? Check out this humor writing cheat sheat from the awesome
and make sure to subscribe to his newsletter too.I love all the Vlogbrothers videos, but this vlog on writing from horizontal video sensation John Green is just lovely.
If you’re in the stage of your career where you’re ready to look for an agent,
has some great thoughts on why you might want to think about publicity first. Then when you’ve done that, has a whole slew of excellent resources on how to write that dreaded query letter.No creative I know got into this because we care about SEO, but if you want to boost your author business here’s a very useful and even fun overview of SEO from
that doesn’t make me want to stab my eyeballs.For you educators, or just the curious, here’s a fascinating curriculum introducing kids to obituaries, and what can be learned from them.
This beautiful, heartwarming, inspiring video “The artist who couldn’t draw” is well worth your time:
Here is a fantastic list of resources on writing for the educational market from
.If you want some fantastic visual inspiration, check out the Public Domain Image Archive.
Check out
’s very interesting social media predictions for 2025. I was very surprised by the platform that came in at #2.
What are your favorite sides lately?
Teachers, librarians, and homeschool parents, I would love to do a free virtual Q&A with your class or book group! If you’re interested in scheduling a visit you can reach out to me via my website. Let me know how I can support you! I’ve also got free classroom resources to accompany each book, and make sure to check out Tools Not Rules: A Writing Guide for Young Creatives. You guys are rock stars!
Thanks for reading!
Thanks for coming along everyone! 1) Subscribe, 2) get a copy of the book bebes, and 3) keep glowing, you shining star you.
-Sarah
This is great - and I completely agree - we are all in unique positions to tell certain stories better than others bc we are so intimately entangled with them. I'm glad you haven't been pigeon-holed AND I'm glad you're writing about Turner Syndrome (fascinating anatomy you shared with us...!)
One butterfly to another, we need all the stories we can get! Keep ‘em coming!