Take Five: Chronic Illness in Middle Grade Novels

As part of our Mind the Middle project focusing on middle grade books, I’m going to try to do weekly Take Five lists, which is to say, five books on a certain theme. 

These Take Five lists can help you with collection development, displays, reading lists, and more. I have a pretty giant list of potential Take Five themes, but if there’s something you’re desperate for a list for, let me know! All descriptions come from the publishers.

Today’s list is about chronic illness. Lately I’ve been noticing more representation of chronic illness in stories. It seems like books have been better about portraying (physical and developmental) disabilities, mental illness, and neurodivergence for a while now, but we haven’t seen as much of other chronic illnesses (cystic fibrosis, Crohn’s disease, juvenile arthritis, etc). Given how many children live with a chronic illness or condition, it’s nice to see more characters reflecting this reality.

The Great Upending by Beth Kephart (ISBN-13: 9781481491563 Publisher: Atheneum/Caitlyn Dlouhy Books Publication date: 03/31/2020, Ages 11-14)

When a troubled children’s book author moves to their farm, two kids with troubles of their own hatch a scheme to swipe the ending of the final book in a bestselling series to get a reward from the book’s publisher in this gorgeously written novel in the tradition of Wonder and Out of My Mind.

Twelve-year-old Sara and her brother Hawk are told that they are not to bother the man—The Mister—who just moved into the silo apartment on their farm. It doesn’t matter that they know nothing about him and they think they ought to know something. It doesn’t matter that he’s always riding that unicycle around. Mama told them no way, no how are they to bother The Mister unless they want to be in a mess of trouble.

Trouble is the last thing Sara and her brother need. Sara’s got a condition, you see. Marfan syndrome. And that Marfan syndrome is causing her heart to have problems, the kind of problems that require surgery. But the family already has problems: The drought has dried up their crops and their funds, which means they can’t afford any more problems, let alone a surgery to fix those problems. Sara can feel the weight of her family’s worry, and the weight of her time running out, but what can a pair of kids do?

Well, it all starts with…bothering The Mister.

No Matter the Distance by Cindy Baldwin (ISBN-13: 9780063006447 Publisher: HarperCollins Publishers Publication date: 02/21/2023, Ages 8-12)

An unexpected animal companion helps a girl with cystic fibrosis learn to write her own story in this captivating novel in verse by award-winning author and disabled activist Cindy Baldwin.

Penny Rooney has cystic fibrosis, which means she has to do breathing treatments to help her lungs work. Some days, it seems like her CF is the only thing Penny knows about herself for sure.

From her point of view, everyone around her can make sense of their place in the world. So why can’t Penny even begin to write a poem about herself for school?

Then during spring break Penny spots something impossible in the creek behind her house: a dolphin, far from its home. Penny names the dolphin Rose and feels an immediate bond, since the dolphin is also sick.

But as Penny’s CF worsens, she realizes that Rose needs to return to her pod to get better. Will Penny be able to help guide Rose back to the ocean, even if it means losing her friend?

This heartwarming story, which marks the first time an author with cystic fibrosis is writing a protagonist with CF, will transport readers into a world full of friendship, family, and powerful self-discovery.

Aniana del Mar Jumps In by Jasminne Mendez (ISBN-13: 9780593531815 Publisher: Penguin Young Readers Group Publication date: 03/14/2023, Ages 8-12)

** Four starred reviews!**

A powerful and expertly told novel-in-verse by about a 12-year-old Dominican American swimmer who is diagnosed with Juvenile Arthritis by an award-winning poet.

Aniana del Mar belongs in the water like a dolphin belongs to the sea. But she and Papi keep her swim practices and meets hidden from Mami, who has never recovered from losing someone she loves to the water years ago. That is, until the day Ani’s stiffness and swollen joints mean she can no longer get out of bed, and Ani is forced to reveal just how important swimming is to her. Mami forbids her from returning to the water but Ani and her doctor believe that swimming along with medication will help Ani manage her disease. What follows is the journey of a girl who must grieve who she once was in order to rise like the tide and become the young woman she is meant to be. Aniana Del Mar Jumps In is a poignant story about chronic illness and disability, the secrets between mothers and daughters, the harm we do to the ones we love the most—and all the triumphs, big and small, that keep us afloat.

The Year My Life Went Down the Toilet by Jake Maia Arlow (ISBN-13: 9780593112960 Publisher: Penguin Young Readers Group Publication date: 08/01/2023, Ages 10-14)

A hilariously honest book about surviving middle school while navigating a chronic illness from the Stonewall Honor-winning author of Almost Flying.

Twelve-year-old Al Schneider is too scared to talk about the two biggest things in her life:

1. Her stomach hurts all the time and she has no idea why.
2. She’s almost definitely 100% sure she likes girls.

So she holds it in…until she can’t. After nearly having an accident of the lavatorial variety in gym class, Al finds herself getting a colonoscopy and an answer—she has Crohn’s disease.

But rather than solving all her problems, Al’s diagnosis just makes everything worse. It’s scary and embarrassing. And worst of all, everyone wants her to talk about it—her overprotective mom, her best friend, and most annoyingly her gastroenterologist, who keeps trying to get her to go to a support group for kids with similar chronic illnesses. But, who wants to talk about what you do in the bathroom?

The Year My Life Went Down the Toilet is a wildly funny and honest story about finding community, telling the truth even when it’s hard, and the many indignities of middle school life.

Not Quite a Ghost by Anne Ursu (ISBN-13: 9780062275158 Publisher: HarperCollins Publishers Publication date: 01/16/2024, Ages 8-12)

From the award-winning author of The Troubled Girls of Dragomir Academy comes an unforgettable and deeply personal story of the ghosts that surround us—and the ones we carry inside.

The house seemed to sit apart from the others on Katydid Street, silent and alone, like it didn’t fit among them. For Violet Hart—whose family is about to move into the house on Katydid Street—very little felt like it fit anymore. Like their old home, suddenly too small since her mother remarried and the new baby arrived. Or Violet’s group of friends, which, since they started middle school, isn’t enough for Violet’s best friend, Paige. Everything seemed to be changing at once. But sometimes, Violet tells herself, change is okay.

That is, until Violet sees her new room. The attic bedroom in their new house is shadowy, creaky, and wrapped in old yellow wallpaper covered with a faded tangle of twisting vines and sickly flowers. And then, after moving in, Violet falls ill—and does not get better. As days turn into weeks without any improvement, her family growing more confused and her friends wondering if she’s really sick at all, she finds herself spending more time alone in the room with the yellow wallpaper, the shadows moving in the corners, wrapping themselves around her at night. 

And soon, Violet starts to suspect that she might not be alone in the room at all.

Filed under: Take 5