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Sick Kids in Love: A Look at Chronic Illness in the Life of Teens

Approximately 20 million kids and teens are living with a chronic illness. Roughly 40% of the population is living with a chronic illness. A chronic illness can last anywhere from 3 months to a lifetime and includes things like mental illness, diabetes, cerebral palsy, asthma, epilepsy and rheumatoid arthritis, just to name a few. They can be mildly uncomfortable and inconveniencing to incredibly painful and radically life changing. They can be both seen or unseen, meaning that many kids and teens are suffering and we may not ever know it because they don’t talk to us about it.

Adolescence and Chronic Illness

Sick Kids in Love is the story of two teens living with chronic illness and falling in love. Unlike the popular cancer stories of the early 2000s – I’m looking at you John Green – these kids don’t die. But they are living their lives with chronic illness, one is visible and the other is invisible. Isabel has Rheumatoid Arthritis and Sasha has Gaucher Disease. This sets up some interesting dynamics because although both teens clearly suffer from chronic illness, how they are treated and talked to and about are very different.

As the two fall in love, they are met with the every day challenges of normal adolescence compounded by the reality of living with chronic illness. They don’t just meet and fall in love, they have to learn how to be in a relationship together, something that a lot of YA lit doesn’t actually dive into that fully.

This book is moving, touching, and although the main characters may not die in the end, they will often still manage to make you ugly cry. It’s a huge step forward in disability representation in YA lit and highly recommended.

Publisher’s Book Description:

Isabel has one rule: no dating.
It’s easier–
It’s safer–
It’s better–
–for the other person.
She’s got issues. She’s got secrets. She’s got rheumatoid arthritis.
But then she meets another sick kid.
He’s got a chronic illness Isabel’s never heard of, something she can’t even pronounce. He understands what it means to be sick. He understands her more than her healthy friends. He understands her more than her own father who’s a doctor.
He’s gorgeous, fun, and foul-mouthed. And totally into her.
Isabel has one rule: no dating.
It’s complicated–
It’s dangerous–
It’s never felt better–
–to consider breaking that rule for him. 

When Books Are The Things That Save You, a guest post by Cindy Baldwin

When I was thirteen, my parents drove me to the University of North Carolina pediatric hospital and checked me in. I had a PICC line—a peripherally inserted central catheter—put in my left arm and a host of super-strength antibiotics pumped through it. We didn’t know when I’d be coming home. And, hardest of all for a young teenager who hated sleepovers and was preternaturally anxious, my parents—busy with one-year-old baby triplets at home—could only visit me during the day.


The long lonely evenings, the endless nights filled with beeping machines and blood pressure cuffs, were mine to navigate on my own.


It wasn’t the first time I was hospitalized. I’d been in and out of the hospital for my first two years of life, nearly dying as an infant until I was finally diagnosed with cystic fibrosis (CF), a life-shortening genetic disease that affects the lungs, pancreas, and other organs. Those stays, though, existed only in the haziest parts of my memory. More recently, I’d been inpatient two years before, when I was eleven—but that stay had ended up being a fluke, less than forty-eight hours long.


This, now, was going to be my first real experience with what CF patients call “a clean-out”: a two- to four-week course of intravenous antibiotics to help calm the pneumonia-like lung infections that are CF’s most persistent and intractable symptom. My doctors assured me that after a few days in the hospital I could complete the IVs at home, but they didn’t know how long that would take.


I had never in my life felt as alone as I did that first night in the hospital—like my parents, my friends, my whole life, was in another universe; like none of the people I knew or loved could possibly understand what I was experiencing. The hospital bed creaked and groaned every time I shifted. After I’d turned the lights out to try to sleep, I discovered that no matter what I did the room was twilight-bright. No matter what I did, I couldn’t seem to quiet my racing heart, the anxious blood that pounded through my veins.


I don’t remember, anymore, exactly how long that stay lasted—less than a week. What I do remember, clear as sunlight almost twenty years later, is the person who made my stay bearable: a young medical student named Neeta. Every evening, after she finished her rounds, she’d come sit by my bed and talk books. Like me, she was an avid reader; like me, she loved Lloyd Alexander’s Prydain chronicles and Madeleine L’Engle. She asked me about the books I was reading during that stay (Joan Aiken’s odd and fantastical Wolves of Willhoughby Chase series). She told me about some of her own favorites—even wrote me a list of recommendations on a notepad.


In that whole big, lonely, terrifying hospital, she was the person who made me feel human, like I’d been seen for something more than my disease, something more than the catheter in my arm and the knowledge that these hospital admissions would loom large in my future.


where the watermelonsIn my debut novel, Where the Watermelons Grow, my protagonist, Della, also feels isolated and afraid, certain that none of her friends in small-town Maryville, North Carolina, can understand what she’s dealing with as her mother’s schizophrenia worsens. Into Della’s loneliness comes newly-transplanted Miss Lorena, who’s moved to Maryville after being widowed. The first time Della meets Miss Lorena, it’s because Miss Lorena’s son is setting up a Little Free Library-esque book box to serve the town of Maryville, which doesn’t have libraries or bookstores of its own. Miss Lorena gives Della a book of Emily Dickinson’s poems, which ultimately becomes one of the things that helps Della find the strength to accept her life, her family, and her mama for just what they are, recognizing that they can still have value even if they look “different.”


As a children’s writer, I spend a lot of time thinking about children like Della, children like I was—kids who feel as though their experiences are so different, so overwhelming, that it creates a membrane of isolation between them and their peers. Kids who, so often, find solace and understanding both in books and in strong, compassionate mentors. These are the children for whom books, authors, librarians, and teachers can have an especially profound impact, showing them that they are not alone in their fear, their hardship, their loneliness.


In the past twenty years, like most cystic fibrosis patients, hospitalizations have become a frequent part of my routine; for part of college, it was normal for me to spend about eight weeks a year inpatient. These days, as a busy thirty-something and a mom to a young daughter, the idea of a week in the hospital even sounds like a relief some days. But through almost two decades, the experience of bonding with Neeta over reading during that difficult first hospital stay has stayed with me, a testament to the power of books and friendship to change the heart of a scared thirteen-year-old who could think of few things more terrifying than a night all alone in the hospital.


Meet Cindy Baldwin

Cindy BaldwinCindy Baldwin is a fiction writer, essayist, poet, and author of Where the Watermelons Grow (HarperCollins Children’s), her debut middle grade novel. She grew up in North Carolina and still misses the sweet watermelons and warm accents on a daily basis. As a middle schooler, she kept a book under her bathroom sink to read over and over while fixing her hair or brushing her teeth, and she dreams of writing the kind of books readers can’t bear to be without. She lives in Portland, Oregon, with her husband and daughter, surrounded by tall trees and wild blackberries. Learn more about Cindy at www.cindybaldwinbooks.com.


About Where the Watermelons Grow (out today, July 3, 2018)

Fans of The Thing About Jellyfish and A Snicker of Magic will be swept away by Cindy Baldwin’s debut middle grade about a girl coming to terms with her mother’s mental illness.

When twelve-year-old Della Kelly finds her mother furiously digging black seeds from a watermelon in the middle of the night and talking to people who aren’t there, Della worries that it’s happening again—that the sickness that put her mama in the hospital four years ago is back. That her mama is going to be hospitalized for months like she was last time.

With her daddy struggling to save the farm and her mama in denial about what’s happening, it’s up to Della to heal her mama for good. And she knows just how she’ll do it: with a jar of the Bee Lady’s magic honey, which has mended the wounds and woes of Maryville, North Carolina, for generations.

But when the Bee Lady says that the solution might have less to do with fixing Mama’s brain and more to do with healing her own heart, Della must learn that love means accepting her mama just as she is.

YA A to Z: Telling a Different Amputee Story, a guest post by Mindy Rhiger

It’s the second week of January, which means we’re discussing the Letter A in YA A to Z. Today we are talking about amputees with the librarian and blogger Mindy Rhiger

You can find out more about YA A to Z here.


Perhaps I shouldn’t have chosen to read Phantom Limbs so quickly after reading Shark Girl. But in my defense, who expects another shark attack story?  What are the odds?

shark girl

If you’re reading fiction, the odds are pretty good that there will be a dramatic backstory for each character. That’s what we want, right? Lots of drama? That’s how we end up with so many shark attacks in fiction. When there aren’t sharks, there are tragic accidents that loom over our amputee characters’ pasts. There’s always something, and that something has probably taken away the thing our character loved the most.

I get it. This is a good story.


But, if I’m honest, I almost stopped reading Phantom Limbs when it was revealed to be a shark attack that took Dara’s arm. While it’s true that trauma is the cause of the majority of amputations (77%) and less than 10% are congenital like mine, I am tired of reading the same story over and over again. Not all amputees are survivors of trauma, and I expect that shark attacks are the cause of very few of those traumas. Perhaps less than 10%.

That is not to say that Phantom Limbs is a bad story. Nor are the many other stories published for young readers that follow the tragic accident/recovery formula. I’ve really appreciated a lot of what some of these books had to offer. The search for identity outside what people see in Shark Girl, the difference a prosthetic device can make in A Time to Dance, and the mixed feelings that come from getting attention from your physical difference in The Running Dream.

Amputee Awareness: 10 Facts You Should Know

But I admit that what I really want are stories with amputee characters that move away from the tragic accident/recovery formula. I want the few titles I do know of that do this to be more widely read.

I want these things because I get the question “How did you lose your arm?” from kids on a daily basis.

Because I recently had a child reply to my explanation of having been born without an arm with “Um, actually, I’m pretty sure you broke your arm.”

Because most adults never ask about my arm at all. They just assume that disability equals some kind of tragedy, either past (tragic accident) or present (loss of a treasured ability or talent).

Limb Loss Statistics – Amputee Coalition

People think they know my story without ever having to listen to it. Even if they don’t ask they fill in the tragedy from imaginations fueled by pop culture, including books. The truth is that my story is not tragic, and I had no recovery or adjustment period to work through, no loss to speak of. I was born with blond hair, blue eyes, five fingers, and ten toes. It’s an interesting fact about me, but that’s it. It is—has always been—my normal. I have no phantom pain, literally or metaphorically. In my experience, that’s the hardest thing for people to understand.

Disability in Kidlit

I like to think that one day I’ll write a novel for teens that captures my experience in a way that helps people understand, but until I get around to it, I’ll continue to direct readers who are open to a different kind of amputee story to these books:

For Middle Schoolers:

Insignificant Events in the Life of a Cactus by Dusti Bowling

Red Butterfly by A.L Sonnichsen,

For High Schoolers:


Dangerous by Shannon Hale

Tripping by Heather Waldorf

Girl Out of Water by Laura Silverman.

Meet Mindy Rhiger

Mindy Rhiger is a librarian and a writer in Minneapolis. She likes to read books and spend time with her family. Also, she is a congenital amputee and uses a prosthetic arm in her daily life. You can read more about it on her FAQ: Fake Arm 101. Proper Noun Blog – Twitter

Book Review: Piper by Jay Asher, Jessica Freeburg, and Jeff Stokely

Publisher’s description

piperLong ago, in a small village in the middle of a deep, dark forest, there lived a lonely, deaf girl named Maggie. Shunned by her village because of her disability, her only comfort comes from her vivid imagination. Maggie has a gift for inventing stories and dreams of one day finding her fairy-tale love.

When Maggie meets the mysterious Piper, it seems that all her wishes are coming true. Spellbound, Maggie falls hard for him and plunges headfirst into his magical world. But as she grows closer to the Piper, Maggie discovers that he has a dark side.

The boy of Maggie’s dreams might just turn out to be her worst nightmare…

With striking illustrations from Eisner-nominated artist Jeff Stokely, mixed with Jessica Freeburg’s work on historic and legendary horrors, Piper is an exciting new departure for Jay Asher that deftly touches on the same themes of truth, guilt, and redemption that made Thirteen Reasons Why a beloved bestseller.


Amanda’s thoughts

My first thought when I finished this was that I want someone to write about disability in this book. There are interesting things going on with Maggie, who is deaf and can read lips (even, apparently, without always looking at the person, if the art is to be believed), and the deaf rat, and “the boy with the crippled leg,” the only child to escape the piper. That person is not me, because I don’t think I have the insight to fully explore that topic, but someone should look at this.

In Hameln, rats are destroying the grain harvest and storage as well as biting residents and spreading disease. The local rat catcher can’t get a handle on it, so when a stranger appears who claims to be able to play music and control the animals, the town reluctantly agrees to his terms in hopes of finally being rid of the rats. The piper and Maggie, a deaf girl used to being tormented, form a bond. He shares a bit with her about how to find a common song to control creatures. He’s interested in accountability, justice, and consequences. Maggie believes in forgiveness, acceptance, and finding the value in everyone. While the piper eventually does what he says he will do, the town’s leaders are always wondering if he’s a fraud, or has some kind of dark magic, or brought the scourge on himself. Fed up with their reluctance to pay to him, the piper eventually leads the children out of town, positioning Maggie to become the new story’s hero.

This dark story of trust, control, and revenge is a quick read with great illustrations that add so much to the story. Readers unfamiliar with the Pied Piper story will be particularly engaged in this tale, curious to see where it goes. A good addition for reluctant readers and graphic novel fans. 


Review copy courtesy of the publisher

ISBN-13: 9780448493664
Publisher: Penguin Young Readers Group
Publication date: 10/31/2017