Ambiguous Loss: Books for Youth Impacted by Chronic Illness/Mental Health

When a young person grapples with a chronic physical or mental health condition, or when someone they love does, they often face a silent & complex experience of ambiguous loss. This can look like grieving the loss of the healthy self or the healthy parent they once knew, while that person is still physically present. It’s the sorrow for the future that must now be rewritten, the daily activities that are suddenly out of reach, and the stable sense of normalcy that has been replaced by uncertainty. For a child, these feelings can be incredibly isolating, as their grief is often overlooked by a world that focuses solely on medical treatment or recovery. The stories and resources that follow aim to give voice to this unique journey, validating the mix of love, frustration, and grief that young people feel, and reminding them that their experience, though deeply personal, is not faced alone.

Ages 4-8

• I Have Asthma (Ages 3-6) The child in this story suffers from asthma, a chronic condition that sometimes produces frightening attacks. But kids learn that with proper medical supervision and treatment, asthma can be kept under control, and kids who are affected by it can live happy, active, and normal lives. As preschool and early-grades children read these illustrated What Do You Know About? Books, or have them read to them, they will be encouraged to explore their own feelings about problems that might be bothering them, or to find answers to a wide array of questions that puzzle them. Books are available in both English and Spanish language editions. **
• S is for Surgery (Ages 3-6) Written by a mom whose daughter has endured close to 20 surgeries. This fun, info-packed activity book helps kids (and their parents) prepare for surgery. This kids surgery book lists, from A-Z, everything that will happen before, during, and after your child’s surgery, so they won’t have any scary surprises. Each section has practical info kids (and parents) want to know and includes 50 activities kids can do while they’re healing at home or at the hospital—and everything is designed to make surgery less scary. **
• Some Days: A Tale of Love, Ice Cream, and My Mom’s Chronic Illness (Ages 3-6) Even when Wyatt’s mom isn’t feeling her best, he still thinks she’s a superhero! Rosie and Wyatt go on adventures every day: On sleepy days, they build a cozy pillow fort just for two. On wobbly days, Wyatt gets out Rosie’s magical walking stick and they cast spells on his toys. And on one super-special day, the whole family heads to town for the big “funraiser”! Warm and uplifting, Some Days is the perfect story to share with your child about life with multiple sclerosis—or any chronic illness. Although some days are fast and some are slow, Rosie and Wyatt fill each one with love, excitement, and fun . . . not to mention ice cream! **
• Mommy Has a Monster on Her Back (Ages 3-6) Mommy has a MONSTER problem. It’s wild, colorful, and changes depending on the day. How will Mommy learn to live with the moody monster and how can we help her? This is a gentle story to help children understand that life with chronic illness is still full and beautiful. **
• In the Blue (Ages 4-8) As one father embarks on an emotional journey, his daughter will navigate life lived in and around his depression. Most days the sun won’t be able to peek through the clouds. But with each new wave of change, love will always bond them together. This poignant and important story, with its use of color to indicate the ups and downs of one family’s emotions, is an accessible way to discuss mental illness with young readers. **
• Mama Moon: A Story about Love & Mental Health (Ages 4-8) Deeply felt and beautifully told, Mama Moon is the story of a child who muses that their mother is like the moon―ever changing, sometimes blue, sometimes bright. Mama loves warm summers and eating cherries while stargazing with Baba and Kiddo. But on her bluest of days, she can’t do the things that other mamas do. Persevering with love, no matter what phase Mama is in, this family weathers the ups and downs of a loved one’s illness. **
• Ani’s Light (Ages 4-8) This sensitive, hopeful story will help kids explore their sadness when a close family member is undergoing medical treatment, while highlighting sources of light that can bring stability during uncertain times. It is also a terrific resource for anyone who wants to understand the ups and downs of coping with a parent’s illness. Ani’s stuck in a dark cloud because his mother hasn’t been home. His friends and family try to brighten his mood, but nothing helps. When Mama finally comes back, but with her hair missing, Ani’s light gets brighter and brighter, chasing away his darkness. The unconditional love between Ani and his mother shines through as the two enjoy their precious time together, whether it’s forever, or just for now. **
• Making Happy (Ages 6-10) When Leila’s mother gets sick, lots of things change for her family. But one important thing stays the same: they still have each other, and they know how to find joy and laughter when they need it most! The poetic, uplifting story and hopeful ending are based on the author’s own experience battling cancer as the parent of young children. **

Ages 9-12

• Accidental Demons (Ages 8-12) As the youngest in a long line of witches, demons used to be no big deal. A spell and a quick prick of the finger, and a witch like Ber can summon a demon to do anything they need—clean a mess, send a message, you name it. But that was before Ber was diagnosed with diabetes. Now, each time she tests her blood sugar, accidental demons are slipping into the human dimension…and causing absolute chaos. Good thing Ber and her older sister Maeve know that every magical problem has a magical solution. They’ll just conjure a low-order demon to monitor her blood sugar! Bonus: they only have to bend one or two teeny, tiny rules. But before they know it, they’ve stumbled into deeper, more mysterious magic than they ever could have predicted. And soon it’s not just Ber’s magic but her entire coven that’s in danger. **
• Caleb & Kit (Ages 8-12) Twelve-year-old Caleb is shorter, frailer, and more protected than most kids his age. That’s because he has cystic fibrosis, a diagnosis meaning lungs that fill with mucus and a shortened lifespan. Caleb tries not to let his disorder define him, but it can be hard with an overprotective mom and a perfect big brother. Then Caleb meets Kit — a vibrant, independent, and free girl — and his world changes instantly. Kit reads Caleb’s palm and tells him they are destined to become friends. She calls birds down from the sky and turns every day into an adventure. Her magic is contagious, making Caleb question the rules and order in his life. But being Kit’s friend means embracing deception and danger, and soon Caleb will have to decide if his friendship with Kit is really what’s best for him — or her. **
• Ten Thousand Tries (Ages 8-12) Twelve-year-old Golden Maroni is determined to channel his hero, soccer superstar Lionel Messi, and become captain of his soccer team and master of his eighth grade universe…especially since his home universe is spiraling out of orbit. Off the field, Golden’s dad, once a pro soccer player himself, is now battling ALS, a disease that attacks his muscles, leaving him less and less physically able to control his body every day. And while Mom says there’s no cure, Golden is convinced that his dad can beat this, just like any opponent, they just have to try. Golden knows that if you want to perfect a skill you have to put ten thousand tries in, so he’s convinced if he can put that much effort in, on and off the field, he can stop everything from changing. But when his dad continues to decline and his constant pushing starts to alienate his friends and team, Golden is forced to confront the idea that being master of your universe might not mean being in control of everything. What if it means letting go of the things you can’t control so you can do the most good for the things you can? **
• Allergic (Ages 8-12) At home, Maggie is the odd one out. Her parents are preoccupied with getting ready for a new baby, and her younger brothers are twins and always in their own world. Maggie loves animals and thinks a new puppy to call her own is the answer, but when she goes to select one on her birthday, she breaks out in hives and rashes. She’s severely allergic to anything with fur! Can Maggie outsmart her allergies and find the perfect pet? With illustrations by Michelle Mee Nutter, Megan Wagner Lloyd uses inspiration from her own experiences with allergies to tell a heartfelt story of family, friendship, and finding a place to belong. **
• Dinner at the Brake Fast (Ages 8-12) Tacoma Jones loves working at her family’s roadside diner, the Brake Fast, pouring coffee and serving eggs and muffins to truckers all day long. But tonight, she is finally going to break out her collection of cookbooks and prepare the best dinner the state of Washington has ever seen. But her excitement is dampened when she learns that today is one of Dad’s bad days, when his depression makes it hard for him to get out of bed. Tacoma knows she can’t fix her dad’s depression. But what she can do is steal back his prized photograph of his second-best day from her nemesis, the nasty Crocodile Kyle—while also planning a dinner that is sure to brighten up his bad day. She just might need an accomplice or two to pull off the heist. . . .  **

Ages 13-18

• What About Will (Ages 13-18) Twelve-year-old Trace Reynolds has always looked up to his brother, mostly because Will, who’s five years older, has never looked down on him. It was Will who taught Trace to ride a bike, would watch sports on TV with him, and cheer him on at Little League. But when Will was knocked out cold during a football game, resulting in a brain injury—everything changed. Now, seventeen months later, their family is still living under the weight of “the incident,” that left Will with a facial tic, depression, and an anger he cannot always control. Afraid of further fracturing his family, Trace begins to cover for Will who, struggling with addiction to pain medication, becomes someone Trace doesn’t recognize. But when the brother he loves so much becomes more and more withdrawn, and escalates to stealing money and ditching school, Trace realizes some secrets cannot be kept. **
• Obsessed: A Memoir of my Life w/ OCD (Ages 13-18) A brave teen recounts her debilitating struggle with obsessive-compulsive disorder—and brings readers through every painful step as she finds her way to the other side—in this powerful and inspiring memoir. Until sophomore year of high school, fifteen-year-old Allison Britz lived a comfortable life in an idyllic town. She was a dedicated student with tons of extracurricular activities, friends, and loving parents at home. But after awakening from a vivid nightmare in which she was diagnosed with brain cancer, she was convinced the dream had been a warning. Allison believed that she must do something to stop the cancer in her dream from becoming a reality. It started with avoiding sidewalk cracks and quickly grew to counting steps as loudly as possible. Over the following weeks, her brain listed more dangers and fixes. She had to avoid hair dryers, calculators, cell phones, computers, anything green, bananas, oatmeal, and most of her own clothing. Unable to act “normal,” the once-popular Allison became an outcast. Her parents questioned her behavior, leading to explosive fights. When notebook paper, pencils, and most schoolbooks were declared dangerous to her health, her GPA imploded, along with her plans for the future. Finally, she allowed herself to ask for help and was diagnosed with obsessive-compulsive disorder. This brave memoir tracks Allison’s descent and ultimately hopeful climb out of the depths. **
• Lycanthropy and Other Chronic Illness (Ages 13-18) Teen Wolf meets Emergency Contact in this sharply observed, hilarious, and heartwarming debut young adult novel about friendship, chronic illness, and . . . werewolves. Priya worked hard to pursue her premed dreams at Stanford, but the fallout from undiagnosed Lyme disease sends her back to her childhood home in New Jersey during her sophomore year—and leaves her wondering if she’ll ever be able to return to the way things were. Thankfully she has her online pen pal, Brigid, and the rest of the members of “oof ouch my bones,” a virtual support group that meets on Discord to crack jokes and vent about their own chronic illnesses. When Brigid suddenly goes offline, Priya does something out of character: she steals the family car and drives to Pennsylvania to check on Brigid. Priya isn’t sure what to expect, but it isn’t the horrifying creature that’s shut in the basement. With Brigid nowhere to be found, Priya begins to puzzle together an impossible but obvious truth: the creature might be a werewolf—and the werewolf might be Brigid. As Brigid’s unique condition worsens, their friendship will be deepened and challenged in unexpected ways, forcing them to reckon with their own ideas of what it means to be normal. **
• Five Feet Apart (Ages 13-18) In this #1 New York Times bestselling novel that’s perfect for fans of John Green’s The Fault in Our Stars, two teens fall in love with just one minor complication—they can’t get within a few feet of each other without risking their lives. Can you love someone you can never touch? Stella Grant likes to be in control—even though her totally out of control lungs have sent her in and out of the hospital most of her life. At this point, what Stella needs to control most is keeping herself away from anyone or anything that might pass along an infection and jeopardize the possibility of a lung transplant. Six feet apart. No exceptions. **
• Can’t We Talk About Something More Pleasant (YA) The #1 New York Times bestselling award-winning graphic memoir by New Yorker cartoonist Roz Chast about her parents’ final years, now with the author’s celebrated new epilogue. In her first memoir, New Yorker cartoonist Roz Chast brings her signature wit to the topic of aging parents. Spanning the last several years of their lives and told through four-color cartoons, family photos, and documents, and a narrative as rife with laughs as it is with tears, Chast’s memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents. **
• What Doesn’t Kill You (YA) Tessa Miller was an ambitious twentysomething writer in New York City when, on a random fall day, her stomach began to seize up. At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital―beginning a years-long nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better. Today, an astonishing three in five adults in the United States suffer from a chronic disease―a percentage expected to rise post-COVID. Whether the illness is arthritis, asthma, Crohn’s, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications. Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all. *

If you are interested in more resources on ambiguous loss, head over to our Ambiguous Loss Resource Hub.

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