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Programs

The Pillar Project

The Kara Fund

The Kara FundThe Kara Fund strives to enhance the quality of life of children with life-threatening diseases, and their families, by providing material items, goods and services that offer physical and emotional support for them in their time of distress. We will advocate for pediatric patients and palliative care initiatives where possible and appropriate.

The Kara Fund supports local patient families through The Pillar Project, NICU Program for Overnighters, Comfort Care Program, Home Care Program, and Family Care Program.

The Kara Fund is the primary support of the CHOICES Pediatric Palliative Care Program. The Kara Fund shares the spirit and love that Kara MacDougall exuded every day.

This organization strives to enhance the quality of life of children with life-threatening diseases and their families through many programs (thekarafund.org/programs), including the following:

Always Love Photography

Always Love is a nonprofit organization founded by Jennifer Phillips of Root and Wander Photography, which gives parents photos to remember their children by.

Please complete the Always Love Photography Survey.

Smallprint Memory Treasures Program

 Through the Crouse NICU, the Smallprint Memory Treasure Program offers the opportunity to create personalized handprint and footprint jewelry for the loved ones of infants with life-limiting illness in the Neonatal Intensive Care Unit at Crouse.

The Family Care Program

The Family Care Program through The Kara Fund offers direct support to families in crisis with a seriously ill child.

CHOICES Families & Loved Ones Facebook Group

CHOICES Families & Loved Ones Facebook group is for the families and loved ones of children who have received care at any time from the CHOICES Pediatric Palliative Care Team at Upstate Golisano Children’s Hospital. We keep families up to date on events and news through this group. Families and loved ones may connect with others in this group, though it is not required.

Upstate CHOICES Loving Caregiver Support Group and Bereaved Caregivers Support Group

These groupes meet over Zoom on a monthly basis. These are informal virtual meetings that allow parents and caregivers with shared experiences to connect and support one another. If you are interested in these groups, you can email Majeskij@upstate.edu to request to be added to the email and/or text notification lists to receive the links. There is no cost to these groups and they do not require formal registration.

The Pillar Project

The mission of The Pillar Project is to promote medical coping and bereavement support by providing individualized books and resources that honor and support patients and their loved ones affected by the child's serious illness or by grief. Through The Pillar Project, we hope to offer helpful information, resources, and opportunities to enhance communication and coping during difficult times.

This program is graciously funded through The Kara Fund and extends to supporting parents/caregivers, siblings of all ages, grandparents, and other close family members and loved ones who may benefit from these resources.

Have you received a Pillar Project package or have suggestions for the program?
Share your feedback in The Pillar Project Survey.

Jill Majeski, PsyD
Founder, The Pillar Project

Reading Resources

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Kids & Teens Medical Coping

TitleAuthorAudienceLink
Cancer Daily LifeCarola Schmidt (Author), Rafael Antonio (Illustrator)AYA; Cancer Daily Life is a bittersweet collection of single and double-frame strips that only readers who are highly involved with the C world could relate to. It’s sometimes cute and sweet, sometimes acid, sometimes trivial, sometimes funny, just like daily life.Link
Living Well With My Serious Illness (Workbook)Marge HeegaardAges 8-12; An art therapy book helping children cope with the early stages of a serious illness.Link
The Chronic Pain and Illness Workbook for Teens: CBT and Mindfulness-Based Practices to Turn the Volume Down on Pain (Workbook)Rachel Zoffness, PhD (Author), Elliot J. Krane MD (Foreword)AYA; With this powerful and easy-to-use workbook, you’ll learn how pain affects both your mind and body, how negative emotions can make pain worse, and strategies to help you turn the volume down on your pain, so you can go back to enjoying activities that you love. You’ll also learn mindfulness and relaxation exercises, including belly breathing and body scan to help manage pain in the moment.Link
Positive Coping With Health Conditions: A Self-Care Workbook (PDF Online)Dan Bilsker, PhD, Rpsych, Joti Samra, PhD Rpsych, Elliot Goldner, MD, FRC (P)AYA; Positive Coping with Health Conditions (PCHC) was developed by scientist-practitioners with the Consortium for Organizational Mental Healthcare. It was developed in consultation with a range of stakeholders concerned with how individuals deal with health conditions, including patients, physicians, psychologists, nurses, rehabilitation professionals and researchers.Link
Beyond the Rainbow (Workbook)Marge HeegaardAges 4-8; An art therapy book which helps children cope with a life-threating illness. Children are encouraged to express in pictures what they are often incapable of expressing in words.Link
You Weren't with MeChandra Ippen (Author), Erich Ippen (Illustrator)Ages 3-11; Little Rabbit and Big Rabbit are together after a difficult separation, but even though they missed each other, Little Rabbit is not ready to cuddle up and receive Big Rabbit’s love. Little Rabbit needs Big Rabbit to understand what it felt like when they were apart.Link
The Chronic Pain and Illness Workbook for Teens: CBT and Mindfulness-Based Practices to Turn the Volume Down on PainRachel Zoffness MS PhD (Author), Elliot J. Krane MDAYA; With this powerful and easy-to-use workbook, you’ll learn how pain affects both your mind and body, how negative emotions can make pain worse, and strategies to help you turn the volume down on your pain, so you can go back to enjoying activities that you love.Link
My Friend Jen: A Little DifferentJenica Leah  (Author)Ages 3-12; “There is nothing that my friend Jen can’t do, but on the inside, she’s a little different to me and you.” As Jen's friend tells us a story, you will learn a few simple tips on how to stay well with Sickle Cell. A Little Different is the first in the series of My Friend Jen books. The series of children's books aims to create better understanding and awareness of the blood disorder Sickle Cell Anaemia in a fun and informative way.Link
Right Now I Am Fine Dr. Daniela Owen (Author), Gülce Baycik (Illustrator)Ages 4-10; This book is a mindfully written guide to aid children in dealing with stress and anxiety, by uncovering their emotions and following a simple calming routine.Link

Parenting

When Your Child Has a Chronic Medical Illness Frank J. Sileo PhD (Author), Carol S. Potter MFT  (Author)Parents/Caregivers; Written by leading mental health professionals, this warm and accessible parenting book for children with chronic illnesses offers clear, practical guidance for all aspects of the journey. It is recommended by professionals at the American Diabetes Association, Invisible Disabilities Association, the Crohn's Colitis Foundation, and other expert national and regional sources.Link
Shelter From The Storm: Caring For A Child With A Life-threatening Condition Joanne Hilden (Author), Karen Lindsey  (Author), Daniel R. Tobin (Author)Parents/Caregivers; A compassionate road map to what the family may have to face, what they may be asked to decide, and how they might want to involve their child in the decision-making, Shelter from the Storm will help parents and caregivers make informed, loving, and protective choices on behalf of their children in the most trying of times.Link
When Your Child is Sick: A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who Is Very IllJoanna Breyer, PhD (Author) In When Your Child is Sick, psychosocial counselor Joanna Breyer distills decades of experience working with sick children and their families into a comprehensive guide for navigating the uncharted and frightening terrain. She provides expert advice to guide them through the hospital setting, at-home care, and long-term outcomes.Link
Conquering Your Child's Chronic Pain: A Pediatrician's Guide for Reclaiming a Normal Childhood Lonnie K. Zeltzer M.D. (Author), Christina Blackett Schlank (Author)Based on more than 30 years study, Dr. Zeltzer offers ways to take control of the pain and ultimately become pain-free. She explains how to tell if the pain has become chronic, soothe the nervous system, reactivate the body's natural pain control mechanisms, which medications are most effective, breathing, muscle relaxation and visualization techniques, how to reduce parents' guilt and much more.Link
When Your Child Hurts: Effective Strategies to Increase Comfort, Reduce Stress, and Break the Cycle of Chronic PainRachael Coakley, PhD (Author)This essential guide, written by an expert in pediatric pain management, is the practical, accessible, and comprehensive resource that families and caregivers have been awaiting. It offers in-the-moment strategies for managing a child’s pain along with expert advice for fostering long-term comfort.Link

Sibling Medical Coping

TitleAuthorAudienceLink
When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change (Workbook)Marge HeegaardAges 4-7; An excellent resource for helping children learn the basic concepts of illness and various age-appropriate ways of coping with it.Link
How Do You Care For a Very Sick Bear?Vanessa Bayer and Rosie ButcherAges 3-9; How Do You Care for a Very Sick Bear? is a sweet picture book with advice for children―and adults―for dealing with a sick friend.Link
If I could be You for Just One DayKathy CramerAYA; “Just One Day” is a heartwarming story about the desire to give the gift we cannot give -- to take away pain and illness from those we love. This precious story takes you through a journey from rollercoaster rides to walking in the grass barefoot to smelling flowers and playing in the snow. “Just One Day” is a gift book that the recipient will never forget. Full-color, water illustrations used throughout. Hardcover with dust jacket, 36 pages.Link
Hi, My Name is JackChristina Beall-SullivanAges 3-12; This is a children's book specifically for the healthy siblings of chronically ill, disabled or dying children. This book addresses and focuses upon some of the feelings that may be experienced by healthy siblings. This book is unique in that it is not illness specific and does not focus on the illness itself.Link
What About Me? When Brothers and Sisters Get SickDr. Allan Peterkin MD (Author), Francis Middendorf (Illustrator)Ages 4-8; What about me? This question, usually unspoken, lies at the heart of this poignant story, as a young girl attempts to cope with her brother's being ill. Beautifully written and illustrated, this story deals with the many complicated feelings the well child experiences in such a situation: guilt about having somehow caused the illness, fear that the sibling will die, anger over being left out, anxiety about catching the sickness, and longing for life to return to the way it was.Link
You Weren't with MeChandra Ippen (Author), Erich Ippen (Illustrator)Ages 3-11; Little Rabbit and Big Rabbit are together after a difficult separation, but even though they missed each other, Little Rabbit is not ready to cuddle up and receive Big Rabbit’s love. Little Rabbit needs Big Rabbit to understand what it felt like when they were apart.Link
Extraordinary! A Book for Children with Rare Diseases Evren and Kara Ayik (Author), Ian DaleAges 4-12; Written collaboratively by mother and son, Extraordinary! A Book for Children with Rare Diseases opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease. Link
A Pocket Full of KissesAudrey PennAges 3-7; In this tender sequel to the New York Times bestseller and children's classic The Kissing Hand, Audrey Penn provides parents with another tale of love and reassurance to share with their children. Chester Raccoon has a baby brother—and the baby brother is taking over his territory. When Chester sees his mother give his baby brother a Kissing Hand—his Kissing Hand—he is overcome with sadness, but Mrs. Raccoon soothes his fears with her own special brand of wisdom, finding just the right way to let Chester know he is deeply loved.Link
Right Now I Am Fine Dr. Daniela Owen (Author), Gülce Baycik (Illustrator)Ages 4-10; This book is a mindfully written guide to aid children in dealing with stress and anxiety, by uncovering their emotions and following a simple calming routine.Link
What Do You Do with a Problem?Kobi Yamada  (Author), Mae Besom (Illustrator)Ages 5-8; This is the story of a persistent problem and the child who isn't so sure what to make of it. The longer the problem is avoided, the bigger it seems to get. But when the child finally musters up the courage to face it, the problem turns out to be something quite different than it appeared.Link
There's No Such Thing as a DragonJack KentAges 3-7; When Billy Bixbee finds a tiny dragon in his bedroom, his mom tells him, “There’s no such thing as a dragon!” This only makes the dragon get bigger. He grows, and grows, and grows, until he’s bigger than Billy’s house—and that’s just the beginning! A funny, madcap story and playful illustrations by beloved author-illustrator Jack Kent pair in a book that will have children wondering if maybe friendly pet dragons do exist after all!Link

Special Needs Siblings

TitleAuthorAudienceLink
SometimesRebecca ElliotAges 3-8; Toby loves his big sister Clemmie. She always looks after him and he looks after her - even when her disability means she has to go to hospital again. But they still find ways to have fun together - and their story will help encourage children facing a similar situation.Link
Just BecauseRebecca ElliotAges 3-8; My big sister Clemmie is my best friend. She can't walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra. I don't know why she doesn't do these things. Just because.' This heartwarming picture book about being perfectly loved, no matter what, tells of a brother's love for his sister.Link
Hi, My Name is JackChristina Beall-SullivanAges 3-12; This is a children's book specifically for the healthy siblings of chronically ill, disabled or dying children. This book addresses and focuses upon some of the feelings that may be experienced by healthy siblings. This book is unique in that it is not illness specific and does not focus on the illness itself.Link
The Little Lion That ListenedNicholas Tana  (Author), Jessie Fox (Illustrator), Matthew Molleur (Designer)Ages 3-8; Little Leo is a great listener. His listening skills even save his family from danger. But Leo refuses to roar. His father worries that Leo will never earn the respect of the other animals. Only Leo's mother believes her son will roar when he is ready. Will Leo find his voice when his family needs him most?Link
Evely's Sister: A Project of The Center for Siblings of People with DisabilitiesLuna Diaz (Author), Tameka Diaz (Author), Jessica Leving (Author)Ages 3+; Do you ever feel scared when your sibling has to stay overnight at the hospital? Or feel icky when people stare at your family in public? You're not alone. Read along with 7-year-old Luna as she shares some of the challenges--and the unique joys and triumphs--of having a sibling with physical and intellectual disabilities.Link
My Sibling Story: A Companion Workbook to "Billy's Sister": Proceeds Support The Center for Siblings of People with Disabilities (A Project of The Center for Siblings of People with Disabilities)Jessica Leving  (Author), Wiem Sfar (Illustrator)Ages 3+; Jessica Leving wrote Billy’s Sister: Life when your sibling has a disability based on her real-life experiences growing up with her brother, Billy. Now, you, too, can write and illustrate your own sibling story in this special activity book designed as a companion to the original!Link
Billy's Sister: Life when your sibling has a disability (A Project of The Center for Siblings of People with Disabilities)Jessica Leving (Author), Ian Robertson (Illustrator), Wiem Sfar (Contributor)Ages 3+; Growing up with a sibling who has a disability can be hard. But it can also be... awesome! Based on the author's real-life experiences, this unique and touching children's book explores how siblings of kids with disabilities are special, too. Created with the support of licensed clinical social workers with the aim of helping siblings of kids with disabilities identify, express and process their feelings. This book is intended to be read with a parent or trusted adult and spark family discussions you'll keep coming back to.Link
The Little Lion That Listenedby Nicholas Tana  (Author), Jessie Fox (Illustrator), Matthew Molleur (Designer)Ages 3-8; this unique addition to the New Classics Books collection contains an endearing story about doing things your own way, in your own time.Link

Kids' Anticipatory Grief

TitleAuthorAudienceLink
Beyond the Rainbow (Workbook)Marge HeegaardAges 4-8; An art therapy book which helps children cope with a life-threating illness. Children are encouraged to express in pictures what they are often incapable of expressing in words.Link
The Next PlaceWarren HansonAges 5-9; A classic, "The Next Place" brings gentle verse revealing a safe and welcome destination free from earthly hurts and filled with wonder and peace. A comforting message of hope and a gift of compassion for the bereaved.Link
When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change (Workbook)Marge HeegaardAges 4-7; An excellent resource for helping children learn the basic concepts of illness and various age-appropriate ways of coping with it.Link
The Gift of Gerbert's FeathersMeaghann Weaver MD MPH (Author), Lori Wiener PhD DCSW (Author), Mikki Butterley (Illustrator)Ages 4-8; Gerbert the gosling is strong and brave and has fun times with his family and friends but knows that, one day soon, he won’t be able to keep up with them anymore. As Gerbert prepares for his final migration, he finds a way to show his flock that he will always be with them. Includes a one-page Note to Readers and an online Note with additional information useful for parents, caregivers, grandparents, siblings, and teachers.Link
Ben's Flying FlowersDr. Inger Maier PhD (Author), Maria Bogade (Illustrator)Ages 4-8; When Emily loses her brother after a long illness, she feels alone, angry, and very, very sad. With the understanding and support of her parents, Emily learns that it helps when she snuggles with her parents. It helps when she talks about her feelings and asks questions about Ben. And it helps when she does regular kid stuff, too.Link
The Invisible StringPatrice Karst, Joanne Lew-VriethoffAges 4-8; about the unbreakable connections between loved ones has healed a generation of readers--children and adults alike--and has been updated with new illustrations and an afterword from the author.Link
The Big Tree is SickNathalie Slosse (Author), Rocio Del Moral (Illustrator), Emmi Smid (Translator)Ages 3-7; This beautifully illustrated storybook describes the anger and emotion that many children encounter when a close relative or friend is diagnosed with a long-term illness, such as cancer. The story of Big Tree depicts how things are often out of your control and sets out effective strategies for dealing with these emotions.Link

Adolescent & Young Adult Grief

TitleAuthorAudienceLink
Fire In My Heart Ice In My Veins: A journal for young adults and teenagers (Journal)Enid Samuel-TraismanAges 13+; A safe place for young adults and teens to write down letters, meaningful lyrics, songs, poems, things that they want the person who passed away to know.Link
Healing Adult Sibling's Grieving HeartAlan WolfeltAdult Siblings; Compassionate and heartfelt, this collection offers 100 practical ideas to help understand and accept the passing of a sibling in order to practice self-healing. The principles of grief and mourning are clearly defined, accompanied by action-oriented tips for embracing bereavement. Whether a sibling has died as a young or older adult or the death was sudden or anticipated, this resource provides a healthy approach to dealing with the aftermath.Link
Healing Grieving Heart for Teens: 100 Practical IdeasAlan WolfeltAges 12-18; Acknowledging that death is a painful, ongoing part of life, they explain how people need to slow down, turn inward, embrace their feelings of loss, and seek and accept support when a loved one dies.Link
Stuff That Sucks (Journal)Ben SedleyAges 12+; A teen’s guide to accepting what you can’t change and committing to what you can. A compassionate and validating guide committed to helping teens prioritizing their thoughts and emotions. Based on the acceptance and commitment therapy (ACT). Not isolated to grief over loss.Link
Grieving the Sibling You Lost: A Teen's Guide to Coping with Grief and Finding Meaning After Loss (Workbook)Goldblatt Hyatt DSWAgs 12+; For the first time, a psychotherapist specializing in teen and adolescent bereavement offers a compassionate guide to help you discover your unique coping style, deal with overwhelming emotions, and find constructive ways to manage this profound loss so you can move forward in a meaningful and healthy way.Link
Why Did You Die? (Workbook)Erika LeeuwenburghAges 6-12; When a loved one dies, children are faced with a kaleidoscope of feelings, thoughts, myths, and questions. This workbook offers tools that you can use to help a grieving child in your life deal with these feelings.Link
The Healing Your Grieving Heart Journal for TeensAlan D Wolfelt PhD (Author)AYA; In light of how difficult it is just to survive the teenage years, the grieving process can be especially difficult and overwhelming for teenagers. This diary affirms the grieving teen's journey and offers gentle, healing guidance. In order to sort through their confusing feelings and thoughts, teens are prompted to explore simple, open-ended questions. Teens are encouraged to write what they miss about the person who died, the specific feelings that have been most difficult since the death, or the things they wish they had said to the person before they died.Link
Como curar un corazón roto: Ideas para sanar la aflicción y la pérdida (How to Heal a Broken Heart: Ideas for Healing Grief and Loss)Gaby Perez IslasAges 12+; Todos los días nos enfrentamos a diferentes tipos de pérdidas: desde cosas a las que tenemos gran apego, hasta divorcios, la muerte de un ser querido, un cambio de domicilio, la pérdida de un empleo, de una mascota o de la salud, adicciones, trastornos de la alimentación, secuestros, suicidios y sueños no alcanzados.Link

Kids' Grief

TitleAuthorAudienceLink
We Were Gonna Have a Baby But Had an Angel InsteadPat Schwiebert and Taylor BillsAges 2-5; Created especially for children who are suffering the loss of their families pregnancy.Link
No New BabyMarilyn GryteAges 4-8; For siblings who have a brother or sister die before birth. This storybook talks about the different feelings children have and answers some of the most asked questions. Recently revised, includes a section for parents and grandparents. Illustrations are done by Kristi McClendon.Link
Lifetimes: The Beautiful Way to Explain Death to ChildrenB. Mellonie & R.R. IngpenAges 3-7; Gentle explanations of the life cycle.Link
Death is StupidAnastasia HigginbothamAges 4-8; This forthright exploration of grief and mourning recognizes the anger, confusion, and fear that we feel about death. Necessary, beautiful, and ultimately reassuring, Death Is Stupid is an invaluable tool for discussing death, but also the possibilities for celebrating life and love.Link
When Someone Very Special Dies: Children Can Learn to Cope with Grief (Workbook)Marge HeegaardAges 5-10; Workbook format dealing with lifecycle, grief reactions, memories and coping strategies. Children, with the supervision of an adult, are invited to illustrate and personalize their loss through art. When Someone Very Special Dies encourages the child to identify support systems and personal strengths.Link
Something Happened: : A Book for Children and Parents Who Have Experienced Pregnancy LossCathy BlanfordAges 4-8; The book addresses the sadness that a child experiences when the anticipated baby has died. The child's fears and feelings of guilt are addressed as well as other confusing feelings. Perhaps most important, the book includes the family's experience of going on with life while always remembering their baby.Link
I Miss You: A First Look at DeathPat ThomasAges 4-8; This book helps boys and girls understand that death is a natural complement to life, and that grief and a sense of loss are normal feelings for them to have following a loved one's death.Link
The Memory BoxJoanna Rowland (Author), Thea Baker (Illustrator)Ages 4-8; From the perspective of a young child, Joanna Rowland artfully describes what it is like to remember and grieve a loved one who has died. The child in the story creates a memory box to keep mementos and written memories of the loved one, to help in the grieving process. Heartfelt and comforting, The Memory Box will help children and adults talk about this very difficult topic together.Link
Ida AlwaysCaron LevisAges 4-8; This book helps boys and girls understand that death is a natural complement to life, and that grief and a sense of loss are normal feelings for them to have following a loved one's death.Link
The Invisible StringPatrice Karst, Joanne Lew-VriethoffAges 4-8; about the unbreakable connections between loved ones has healed a generation of readers--children and adults alike--and has been updated with new illustrations and an afterword from the author.Link
Guiding Your Child Through GriefM.A. & J.P. EmswillerParents/Caregivers; For parents/caregivers supporting a child after the death of another parent or sibling Written by a husband and wife team, Guiding your child through grief offers expert advice on helping children cope with the death of a parent or sibling.Link
Healing Your Grieving Heart for Kids: 100 Practical IdeasAlan WolfeltAges 3-11; With sensitivity and insight, this series offers suggestions for healing activities that can help survivors learn to express their grief and mourn naturallyLink
What On Earth Do You Do When Someone Dies?Trevor Romain BookAges 5-10; Simple, insightful, and straight from the heart—is for any child who has lost a loved one or other special person. Trevor talks directly to kids about what death means and how to cope. He asks the kinds of questions kids have about death—Why? How? What next? Is it my fault? What’s a funeral?—in basic, straightforward terms. He describes and discusses the overwhelming emotions involved in grieving—sadness, fear, anger, guilt—and offers practical strategies for dealing with them.Link
When Something Terrible Happens: Children Can Learn to Cope with Grief (Workbook)Marge HeegaardAges 4-8; Creates ways for children to explore the fright, confusion, and insecurity caused by traumatic events in their lives.Link
Where Are You? A Child's Book About LossLaura OlivieriAges 4-8; Where Are You: A Child's Book About Loss is a kind and supportive text with beautiful illustrations designed to help children of all ages cope with the loss of a loved one. It is created with love and care so that even the youngest readers will find comfort during this stressful and difficult time.Link
Tear SoupPat Schweibert, Chuck DeKlyen, Talyor Bills, Mary McDonald-LewisAges 8-12; If you are going to buy only one book on grief, this is the one to get! It will validate your grief experience, and you can share it with your children. You can leave it on the coffee table so others will pick it up, read it, and then better appreciate your grieving time. Grand's Cooking Tips section at the back of the book is rich with wisdom and concrete recommendations. Better than a casserole!Link
Something Very Sad HappenedBonnie ZuckerAges 2-3; Something Very Sad Happened is intended to be read to two- and three-year-old children to help them understand death and process the loss of a loved one. Written at a developmental level that is appropriate for two- and three-year-olds, the story explains death; lets children know that it is okay to feel sad; and reassures children that they can still love the person who died, and the person who died will always love them.Link
Why Did You Die? (Workbook)Erika LeeuwenburghAges 6-12; When a loved one dies, children are faced with a kaleidoscope of feelings, thoughts, myths, and questions. This workbook offers tools that you can use to help a grieving child in your life deal with these feelings.Link
The Memory Book: A Grief Journal for Children and FamiliesJoanna Rowland  (Author), Thea Baker (Illustrator)Ages 4-8; Joanna Rowland's bestselling The Memory Box: A Book about Grief has helped thousands of children and families work through complex emotions that arise after the death of a loved one. The Memory Book is a beautiful, interactive grief journal that helps readers document their memories and process their emotions.Link
Out Came the Sun: Helping Children as They GrieveChildren's Bereavement Center of South TexasParents/Caregivers/Teachers; The exercises and strategies in this book are rooted in research, fun to learn, and easy to practice. And the best part? You can carry them with you wherever you go. Take them out into the world and take charge of your pain—and your life!Link
The Memory Book: A Grief Journal for Children and FamiliesJoanna Rowland  (Author), Thea Baker (Illustrator)Ages 4-8; Used alone or as a group, this special keepsake supports grieving children as they process their emotions by remembering a loved one. With journaling space, pages for photos, and questions to help prompt drawing and reminiscing, each page is designed to allow personalization at your own pace. Just like grief isn’t something one gets over in a day, the journal is designed to be used over time while it becomes an honoring memorial of any loved one who has died.Link
Our Story: A Memory Book For (Kid Talk Grief)Mel EricksonAges 0-12; OUR STORY: A MEMORY BOOK for _____ is 38 pages of exercises designed to enable children to navigate their grief, tell their story, and better understand and express their grief. It is an interactive tool you can use to help a child learn, heal, and grow through their grieving process, while bonding with you, the helper.Link
Good Mourning; : A Kid's Support Guide for Grief and Mourning DeathSeldon Peden IIAges 5-12; The Good Mourning is a kid's support guide for grief and mourning death. The book helps other boys and girls deal with the loss of a parent, grandparent, other close relative, or friend. The Good Mourning is an easily read book that helps children process, from a peer's perspective, the broad range of emotions, thoughts, and pain experienced after the loss of a loved one.Link

Pregnancy & Infant Illness

TitleAuthorAudienceLinkReading Video
Empty Cradle Broken Heart: Surviving the Death of Your BabyDeborah DavisParents coping with miscarriage, stillbirth, infant death. The heartache of miscarriage, stillbirth, or infant death affects thousands of U.S. families every year. Empty Cradle, Broken Heart, Third Edition offers reassurance to parents who struggle with anger, guilt, and despair during and after such a tragedy.Link
Greiving the Child I Never KnewKathe WunnenbergParents; Grieving the Child I Never Knew is a warm, encouraging, and truly helpful devotional for anyone experiencing the terrible loss of a baby.Link
Loved Baby: 31 Devotions Helping You Grieve and Cherish Your Child after Pregnancy Loss – A Devotional Book on How to Cope, Mourn and Heal after Losing a BabySarah PhilpottMothers; Loved Baby offers much-needed support to women in the middle of psychological and physiological grief as a result of losing an unborn child through miscarriage, stillbirth, or ectopic pregnancy loss.Link
Gift of Time: Continuing Your Pregnancy When Your Baby's Life Is Expected to Be BriefAmy Kuebelbeck, Deborah L. DavisParents; A Gift of Time is a gentle and practical guide for parents who decide to continue their pregnancy knowing that their baby's life will be brief.Link
I Love You Still: A Memorial Baby Book (Baby Book)Margaret ScofieldParents; I Love You Still: A Memorial Baby Book was carefully created to hold memories and love for babies taken too soon due to miscarriage, stillbirth, or in their first days of life.Link
Walking with You for GrandparentsKelly GerkenGrandparents were planning, waiting, and dreaming for this precious baby right along with the child’s parents. They are not only part of the story, but they have their own stories to tell. Stories of much wanted and longed for babies. Stories filled with plans and dreams that were changedforever with the words, “I’m so sorry...there is no heartbeat.” Their stories are worth telling. Because our babies lived. Our babies matter.Link
We Were Gonna Have a Baby But Had an Angel InsteadPat Schwiebert and Taylor BillsAges 2-5; Created especially for children who are suffering the loss of their families pregnancy.LinkLink
No New BabyMarilyn GryteAges 2-5; For siblings who have a brother or sister die before birth. This storybook talks about the different feelings children have and answers some of the most asked questions. Recently revised, includes a section for parents and grandparents. Illustrations are done by Kristi McClendon.Link
Healing Your Greiving Heart after Miscarriage  Alan Wolfelt, PhDParents; This compassionate guide contains 100 practical ideas to help those affected by the tragedy of miscarriage, from teaching the principles of grief and mourning to practical, action-oriented tips for coping with the natural difficulties of a loss. Fostering communication between partners, explaining the loss to others, and reconciling anger and guilt are some of the additional topics covered in this compassionate book for those grieving in the aftermath of a miscarriage or ectopic pregnancy.Link
Healing Your Grieving Heart After Stillbirth: 100 Practical Ideas for Parents and FamiliesAlan Wolfelt, PhDParents; Beloved grief educator Dr. Alan Wolfelt compassionately explores the common feelings of shock, anger, guilt, and sadness that accompany a stillborn child, offering suggestions for expressing feelings, remembering the child, and healing as a family. Ideas to help each unique person—mother, father, grandparent, sibling, friend—are included, as are thoughts from families who experienced a stillbirth. Link
Waiting with Gabriel: A Story of Cherishing a Baby's Brief LifeAmy Kuebelbeck Parents/Caregivers; This memoir is the true story of parents who were told that their unborn baby had an incurable heart condition, confronting them with an impossible decision: to attempt risky surgeries to give their baby a chance at a longer life, or to continue the pregnancy and embrace their baby's life as it would unfold, from conception to natural death. Link
Our New Baby Needs Special Help: A Coloring Book for Families Whose New Baby has ProblemsGail J. Klayman, M.Ed. C.C.L.SFor small siblings whose new baby may or may not come home. Starts when the child is excited about having the new baby, parents finding out there is a serious problem, and visiting the NICU. Perfect for child-life specialists! “Jane patted my shoulder. “We don’t know why some babies are born with problems. We do know it’s not because of anything we thought or felt.”    Link
At a Loss: Finding Your Way After Miscarriage, Stillbirth, or Infant DeathDonna RothertParents/Caregivers; Written by a psychologist who experienced two pregnancy losses herself, At a Loss offers thirty essays on the thoughts, feelings, and struggles that come along with losing a pregnancy or baby. Whether you are early in a crisis of grief or exploring the loss years afterward, you will find self-compassion, healing, and new ways to make meaning of your loss.Link
Difficult Decisions: For Families Whose Unborn Baby Has a Serious ProblemPatricia Fertel & Joy JohnsonParents/Caregivers; These decisions take great strength. With gentle support, we deal with loss, hopelessness, relating to others and community resources. Link
This Little While: For Parents Experiencing the Death of a Stillborn Baby or Very Young InfantJoy and Dr. S.M. JohnsonParents/Caregivers; (English and Spanish) Centering's number one selling book for infant loss. Full of information beginning with hearing the bad news, recognizing the reality, things to do before you leave the hospital, naming your baby, grieving the loss, healing together. Ends with sample birth/death announcements, support organizations.Link

Parent & Caregiver Grief

TitleAuthorAudienceLink
Journey Through Grief and loss: Helping Yourself and Your Child When Grief Is SharedRobert ZuckerParents/Caregivers; Understanding grief for adults and children. How to communicate with children about death. Understanding how adults and children grieve differently • Learning how to explain the meaning of death to children • Knowing what to do when grief gets complicated • Deciding when they and/or their child need counseling • Helping their family members stay connected with loved ones even after deathLink
Healing a Parent's Grieving Heart; : 100 Practical Ideas After Your Child DiesAlan D. Wolfelt, PhDBereaved Parents; Tips for coping and healing with loss of a child. Presenting simple yet highly effective methods for coping and healing, this book provides answers and relief to parents trying to deal with the loss of a child. It offers 100 practical, action-oriented tips for embracing griefLink
Grief Day by Day: Simple Practices and Daily Guidance for Living with LossJan WarnerGeneral Grief; Adults; 365 Daily Reflections that include quotes, meditations, and other musings on grief. Weekly Themes that capture common feelings and experiences such as: Loneliness, Things Left Unsaid, Unhealthy Coping Mechanisms, Guilt, and Intimacy. 52 Healing Exercises that help you process your feelings at the end of each week and develop skills for coping with grief as it arisesLink
Healing a Grandparent's Grieving Heart: 100 Practical Ideas After Your Grandchild DiesAlan D. Wolfelt, PhDBereaved Grandparents; practical coping ideas. This heartfelt manual is an indispensable and easily referenced resource for grieving grandparents, offering them a way forward after the death of a grandchild. Whether they were close to their grandchild and keenly feeling his or her absence, or even if they were not close to the child and are mourning the loss of a relationship they’ll never haveLink
Walking with You for GrandparentsKelly GerkenGrandparents were planning, waiting, and dreaming for this precious baby right along with the child’s parents. They are not only part of the story, but they have their own stories to tell. Stories of much wanted and longed for babies. Stories filled with plans and dreams that were changedforever with the words, “I’m so sorry...there is no heartbeat.” Their stories are worth telling. Because our babies lived. Our babies matter.Link
Beyond Tears: Living After Losing a Child, Revised EditionEllen Mitchell and Rita VolpeParents; Book For parents who have lost a child. A cathartic book that provides comfort and direction to parents who have lost a child. Follows 9 mothers and how they coped with their loss. Includes the perspective of surviving siblings.Link
From Despair to Hope: Survival Guide for Bereaved ParentsLinda ZelickParents; This is a must have book for every newly bereaved parent. Written by a mother who lost a son, the book offers help, hope and guidance to those facing the crippling emotions that come with the loss of a child of any age. The author combines suggestions gained from personal experience as well as advice from other parents and experts in their fields.Link
The Grieving Child: A Parent's GuideHelen FitzgeraldParents & Caregivers; Explaining death to a child is one of the most difficult tasks a parent or other relative can face. The Grieving Child offers practical, compassionate advice for helping a child cope with the death of a parent or other loved one. Parents of children from preschool age to the teen years will find much-needed guidanceLink
Shattered: Surviving the Loss of a ChildGary RoeParents; In Shattered, Roe walks the reader through the powerful impact a child’s death can have - emotionally, mentally, physically, relationally, and spiritually.Link
For Bereaved GrandparentsAuthor: Margaret H. GernerBereaved Grandparents; Grief is the normal reaction to a loss.  Actually, we experience grief throughout our lives.  A pet dies.  A friend moves away.  Our children go off to college.  We lose a job.  We grieve these losses, but we don’t always realize that’s what we are doing.  With a grandchild’s death, we face one of life’s most painful griefs.Link
For Better or For WorseAuthor: Maribeth Wilder DoerrBereaved Parents/Caregivers; Grief is a long, hard road.  The author hopes that in reading this book you will find the strength to assign your marriage the highest priority and become closer in the process.Link
Fathers Grieve, Too: For Fathers Who Have Experienced the Death of a ChildIllustrations: Glenda DietrichBereaved Fathers; A small handout that is easy for newly bereaved fathers to read.Link
Single Parent GriefAuthor: Sherokee IlseBereaved Single Parents; This booklet addresses the issue of facing the loss as a single parent, feeling lonely, guilt and shame, envy and jealousy, pressure from others, relationship issues, other issues that may be affecting you, dealing with your grief, building support, coping skills, and dating again.Link
A Grandparent's SorrowAuthor: Pat Schwiebert Bereaved Grandparents; An excellent resource for bereaved grandparents including information about how to help your child, what not to say and what to say instead, gifts to give, taking care of yourself, multiple loss, friends, faith and talking with your grandchildren, and touching poetry throughout.Link
Grief Journey: Notes on Grief for Teens, Young Adults and Anyone Who Is GrievingAuthor: Mark T. Scrivani, M.A.Grieving AYAs and Adults; Talks about the “Firsts” of grief, changes and feeling helpless, then goes into the pain of grief, coping, holidays, hope, saying goodbye, and how our love lives on. Reader-friendly and packed with information.Link
Children Die, TooJoy and Marv JohnsonParents; (Available in English and Spanish) Living after the death of a child is not done according to a fixed pattern of emotions. The various feelings and experiences are more like changes in the weather. About the time you believe the storm has passed, you find it returning to stir you again. Some parents have described their grief as coming in waves. Just when you least expect it, you are struck by the wave and carried along with it. Grief is something you integrate into your life. You don’t “get through it” or “get over it.” You make it a part of you, just as your child will always be a part of you and never forgotten.Link

Coping with Sickle Cell

TitleAuthorAudienceLink
My Friend Jen: A Little DifferentJenica Leah3+ Years; “There is nothing that my friend Jen can’t do, but on the inside, she’s a little different to me and you.” As Jens friend tells us a story, you will learn a few simple tips on how to stay well with Sickle Cell. A Little Different is the first in the series of My Friend Jen books. The series of children's books aims to create better understanding and awareness of the blood disorder Sickle Cell Anaemia in a fun and informative way.
My Friend Jen: The Checkup Jenica Leah3+ Years; The fun and informative children's book series about sickle cell continues. In this sequel, we learn all the different things Jen has to do when she goes for a check up at the hospital.Link

Advanced Directives

TitleAuthorAudienceLink
Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures, and the Patient with a Serious Illness, 6th Ed.Hank DunnCaregivers; Hank Dunn draws on his extensive experience as a chaplain in a nursing home, hospice program and hospital.Link
My WishesFive WishesChildren; My Wishes is a booklet written in everyday language that helps children express how they want to be cared for in case they become seriously ill. My Wishes also helps begin conversations among children, parents and caregivers, just like Five Wishes. My Wishes is not a legal document.Link
Voicing My ChoicesFive WishesAYA; Voicing My Choices empowers young people living with a serious illness to communicate to family, friends and caregivers how you want to be comforted, supported, treated and remembered.Link

Journals

TitleLink
Be Still & Know That I am God/religious JournalLink
Start Where You Are JournalLink
Individual Journals

Online Resources

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Caregivers Support

OrganizationAboutWebsite LinkSocial Media
Courageous Parents NetworkCPN is a destination created by parents, for parents, to support, guide and strengthen families as they care for a seriously ill child. Here you will find wisdom from fellow parents and pediatric care providers to help you be the best parent you can be to your child and children—and get through each momentLinkLink
Joe Bear FoundationIncludes educational resources and support are offered to their family to give information they need during the challenging time of caring for their sick child.LinkLink

Grief Centers

OrganizationAboutLinkSocial Media
The Compassionate Friends: Supporting Family After a Child DiesThe Compassionate Friends provides highly personal comfort, hope, and support to every family experiencing the death of a son or a daughter, a brother or a sister, or a grandchild, and helps others better assist the grieving family.LinkLink
What’s Your Grief?Offers several supportive resources for families experiencing grief.LinkLink
The Dougy CenterOffers supportive resources for children, teens, young adults, and their families grieving a death can share their experiences. They provide support and training locally, nationally, and internationally to individuals and organizations seeking to assist children in grief. Currently providing resources on coping during COVID-19.LinkLink
National Alliance for Grieving ChildrenNAGC is a nonprofit organization that raises awareness about the needs of children and teens who are grieving a death and provides education and resources for anyone who supports them.LinkLink
Digging DeepWe began our journey with the journaling book: Digging Deep: A Journal for Young People Facing Health Challenges by Rose Offner, MFA and Sheri Brisson, MA (Resonance House, 2014).LinkLink
Still Standing MagazineThis is a page for all grieving parents. If you grieve the loss of your child, no matter the circumstances, you are welcome here.LinkLink
Good GriefGood Grief builds resilience in children, strengthens families, and empowers communities to grow from loss and adversity.LinkLink

Perinatal & Neonatal

OrganizationAboutWebsite LinkSocial Media
Central New York Perinatal and Infant Bereavement ResourcesThis is a safe place for families who have experienced pregnancy or infant loss to get resources. Please be sensitive to others feelings of grief. We are all here to support each other.LinkLink
Perinatal Hospice and Palliative CarePerinatalHospice.org is a clearinghouse of information about perinatal hospice & palliative care, including many resources for parents and caregivers as well as an international list of more than 300 programs.LinkLink
Support Organization for TrisomySOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. Support can be provided during parental diagnosis, the child's life and after the child's passing. SOFT is committed to respect a family's personal decision and to the notion of parent-professional relationships.LinkLink
Pregnancy and Infant Loss Awareness MonthLeading the Campaign for observation of International Pregnancy and Infant Loss Awareness MonthLinkLink
Pregnancy and Infant Loss SupportWe are here to support each other with greiving the loss of our precious angels. Dont hold anything back or keep anything bottled in. we are here to support parents, sibling, grandparents and all that have lost.LinkLink
Still Standing MagazineThis is a page for all grieving parents. If you grieve the loss of your child, no matter the circumstances, you are welcome here.LinkLink

Family Bereavement Activities

NameAboutLink
Youth LightActivities for Grieving Children Memory-Making ActivitiesLink
Shadow’s Edge GameShadow’s Edge is inspired by the journaling book, Digging Deep: A Journal for Young People Facing Health Challenges, by Rose Offner, MFA, and Sheri Brisson, MA. Find more about the Digging Deep Project as well as resources for parents and professionals working to help young people find resilience at diggingdeep.orgLinkLink
Virtual HospiceThe Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators.Virtualhospice.ca
Children’s Bereavement Center of South TexasGrieving is a unique journey for everyone and every loss is different. Here, we have compiled different grief resources based on our team’s research. It is our goal that these resources serve as a guide for you and your family in your grief journey.Link
Resolve Through SharingResolve Through Sharing offers grief support materials and industry-leading comprehensive perinatal, neonatal, pediatric, and adult death bereavement training to healthcare professionals globally.Link
National Child Traumatic Stress NetworkMission is to raise the standard of care and improve access to services for traumatized children, their families and communities. Includes updated resources on racial injustice, and trauma related to COVID-19.Link
Centering CorporationCentering is a non-profit organization dedicated to providing education and resources for the bereaved of all ages.Link
International Children’s Palliative Care Network (ICPN)The ICPCN‘s mission is to achieve the best quality of life and care for children and young people with life-limiting conditions, their families and carers worldwide, by raising awareness of children’s palliative care, lobbying for the global development of children’s palliative care services, and sharing expertise, skills and knowledgeLink
Hamilton Funeral HomePrintable Grief and Loss ResourcesLink
Grief GamesDigital Grief GamesLink
Children and Youth Grief NetworkMission is to advocate for educational opportunities and support services that will benefit children and youth who are grieving the dying or the death of someone they care about.Link
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