Please use these additional resources, tools and guides to assist and offer insight as you and your family proceed on your palliative care journey.
Chronic Needs Support:
Parent and patient blog site that connects friends and family during a health challenge.
Courageous Parents Network
Website for families with children with serious illnesses. Testimonial videos, a blog, and parent and provider resources.
Grants and Resources for Families with Special Needs
A list of grants and resources for families of children with medical or special needs.
Health Care Library
A helpful online library full or medical information.
Helping From Heaven Supplies, equipment, help and support for families with special needs.
Home Health Care:
A handout of questions to think of asking when working with a home health company, especially for the first time.
Iowa resource for information about disability-related programs and services
Ollie Webb Center
The Arc of Omaha – a center for children with disabilities in Omaha.
Partnership for Parents
A support network for parents of children with special needs.
Pediatric Starter Kit:
Help for having the conversation about end of life with your seriously ill child.
Nebraska resource for families of children with disabilities or special health care needs, enabling parents to have the capacity to improve the education and healthcare outcomes for their children.
The first-ever online social network for teens with chronic and life-threatening medical conditions, and their siblings. Members are able to connect globally with others experiencing similar medical journeys. Powered by Starlight Children’s Foundation, all content in Starbright World is moderated by trained adults at all times.
Full resource about all things tracheostomy including definitions, home cares, pros and cons, and support.
Information and Support Centers:
Ted E Bear Hollow
A center for grieving children and teens.
A nonprofit grief support center located in Omaha that offers resources for purchase to help aid families.
A center for grieving families: focusing on support for children through young adults. Also addresses needs for siblings of a chronically ill child.
A place for families coping with serious illness or death of a child can make memories while finding hope and strength for the future.
Dougy Resource Center
A site filled with information, including books, dvds, or support groups for children and families outlined by state
National Alliance for Grieving Children
A national center for grieving children and families. Find support in your area and resources to help the whole family.
An organization supports families after a child dies.Local chapters of support as well as online groups and lots of additional resources.
Enable Savings Plan - Facts About ABLE
Enable Savings Information (PDF)
Articles and Newsletters:
What I Would Tell You by Julie Keon
Insiders Guide to Respite Care
A Time to Decide, a Time to Heal by Molly Minnick
For parents who are faced with making difficult decisions about their infants
Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life Threatening Illness by Hank Dunn
Loving and Letting Go by Deborah Davis
For parents who decide to turn away from aggressive medical interventions
A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to Be Brief by Amy Kuebelbeck
Discusses options, decisions, support, and other topics associated with prenatal and perinatal diagnosis
Discussing Illness and Death with Children
Lean On Me Gently: Helping the Grieving Child by Doug Manning
Discusses ways to help children who are grieving
Never Too Young to Know: Death in Children’s Lives by Phyllis Rolfe Silverman.
A nice explanation on how children cope with death and grief
Shadows in the Sun: The Experiences of Sibling Bereavement in Childhood by Betty Davies
Discusses the immediate, short-term, and long-term bereavement of siblings after a child dies.
A Terrible Thing Happened: A Story for Children who Have Witnessed Violence or Trauma by Margaret M. Holmes.
A boy explains how an awful event triggers a physical and emotional response (Useful in several contexts because the boy never tells what the event is).
Gentle Willow: A Story for Children about Dying by Joyce Mills
A girl explores ways to positively remember her friend and how to say goodbye.
I Miss You: A First Look at Death by Pat Thomas
Guide to understand death and the normal stages of grief.
I Know I Made It Happen: Children and Guilt by Lynn Blackburn.
Guilt and fault in dealing with an illness and learning to realize no one is to blame.
Lifetimes: A Beautiful Way to Explain Death to Children by Bryan Mellonie & Robert Ingpen.
Death Explained in Children’s Language
Someone Special Died by Joan Singleton Prestine.
A girl’s account of how she felt with the death of a loved one and how she learned to honor them in her own way.
Sunflowers and Rainbows for Tia: Saying Goodbye to Daddy by Alesia Greene.
A young girl learns to cope with the death of her father.
The Giving Tree by Shel Silverstein.
A book with many interpretations
Waterbugs and Dragonflies: Explaining death to young children by Doris Stickney.
A simple parable of death and beyond
The Next Place by Warren Hanson
Journey to the place beyond here and now
Tough Boris by Mem Fox
A young boy discovers that even the toughest pirates cry sometimes.
When Dinosaurs Die: A Guide to Understanding Death by Laurie Kransy Brown
Answers basic questions about death.
When the Wind Blows by Charlotte Zolotow
A look at how nature doesn’t end, just begins something new.
A Different Dream for My Child by Jolene Philo
Discussions of a family facing a life threatening birth defect of their son
Notes Left Behind by Brooke and Keith Desserich
As a remembrance for their daughter the authors chronicle their journey through a life threatening illness and death
Waiting With Gabriel: A story of cherishing a baby’s brief life by Amy Kuebelbeck
A journey with a family as they prepare to welcome and say goodbye to their son who was perfect except for his heart
Bloom by Kelle Hampton
A personal account of dealing with the pain of diagnosis and learning to find joy and hope on new path
Grandparents Cry Twice: Help for Bereaved Grandparents by Mary Lou Reed
Beyond the Rainbow by Marge Eaton Heegard
A book to help a child with a serious illness cope
Little Tree: A Story for Children with Serious Medical Problems by Joyce C. Mills
Improves understanding of stages of illness, changes, and that inside the illness does not change who they really are
Living Well with My Serious Illness by Marge Eaton Heegaard
An activity book that helps explain a child’s serious illness
Beyond the Rainbow by Marge Eaton Heegaard
A workbook for children in the advanced stages of a very serious illness
That Summer by Tony Johnston
A dying child and his family sew a quilt of memories
For Siblings, Family, and Friends
A Birthday Present for Daniel: A child’s Story of Loss by Juliet Rothman.
A girls tells how her family helped her cope with the death of her brother
If Nathan Were Here by Mary Bahr
A boy learns to cope with the loss of a friend
Lost and Found: Remembering a Sister by Ellen Yeomans
A girl’s account of her thoughts and feelings when her sister dies
Stacy Had a Little Sister by Wendie Old
A girl loses her baby sister to SIDS.
The Empty Place: A child’s Guide through Grief (Let’s Talk) by Roberta Temes
A boy opens up to a caregiver about the loss of his sister
A Grief Unveiled: One Father’s Journey through the Death of a Child by Gregory Floyd
A Grief Unveiled: One Father’s Journey through the Death of a Child, Fifteen Years Later by Gregory Floyd
Empty Cradle, Broken Heart: Surviving the Death of Your Baby by Deborah Davis.
Focuses on the heartache associated with miscarriages, stillbirths, and infant deaths
Gone from My Sight: The Dying Experience by Barbara Karnes