Resources

• Living with Chronic and Life Altering Illnesses
• High Risk Pregnancy and Loss
• Bereavement Support

Helpful Sites

• HealthyChildren: Living with a Chronic Illness or Disability
• Needymeds: Financial Resources and Support
• Kidshealth: Balancing Academics and Serious Illness
• Mended Hearts for Cardiac Families
• SuperSibs

Local Groups and Organizations

• CompassionNet
• UR Medicine Homecare
• Caring Bridge
• Make a Wish
• CURE Childhood Cancer
• Camp Good Days
• 13-30 Cancer Connect

Books

Kids

• The Hospital Hoppities (Charlotte Hartley-Jones)
• The Perfect Shelter (Clare Helen Walsh)
• When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change – Interactive Journal for 6-12 year olds – also available in Spanish (Marge Heegaard)

Adults

• Shelter from the Storm: Caring for a Child with a Life-Threatening Condition (Joanne Hilden & Karen Lindsey)
• Armfuls of Time (Barbara Sourkes)

 

Helpful Sites

• SHARE
• Perinatal Hospice & Palliative Care
• Now I Lay Me Down to Sleep
• Kids Health for Preemies
• SOFT (Trisomy Support)
• Star Legacy Foundation

Local Groups and Organizations

• SAIL: (Strong Arms in Infant Loss)  Contact Liz Conrow at (585) 275-8304 or by email at Elizabeth_Conrow@urmc.rochester.edu for meeting information.
• Forget Me Not: Contact: Kim Doolittle at (585) 454-9299, or by email at  forgetmenotrochester@gmail.com

Books

Kids

• No Bigger Than My Teddy Bear (Valerie Panknow)

Adults

• A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to be Brief (Amy Kuebelbeck)
• Preemies - Second Edition: The Essential Guide for Parents of Premature Babies (Dana Wechsler Linden)
• Waiting for Gabriel: A Story of Cherishing a Baby’s Brief Life (Amy Kuebelbeck)
• Empty Cradle, Broken Heart: Surviving the Death of Your Baby (Deborah Davis)

Helpful Sites

• Golosano Children's Hospital Hospital Bereavement Website
• Guide to Grieving Support Resources
• What’s Your Grief
• A Bed for My Heart: Dear Newly Bereaved Parent

Local Groups and Organizations

• Compassionate Friends
• Mended Hearts Angels
• Rise Up Rochester
• Dreams from Drake

Books

Kids

• The Invisible String & The Invisible String Workbook (Patricia Karst)
• I miss you: A First Look at Death (Pat Thomas)
• I will always Love You: A Journey from Grief and Loss to Hope and Love (Melissa Lyons)
• The Goodbye Book (Todd Parr)
• The Memory Box: A Book About Grief (Joanna Rowland)
• Tear Soup: A Recipe for Healing After Loss (Pat Schwiebert)
• Lifetimes: A Beautiful Way to Explain Death to Children (Bryan Mellonie)
• Grieving for the Sibling You Lost: A Teens Guide to Coping With Grief and Finding Meaning After Loss (Erica Goldblatt Hyatt)
• Fire in My Heart, Ice in My Veins: A Journal for Teenagers Experiencing Loss (Enid Samuel Traisman)

Adults

• Healing a Parent’s Grieving Heart: 100 Practical Ideas After Your Child Dies (Alan Wolfelt)
• It’s Ok that You’re Not OK (Megan Devine)
• Permission to Mourn (Tom Zuba)