You can choose to drown in the wave of grief, or become a better surfer.
A Mother
The Bereavement Experience Journal is a collection of stories and personal experiences exploring some of the thoughts, feelings, and challenges parents, siblings, and providers face when a child dies.
Some stories and experiences describe very personal losses. It is normal to feel some emotional discomfort when reading the stories of families in this journal. However, we hope that families may learn from the stories of others facing similar experiences.
Visit the Glossary to read definitions for words in bold. Visit our Resources page to learn more about parent and clinician recommended websites on grieving for a child.
EJ Editor’s Note: These stories contain emotionally powerful material; pacing yourself may be helpful.
Video Interviews:
- Cameron Arc: Creating A Full Life. A video produced by the Lord Family in collaboration with their child’s medical team and the American Academy of Pediatrics. They discuss their experiences as a family and their physicians share their perspectives as well.
- “What Do I Tell My Children?” A video made by clinicians about how to talk to siblings about the loss of a child.
The following interviews feature parents, siblings, and clinicians speaking about the bereavement process:
- Interview with a mother and father
- Interview with a mother
- Interview with an older sibling
- Interview with Child Life Specialists
- Interview with Elaine Meyer, PhD, RN
Family Stories:
Remember, your child will be your greatest teacher. Learn from them. They will take you to the end of yourself. Go there. Even though it’s a hard road, I promise it will transform you, if you let it.
Jessica, mother of Ethan
- Some initial feelings
- Grief and coping after losing a child
- Second guessing and feelings of guilt
- Helpful things before and after
- Transitions and redefining normal
- Systems of support
- Missing links in the support system
- How I’ve changed
- Holidays, birthdays, & anniversaries
- Remembering our child
- Honoring Our Child
- Spirituality & faith
- The impact on our marriage
- Advice on things to say and not to say
- Words of wisdom
Sibling Stories:
How do I explain how neat a kid Zach was?…For people who never got to know Zach, he is a series of generalizations. A brother, a son, a drummer, a liberal, a cancer victim; but no one is merely the sum of their labels…because one thing is certain: I learned more about life, love and courage from my kid brother than I ever expected to.
Jennie, 18
Clinician Stories:
I think all too often we feel that we have to do something in order to be helpful and really what seems to be most important is to be without feeling there has to be a concrete outcome to what our actions are. So, being present is probably the most important thing we can do.
Joanne Wolfe MD, Palliative and Advanced Care Team
- Our bereavement clinicians
- Services available for families
- How we try to help families
- How we prepare ourselves and others
- Keeping in touch with families
- How clinicians cope with the death of a patient
- Finding strength after the death of a patient
- Advice for talking with surviving children
- Wisdom we learn from families we work with
A group of parents and health care providers has reviewed all of these contributions for appropriateness. The Bereavement Experience Journal was created by the Pain and Advanced Care Team, the Center for Families, the ICU, and the Department of Psychiatry.
Editor’s note: Please keep in mind that every patient is different, and discussions of alternative treatments, complications, and timelines may not apply to you. Additionally, some families identify medications and treatments that work well for them. The Experience Journals do not endorse specific methods. Each individual is different, and we invite you to discuss treatments with your doctors and nurses to see if they are right for you.