Understanding Sibling Grief

Girls riding on bicycles

Epilepsy News From:

Tuesday, September 15, 2015
Kellie Jankowski

We are proud to introduce Kellie Jankowski, our new SUDEP Institute support and community program coordinator. Kellie just recently received her certification in grief counseling and wanted to discuss a topic that had particular interest to her as she went through her training.

My name is Kellie Jankowski. My husband Craig and I have three daughters. Our oldest, Dakota, was diagnosed with epilepsy when she was five years old. In November 2006, Dakota passed away at the young age of 16. The diagnosis was sudden unexpected death in epilepsy, or SUDEP. We had never heard that term before. 

I contacted the Epilepsy Foundation of Michigan to gain understanding of SUDEP. I worked through my grief by joining a support group, teaming with the Epilepsy Foundation to bring awareness, and getting certified as a grief counselor. 

During my training, I was really struck by information regarding siblings of those that have passed and how we talk about loss with them. Having two daughters affected by the loss made this topic interesting to me. I wondered if I had provided them with the support they needed instead of being blinded by my own grief.

The death of a sibling can have a deep impact on children depending on (1) their relationship with the sibling, (2) their age and awareness of the loss, and (3) parents’ ability to support the surviving children as they mourn the severe loss themselves.

The way parents handle their grief can affect the bereavement process for the surviving children. In certain cases, grief over the loss of a child may cause a parent to pull away or become emotionally absent from the surviving children. When this occurs, the surviving siblings may feel guilty for being happy or for needing the parents' support. They may fear that their parents may never recover from the loss and then  feel a need to take care of their parents or be perfect to avoid upsetting them further.

What is the parent’s role in supporting grieving siblings?

Bereavement Specialist Maria Trozzi stated, “To ensure that children develop and master emotional skills as they process an initial loss and then face perhaps more profound ones in the future, caregivers have three major functions: 

  1. to foster honest and open relationships with children, 
  2. to provide a safe and secure space in which children can mourn, and 
  3. to be role models of healthy mourning.”

When dealing with the loss of a child, it is important to have an active support network, as well as a safe place to express your grief. Managing your own grief effectively will ease the burden surviving children may feel and offer them a positive role model for coping. This creates a supportive environment for them to express their own grief.

If your surviving child seems affected in ways you don't feel as though you can address on your own, such as symptoms of clinical depression, seek a qualified child therapist for extra help. 

Tips for Supporting Children Through Loss

  • Give the child the opportunity to tell their story. Let them know you really want to understand what they are feeling or what they need. Encouraging them to share their feelings with you will enable them to sort out their feelings. Be prepared though; these feelings might hurt or distress you.
  • Be a good listener. Don’t judge the child’s responses. We all grieve in different ways. There is no right way for people to grieve.
  • Understand all children are different and unique. Don’t assume that children in a certain age group understand death in the same way or will have the same feelings. Help children understand loss and death. Use some of the resources in the next section to help.
  • Be Patient. Grief is hard work and it is a process, not an event.
  • Be honest. Don’t lie or tell half-truths to children about the tragic event. Children are sensitive. They will see all information is not being provided and will wonder why you don’t trust them with the truth.
  • Be aware of your own need to grieve. You will be able to help your children work through their grief if you are receiving help yourself.
  • Recognize they have suffered a double loss. They have not just lost a sibling, but also their parents and other family members as they knew them before. Their role within the family may have changed. They may be an only child now, or perhaps now they are the oldest and with that they feel a change in responsibility.

Some of the above tips may not be easy to hear or learn because grief and remorse are great for parents. I know this, because this information made me question my role in supporting my daughters. 

My middle daughter is the one who found Dakota that fateful morning. I often wonder if I allowed her to tell her story and her thoughts about that morning. Did I give her the proper time to mourn and to give voice to her thoughts and feelings? My own grief consumed me. 

Our church reached out to me about a support group, which I joined, and there I was able to learn how to listen to my daughters and husband and take their feelings into account. They were hurting as much as I was. Through the support of the group, family, and friends, I was able to work on my own grief and in turn help my daughters. 

Remember, you are not alone.

Family, friends, clergy, support groups, and mental health professionals are here to help to us if we let them know we are in need.

Don’t hesitate to reach out to the SUDEP Institute for support. Learn about our Bereavement Support Services and check out our new online community. We also have a section dedicated to children and grief in our SUDEP Resource Guide. Email sudep@efa.org to get your copy today.

Kellie Jankowski, GC-C, is the support and community program coordinator for the SUDEP Institute. She contributes regular articles as part of our bereavement support services. You can contact Kellie at kjankowski@efa.org. Learn more about our support for bereaved.

Authored by: Kellie Jankowski GC-C on 9/2015
Books for Grieving Children

Johnson, J., Johnson, M. (1982). Where’s Jess? For children who have a brother or sister die. Omaha, NE: Centering Corporation.

This easy-to-understand picture book for children aged three to six is considered a classic about sibling grief. The authors wrote it after losing their daughter Jess to sudden infant death syndrome (SIDS).

Jampolsky, G.G. (Ed.). (1983). Straight from the siblings: Another look at the rainbow. Millbrae, CA: Celestial Arts.

This collection of images and quotes from bereaved brothers and sisters, for children aged nine to twelve, is a memorial to love between siblings. The quotes and stories by the bereaved siblings who contributed to the book describe not only the sadness but also the difficult feelings, such as jealousy and guilt that have troubled them. 

Park, B. (2009). Mick Harte was here. New York: Scholastic.

In this paperback for sixth- through ninth-graders, eighth-grader Phoebe must come to terms with the death of her fun-loving brother Mick after he is killed in a bicycle accident at age twelve. The story leavens sorrow and grief with humor in capturing the pain that Phoebe and her family go through as they try to cope with their loss.

Ruiz, R.A. (2001). Coping with the death of a brother or sister. New York, NY: Rosen Publishing Company.

This hardbound book for seventh- to twelfth-graders offers honest, descriptive narratives in which young survivors of sibling loss talk about how they handled their grief. When a brother or sister dies, everything changes for the survivors, even if the death occurred when the surviving child was very young. A chapter on finding additional help and resources speaks to youngsters who may be coping with feelings of anger or rage in the aftermath of their loss. 

Trozzi, M. and Massimini, K. (1999) Talking with children about loss. Words, strategies, and wisdom to help children cope with death, divorce, and other difficult times. New York, NY: Penguin Group.

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline