The Colors of Healing

from Caring For Our Future, Summer 2005

By Geri Nelson, LCSW, Coordinator of Bereavement Services

In August of 2001, The Department of Family Services created a Bereavement Coordinator position in the Pastoral Care Department at The Children’s Hospital. Over the past four years, with the guidance of the larger Bereavement Council, an ongoing program of events, support groups and activities for bereaved parents and their families has been created. This program is called “The Colors of Healing.”

While everyone at Children’s is involved in improving the lives of children, the bereavement coordinator has the unique honor of getting to know the children through voices other than their own. The Colors of Healing program allows the bereavement coordinator to get to know children who have died through their parents’ voices and memories.

When a child dies while receiving care at Children’s, the goal is to begin bereavement support before the parents leave the hospital. Prior to leaving the hospital, each family is given a packet of information. This “grief packet” includes supportive written information, family resources and bibliographies about grief and the loss of a child. The packet also contains a brochure about The Colors of Healing bereavement programs. Shortly thereafter, a condolence card is mailed to each family. Contained within that card is the implicit suggestion that it is difficult to grieve alone and that healing can come with meeting other parents who also have experienced the death of a child.

Parents Invited to Numerous Events

Over time, parents are invited to participate in a variety of different events. Many of the programs offered through The Colors of Healing are one-day or one-evening activities. For example, because the winter holidays of Thanksgiving, Hanukkah, Christmas and New Year’s are difficult for grieving parents to navigate, parents who have lost a child are invited to return to Children’s for a time of remembrance in December.

During the evening, parents make luminaria to initiate gentle storytelling about their child. Recently, The Colors of Healing program held the first scrapbooking day, during which parents made a concrete memories of their child by building a photo album. It was inspirational to see families who might otherwise have difficulty talking about such a tender experience laughing and crying with a family member as they sorted through pictures.

The Colors of Healing program also sponsors an annual event with a national speaker, usually someone who is well-known and who also is a bereaved parent. The speaker is someone who can share his or her personal experience while offering encouragement to the parents and family members who attend.

Another facet of The Colors of Healing program is “Remembering Our Children.” This annual memorial service is held on a Sunday afternoon in the spring, prior to Mother’s and Father’s days in the Vestal Education Center at Children’s. All families who lost a child the previous year are invited. Many families attend and come from as far away as Montana . One family from Bozeman was motivated to attend to hear their child’s name read out loud, to revisit the place of their child’s hospitalization, and to reconnect with other parents and staff they had met while their child was at Children’s.

Another family told us that the memorial service was their child’s service; they had had no other memorial. Comments such as these confirm the importance of this type of event and reaffirm the importance of encouraging each family’s expression of sadness, hope and courage while continuing to live their lives without their child’s physical presence.

Along with single-day or evening events, parents are invited to participate in grief support groups. These nine-week sessions include a concurrent group for siblings. The closed groups are held at Children’s, and each week’s agenda builds on the discussion from the week before. Understanding the complexities of grief is a major focus. The group process itself goes a long way to support each family’s unique style as they struggle through this life-changing event.

Program Helps Parents Realize Their Own Needs

Helping parents advocate for their own personal needs among family and friends is another important focus. Parents often express a feeling of being isolated with their hurt. The grief support group makes it possible for them to meet other bereaved families to decrease that isolation. There are visible changes in a parent’s appearance from the first week to the last. As one mom stated, grief support groups are “like someone putting a fishing net in the water and catching you while you are drowning.”

The Colors of Healing program also recently produced a film, “Grieving and Hope: Living with the Death of Your Child,” to better share a parent’s perspective. This film was made to connect with newly bereaved parents, to decrease their feelings of isolation, and to normalize their experience. In the film, parents whose children have died are exquisite in their ability to tell their stories. This short film has captured national attention and recently won an award at the 2004 Pediatric National Hospice and Palliative Care Conference. The film is offered in VHS or DVD format to every family who has lost a child. It is also an excellent teaching tool for Children’s staff, family and friends who can help others better understand the many facets of parental grief.

To keep staff abreast of parental bereavement programs and grief issues, the Bereavement Council sponsors the lunchtime session “Good Grief at Noon” on the third Tuesday of each month in Children’s Lecture Hall. All staff are invited to learn more about issues pertaining to grief and bereavement. Topics in past months have included the ethical and grief issues surrounding organ donation and sudden infant and sudden unexpected death syndromes. In June, Good Grief at Noon took a look at the Butterfly Program, the inpatient and outpatient hospice program that is celebrating its fifth birthday.

Overall, The Colors of Healing bereavement program has grown with amazing speed in the past four years. Hospital staff have helped encourage that growth by telling parents about the programs, encouraging their participation and providing them with grief packets. These programs are open to those outside the Children’s community as well, and many bereaved parents are referred by other sources.

It is our hope that staff gain comfort in the knowledge that parents are followed by The Colors of Healing program after they leave Children’s. Parents who suffer the wound of losing a child receive support and have opportunities to meet others who also have lost a child. Many parents respond to those invitations, sometimes only after a number of years have passed. What they teach us about their journey is the guide we follow to continually build The Colors of Healing programs. They are heroes.