Supportive Voice  Vol. 7 No. 2  Spring 2001

by Mary Ann Collins, MSHA, and Sr. Judith Carron, RSM
 
Ms. Collins is manager for the FOOTPRINTSsm program, director of mission, and a member of the ethics committee at Cardinal Glennon Children's Hospital, St. Louis. Sr. Judith Carron, RSM, has been the director of pastoral care and chair of the ethics committee, and is a member of the advisory board for the FOOTPRINTSsm program and is a member of the ethics committee. Cardinal Glennon Children's Hospital, 1465 South Grand Blvd., St. Louis, MO 63104.

"I feel like someone just put their hand in my chest and ripped my heart out!"

This expression of grief describes the agony parents feel with the death of their child. Perhaps nothing is more devastating or painful than the death of a child-one who represents life and vitality, who brings us face to face with our mortality and limitations, causing deep feelings of anxiety and powerlessness. Such experiences are so threatening that most parents initially feel they will not survive them. An unknown author once wrote: "When you lose your parent, you lose your past. When you lose your child, you lose your future." When a person comes face to face with death, what used to work, does not; what used to be important, is not. What, then, does help? Grieving is what helps!

Edgar Jackson, who has written extensively about death and dying, says: "Grief is the disease that heals itself-it is a process of mourning which restores life to us". (Understanding Grief, Abingdon Press, Nashville, TN, 1957). The greater the loss, the longer the process. And what is important to remember is that grief does not begin at the time of the child's death, but rather at the time the family hears that the child may have a life-threatening or terminal illness. It is then that the family begins to suffer the potential losses for the child. It is often at that point that parents will ask how they can survive with such intense feelings of sadness, pain, fear, anger, guilt, helplessness, and loss of control. Such feelings can make them feel weak and vulnerable. These feelings need to be expressed so healing can take place. Sometimes, parents and family members find it difficult to share deep emotions with other family members or friends who have different expectations regarding the grieving process. Often we as caregivers become the persons with whom the family is able to share. In fact, parents often have more inner strength than they know.

One of our primary goals as caregivers is to help parents and family members find that inner strength, which, like an underground spring, is waiting to be tapped. Frequently, they need someone to facilitate a process that promotes rebuilding, restructuring, and healing-a process that requires an orientation very different from our culture's fast pace. We have learned that minimizing the loss or minimizing grief interferes with the resolution of grief. We can be invaluable if we listen to the family's story, share in their pain, offer support and comfort, and attempt to challenge them to behaviors we know from experience to be helpful in the grieving process. One family's story illustrates this point.

David was transferred to our hospital with severe hydrocephalus. When he was several weeks old, well meaning caregivers at the referring hospital encouraged the parents not to get attached to David because he might die. Yet, in our experience forming attachments is a very important part of the grieving process because, if one is not attached, they cannot detach or let go, and grief may never be resolved. Working with David's family members, our staff encouraged them to visit, hold, touch, take pictures of and talk to their baby, as well to express their feelings of sadness and grief. We were the facilitators in having the family express their feelings and anxieties. By valuing David as an individual, the pain of his loss was validated and the family could grieve and move on. A letter from David's dad expresses how important it was for them to have health care providers who encouraged them to bond with their baby:

"I am a very lucky man, because when I needed help, you were there to help me . . . While my son, David, was hospitalized, I had the great good fortune to be among people who practiced humanity as well as medicine. I was among people who understood the hopes and fears, anxieties and sorrows of parents whose children are severely ill or disabled. When I needed someone to talk to, someone was there to listen; when I was depressed and needing encouragement, someone was there to encourage me and lift my spirits; when I felt very much alone, someone was there to remind me that I was not alone. At your hospital a child suffering from a serious disability is not treated in a vacuum. Instead, the child is always considered in a much larger context as a part of a much greater whole: as a part of his family and ultimately as a child of God. I was among people who gave me the opportunity to be a father to my son."

The staff caring for David simply encouraged David's parents to participate in activities normal to all parents, and, at the same time, opened the door for them to begin to heal some of the hurt of mourning the loss of David.

In addition to forming attachments and bonding, we also believe that making memories and keeping memories alive are integral to the grieving process. Parents, siblings, and other family members need to do this! Talking about, sharing memories of, looking at pictures and possessions of the child, facilitates the grieving process, not only initially, but for years to come. Our FOOTPRINTSsm program offers specially designed memory books to all parents, suited to the age of the child. We encourage family members to write down and cherish the memories the book holds- favorite poems, favorite colors, letters to the child, drawings by the child, handprints, footprints, locks of hair, etc. We encourage them to journal anything meaningful that gives life to the memory of their child. We have found that it is not helpful to minimize the loss and to pretend that "out of sight, is out of mind" so that no one talks about the child who has died. It is also inappropriate to foster the mentality that it is "normal" to "tighten your belt" and get back to the routine. Indeed, the routine has been interrupted and will never again be the same.

Making memories and keeping them alive often involves honoring special requests parents and family members may have for their children. It is important that we, as caregivers, listen for these needs with an ear bent to being creative and flexible in what is often a structured and restrictive environment. For example, Adam was a severely ill newborn attached to multiple life support systems. His parents were told he would probably die. One day, his mother said, "I have one request: I'd like to take Adam outside. I don't want him to die having only seen the walls of a hospital." Our first thought was of what that would involve: taking Adam, his respirator, and all his equipment outside. After talking with his doctors and nurses, we decided to give it a try, knowing how important it was to his mother. So, on a beautiful sunny day, Adam went outside with his mother and several members of the hospital staff. His mother sat on a picnic bench and held him in her arms, tears streaming down her face. One of his doctors picked a daffodil and placed it in his tiny hand.

Several weeks after Adam had died, we received a letter from his mother. She wrote, "I am extremely grateful for all the support in getting Adam outside. I was almost afraid to ask, for fear that someone would think it very strange, and yet, that is my greatest source of comfort-him holding a flower and getting a bug on him, as all little boys should. That day is still my most comforting memory, and I was afraid someone would laugh."

Later, she wrote, "I think of the day we took him outside, and how it was my way of letting Adam go, of offering him to God, with faith that his suffering would end, but mine would really begin." This is a woman who understood that grief is painful but who had the courage to enter into it so that healing could take place. Clearly, any stress felt by the staff in accommodating the wish of Adam's mother was more than relieved and justified. Mom was able to feel comfort, to let Adam go, and to "enter into" her own grieving process. Compassionate caring for people must always be our focus. If we are able to facilitate activities that honor the child, regardless of the inconvenience to the staff, we provide the family with significant opportunities that enhance their own healing.

Finally, and equally important, is the need for the family to feel there is meaning in the life of their child, however short it may have been, and whatever the age of the child. Parents need to know that their child had a reason and a purpose to exist. They often need to feel some kind of a connection between the child and the divine or eternal presence, whatever that presence may be for them. There is need to experience the "sacredness" of the child's life and death, even if the parents are angry with the divine presence.

In our experience, ritual and symbol, both before and/or after the death, offer the connection that helps to celebrate the child's life. There are many ways we can invite family members to participate: Baptism; dedications; prayers; blessings with oils; playing of the flute; use of the dream catcher; bathing rituals; story telling, etc. In one case, a dad wanted to bless his baby's stuffed lion, and the pastoral care staff was able to quickly put together a service in the chapel to do so. Dad saw the lion as a source of strength and after the blessing, placed the lion in his son's crib. Any or all of these rituals can offer comfort and an opportunity to honor the sacredness of the child . . . to create additional memories, and to help with beginning to heal the unspeakable hurt and pain the family experiences.

Grief is not something we get over. The way out is through entering in. Grief is normal! Grief is hard work! It involves time, patience, and not knowing the answers. No two persons will grieve alike. Each person, parent, child, family member, or friend will grieve differently, and each way of grieving is "the way" for that person. Parents and family members will often feel they are the only people ever to experience these feelings and will benefit from knowing they share a connection with all others who have mourned similar losses. As caregivers, we can help them understand that there is no "magic" time frame for grief to be over . . . one will never get over the loss of a child! Instead, we can encourage them to take the time that feels "right" for them; to feel the feelings they have and to find someone to share those feelings with; to not be afraid of the pain and to realize there will be a day when they are able to feel happy and ready to smile and love again.

Letting go and saying good-bye is never easy; yet, it is the process of mourning which restores the life in us.