The Family of Grace, Joe, and Kris

by Alan Wolkenstein, MSW

                          Losing a child is a parent’s worst nightmare come true.

                                                                            Laura Debbink

     Kris was only five when he died. He was a small, frail child who was afflicted with a rare genetic disorder that robbed him of life and his family of a future with him. I think about them sometimes at night or when I am emotionally still. My heart still weeps for them.

     I met them when I was working as a medical social worker at a local hospital. I was young and just beginning the struggle to find myself as a professional social worker—married, having a small child ourselves, with our future unclouded, unlike theirs.

     Sessions with the family began during another stay for Kris in the hospital but soon shifted to home sessions on late Friday afternoons, so the family would not be any more inconvenienced than they were. Grace and Joe were wonderful people and gave Kris all their attention, love, and commitment. I listened, seldom offered advice, and tried my best to be there fully and completely for them. I had excellent supervision and was successful most of the time in being “in the moment” for them. When I failed, when my mind wandered to avoid my own pain and discomfort, they made me aware of it and we worked together to regain the emotional footing we all needed.

     Kris was non-verbal, never left the house, and the needs of the family exceeded anyone’s professional skills, especially mine. I put in immediate referrals to a psychiatry center for a child therapist, a physical therapist, and a play therapist. Grace and Joe were afraid to talk to Kris about his illness and were reluctant to share options and possibilities with me or any of the therapists.

     As Kris’s condition deteriorated and hospitalizations increased, Grace and Joe began to talk about his dying, funeral arrangements, and burial plans when Kris would pass. They shared with me the request by his doctors for his body to be used for medical science. When I asked how they would feel in doing this, they replied it was wrong and they believed it was against their religion, but they would feel guilty in not doing so.

     “Guilty?” I asked.

     “Yes, they had been kind to us all and maybe Kris can now help them understand  more about the disease.”

     “Doesn't feel good to me to do this out of guilt.” I told them my belief was that Kris deserved a place to rest, and they needed a place to visit for the now.

     It seemed as if time stopped for us all. I remember we were sitting in their living room, and the fading sunlight was struggling to light the room. None of us spoke. There was a sense of eeriness that hung over the room. Grace broke the stillness by getting up and turning on some lights. “Well, we have learned that we must not do things out of guilt, but what else are you thinking?” I cleared my throat. “It seems to me that you will need a place for Kris to rest forever and for you to go to mourn his loss, to grieve, and to suffer the loss of him.” With a slow voice, I added, “The mourning will always be there, but the suffering will lessen over time, and I believe you will need such a place to go to.”

     They were silent, and we looked at each other. “Maybe we should have a conference with your pastor, also.” Joe said they would call him and set up a session with us as soon as possible. Time was running out. Grace said that they had a church they seldom attended, had a pastor they hardly knew, felt isolated from the other church families, and seemed to have not considered any of them as a source of strength or emotional help.

     Two days later, the four of us met in my office at the hospital. Kris was failing, and Grace and Joe were distraught and tearful, but Pastor Bill was loving and supportive as we talked. Pastor Bill said he knew of their situation but not them personally. He was here to offer what he could. He said there was no real prohibition to doing what the doctors asked, but certainly agreed with the need for a proper funeral and burial. At the end of the session, Grace asked Pastor Bill to lead us in a prayer for Kris and to help them accept the inevitable. They wanted me to be a part of this, and I was. As they were quietly leaving the office, Pastor Bill embraced them both and asked if he and the church could support them and be there for them. They didn’t respond but slowly walked away….

     Kris passed the next morning. Kathy and I attended his funeral and his burial. I haven’t stopped grieving his loss these 40 years, and sometimes, but not always, think about how old he would have been if not dying so long ago.

     I saw Grace and Joe a few times after that. They chose to return to the town where they were from and wrote a few times and always called me on the anniversary of his passing. After about four years, they wrote to say that they were doing better and had adopted a baby boy and assured me that they did not name him Kris. “Alan, you would have disagreed with that, and we know that this baby is a person unto himself. We stopped visiting Kris’s grave annually, but if driving nearby, we stop. Someday, we will take Bobby there also.”

     This story presents multiple issues and concerns:

• How would the social worker deal with one’s own uncertainty in a challenging and complicated situation?
• In what ways might an inexperienced social worker differ from a seasoned veteran in working with this family?
• How could supervision be helpful and enlightening?
• What about the social worker’s own family?
• Was that an important issue in supervision?
• Why would a supervisor assign such a family situation to a new social worker? Why not?
• Was it wise to bring in the other professionals?
• What more could have been done to increase their effectiveness and collaboration?
• Should the social worker have offered such specific personal thoughts on wanting Kris to be buried and for the parents to have a place to assist in their mourning?
• Would a gravesite really be helpful to their grieving?
• Did the social worker attempt to relate to Kris during sessions?
• What would you have suggested?
• Where in the process should the social worker consider a consultation with a thanatologist?
• How do you distinguish mourning from grieving?
• Was it therapeutic to invite the pastor to a session?
• What does “accept the inevitable” mean to the reader?
• What might the pastor be dealing with in this scenario?
• Should the social worker and his wife have attended the funeral?
• How should the social worker have encouraged Grace and Joe to seek counseling in their town to explore and plan for sharing Kris with Bobby?
• How could the social worker best process these critical issues in his personal and professional life? Is that even possible, considering the parents were witnesses to the slow death of their child?

     There are other questions. Readers are always invited to reflect on their own experiences and hopefully share and enhance problem solving skills so necessary in our profession.

Alan S. Wolkenstein, MSW, is a retired Clinical Professor of Behavioral Sciences in Family Medicine, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin.