* 21 I think I’ve explained this before. Every hospice organization is required by Medicare guidelines to have a bereavement program, but there is no reimbursement provided through Medicare for those bereavement services. It was, is, expected, required, that the bereavement program be funded by donations. I believe anyone familiar with any hospice program is probably aware of the low key but ever-present way donation programs are promoted through community fundraising and funerals. Many if not most hospice programs are unable to fund much in the way of bereavement offerings. Some are reduced to supportive mailings and infrequent phone calls to primary support people, spouses, and families of those who died in hospice care. Our program was very fortunate. The monetary level and consistency of its donor base was reliable. It funded a full range of free counseling services for the loved ones of patients who died in the program, in as much or little intensity and frequency as they wished. It funded community group offerings that I have written about, free counseling services to any community members who needed support related to the death of a loved one, sudden/traumatic death support services to workplaces, schools, and churches, as well as single event educational and didactic presentations on a wide range of grief and loss topics. Any person or group that had issues related to anticipatory grief as a result of life threatening disease, or bereavement related to a full range of kinds of deaths, was eligible for services with little bureaucratic tangle and no insurance requirements. The variety of opportunities I was made a part of, and the skills I was called to employ, were wide ranging and stimulating. I felt proud of my lead role in developing and advocating this program and the kind of assistance it was able to provide. I hope to present a number of these stories over time and I’ll tell a few today. My hope is to get as many of the details as “right” as possible. Though I probably will make mistakes, I don’t believe they will be major or cancel out the intent of the stories I have to tell. Memory is fickle and inconstant. Many of the people I was called upon to help were in the throes of devastating loss, completely out of the range of what they ever expected to experience. Their lives were irrevocably altered, and most often they were very early into the process of reconciliation with that loss. They foundered in completely unfamiliar terrain and needed to find something to hold on to for balance and to restore their ability to breathe in a world that had become alien, unfamiliar, de-realized. Speech came hard. Even tears were difficult or would not cease. That they were able to find their way into my office (or have me to their homes) was probably close to miraculous. Very often a family member, friend, clergy or healthcare worker referred them. Very often they did not know why they were there or what to expect. *
* 22 A young couple had scheduled a meeting with me. They traveled some distance to see me. They lived across the bridge that spans the Straits of Mackinac. I was accustomed to having people come in from that kind of distance. I knew the details of their traumatic loss. Beyond doing some cursory research into the particulars of the kind of loss a prospective client brings to me, I tended to work hard to enter into my first meeting openly, even naively. I didn’t want to fill in too many blanks. I wanted my information to come from the people sitting before me, through my observations and listening to their story, This couple was barely in their thirties... if that. They were stunned. I was accustomed to that look. A combination of sleeplessness or too much sleep. They were very pale. They looked incapable of tears. Their expressions were flat and inexpressive. Speech was difficult. A few weeks before I met them their toddler, their first child, a little boy, was killed when the husband drove his truck out of the driveway without noticing the child was playing in the driveway. The boy was crushed under a rear tire of the truck. In spite of the horror of this occurrence, once they started, they seemed not to have much trouble relating the details of what happened, however flatly and expressionlessly they related them. In fact, I think they wanted to tell the story. It was important. Perhaps most important that the story be heard. I remember working hard not to let my horror show too much. I wasn’t sure what I could do or be, other than to be there and hear them. Surely, they would like some instructions about what they might do next. Mostly I think they wanted their boy back... if they were even capable of a full-time realization of how gone he was. A rift was opening up between them, however. I could feel it. They had no energy for argument, at least not the openly expressed kind of argument most couples engage in. As we spoke it was clear that any time that widening split between them was approached, they would back away simply out of the complete inability to look into it at the same time they were spun in the vacuum the death of their son left in their lives. I’m not sure how or if I helped them. They came back one or two times and then disappeared. I was pretty sure the rift that was splitting them would not close, would not be bridged. I was accustomed to witnessing the kind of relationship strength it takes to keep a couple intact after the death of a child. Even a normal death. If there can be a normal death of a child in a culture where children are not expected to die. Many unions do not survive even less tragic and terrifying losses of a child. I spent time with them identifying normal responses in such a situation. I spent a lot of time in silence with them and then identifying feelings with words they were unable to use or salvage from the wreck of their lives. I spent time making sure they understood that normal does not, in any way, mean easy. And that the uneasy depths of what is normal but horrific can last a long, long while... if they ever end. I hoped they found peace. I never knew. These are the experiences that change everything, experiences that actually alter the way one sees, how one goes forward... or does not. *
23
*
I was called to be a guest facilitator for a group run by nurses in the hospital with which our hospice was affiliated. It was a support group for parents whose in-utero child died, or whose baby was stillborn or died soon after birth.
While I felt gratified to be asked to take part in this group, I did not know what to expect and felt less than confident in my abilities to be something of an expert in this scenario.
In spite of my misgivings, I found the group very welcoming and eager to have me sit with them. It became clear early on, as it often does, that my expertise in the matters at hand was not necessarily the primary reason I was asked to be present. Facilitation, to me anyway, is less an act of leading and expertise than it is an act of conducting... of getting others to share their expertise and benefit from the expertise of the others present, like musicians in an ensemble.
The first thing I learned was that the variety of experience in pre-birth death, still-birth, or death soon after birth is just as varied as any other.
But the sadness of the question "why" was pervasive: Why were we only allowed to have them for such a short time? Why were we given such a stunning opening into our hopes for the future only to have them dashed?
Often, for those who leaned on their belief in a god, the experience of losing a longed-for, an already adored, child, called their entire belief system into question.
Personal story-telling in such a group is powerful and healing. And in this case, once again, anyone who might enter into the group and assume a role of expert, would almost certainly interrupt a more constructive healing process of this kind of story sharing.
There is a power in the sharing of sadness. Sadness brought out and shared with others in a circle of sad stories. This is perhaps the most humane and humanity affirming exercise of the species.
As it happened, this was a holiday season group session. The talk this day revolved around the idea that it had been expected that this would be the first holiday shared with a new baby in the house. Most of the group participants had purchased cribs and cradles and bassinets. Some had remodeled entire rooms, some had received many gifts through baby showers or other gatherings. What could they do with those things? Should they return the gifts? Should they donate them to others? How should they proceed through the holiday with the absence of a person who was never really there, had not ever really come into their lives? Was never brought home?
There is power in unanswered questions, power in the idea that allowing a question to remain unanswered, to float there, to be, is much more useful in many ways, than the myriad numbers of suggestions and the kindly but often premature and ill-advised advice given. There is power in letting emptiness be, in not feeling compelled to fill it with something before it is ready to be filled.
And what of the rights of a parent to grieve such a loss? Many times, as these parents spoke, it was clear they felt completely disenfranchised from expressing grief. They spoke about how their loss was minimized. They were repeatedly told they should have another child as soon as they could. Or they were not acknowledged, their grief completely negated, as if their baby had not lived at all... in their minds or in their hearts.
And it was particularly hard when a couple had differences in how they perceived the loss and how they wished to go forward. Once again, one was made privy to unstated rifts opening and widening in some couples, while others found strength in one another they didn’t even know existed... in a world they didn’t even know would be their world.
What would they do with that new world? How would they speak of this to their other children when they could barely speak of it to one another? How could they be with other family members whose advice and admonitions about the nature of their grief were at the very least hurtful?
How to think of a child, their child? Where are they now?
*
24
*
It is not an uncommon thing here for families to use snowmobiles as a primary mode of transportation for some day-to-day business. This includes transportation to and from school on snowy winter days.
Though many of the small cities in the area prohibit snowmobiles from operating within city limits (and even then, snowmobilers frequently ignore or are unaware of the laws), other cities, particularly those who depend on the income brought into the area by snowmobilers, actively encourage the use of snowmobiles in their city limits.
As it happened, a mother and her five-year-old daughter were traveling home from school on a snowmobile on a snowy day and were struck and killed by a industrial dump truck along a tricky curve that the main highway makes as it goes around one of the many lakes in the area just outside of their small town.
The small school system, pretty much contained in one building, asked for assistance the day after the tragic event, so about a half dozen of us, including some trained volunteers, made arrangements to be available to students and staff in various classrooms at the school.
I spent most of the day in the little girl’s classroom, with her classmates and teachers.
There is a beauty and a spiritualized acumen that children have when it comes to the experience of grief. I sat with one little girl who sat at a desk across from the desk of the girl who had been killed. We drew some pictures. She drew pictures of her friend. She visualized where she might be. There were no pictures of the horror of the accident, only fanciful dream-like visions of the girl in happy times, playing and smiling.
I let the children talk. And some did not. It was clear, at least at this age, the teachers and staff were in more directly accessible pain from the accident than the children and that our presence was primarily reassuring to them. They had many questions about how they could do the “right” thing. What should they talk about? What should they avoid? What about their own feelings? Should they share them with the children?
Perhaps there are right and wrong answers and directions for each of these questions, but I found that skills in active listening were more helpful to me... open ended questions, reframing statements and feelings, paraphrasing and even simply repeating statements made, and feelings shared, were most helpful. As a social worker my “toolbag” of solution focused advice and referral sources also came in handy, but advise, unless it is specifically requested, is often not very effective.
For kids, the biggest issue was often how the urge adults have to protect them from feeling badly results in misunderstanding and attempts to hide what is in clear sight and cannot be hidden. Children are not blind. They have the same “feelers” and empathic qualities as any adult, and while their language skills and ability to intellectualize experience my not be as fully developed, it is a mistake to assume that children can be hidden from tragedy when it is unavoidably present to anyone else.
There are many good books and articles on how to support children through grief and traumatic loss. I won’t go into that here, other than to ask that watchfulness and facilitating children in their own inherent abilities to process such loss might be the first choice in such terrible situations.
Watchfulness is paramount, because kids well into their teens are often at one remove from direct expression of their pain and tend to act it out rather than talk about it. We must be intimately aware of what they may be going through to keep them safe in the facilitation of their own processes of grief. We must pay attention. Kids are great at constructing their own survival strategies... we can trust that in them at the same time we must guard them from danger. It is our job... if we hope to have a future that is survivable for them and for their children.
The school personnel and the community in general were very grateful for our intervention that day. Later in the school year I was given a certificate of gratitude by the school superintendent at a school wide dinner in which such awards were handed out. I was to share it with the rest of the hospice staff. The community is a very close one and it was said that we had helped them make the tragic events of that day one that strengthened the community. I was proud to receive such an honor.
The dinner was a simple buffet, and while they ate people sat in comfortable and talky groups of couples and children. I noted the only couple sitting by themselves was a mixed-race couple. I sat with them and had good conversation while we ate.
*
* 25 She came to see me a few months after her son was killed in a grisly automobile accident. He was a young father, had one child, an infant at the time, and he was the eldest of her two sons. She traveled to the hospital where he was taken near where the accident had taken place, quite a distance from her home. She was not allowed to see his body. This was something she was angry and despondent about. It was a main theme early in our work together. She wanted it done, over with. The entire framework of reference in her life had transformed. She was persistently numb, just going through the motions. I believe one of the reasons she continued to come to see me was because I never insisted that things would get better. Mostly because I am never sure, in these situations, whether they would. Things become more tolerable in the somewhat distant future. Things become accepted. I don’t believe that has any relevance to the idea of things getting “better”. Things became different. Remembrances less sharp and intrusive, sometimes more welcome, sometimes purposefully called forth.... to regain a feeling of completeness, to regain the wholeness that was lost when her child died. When anyone’s child dies. To call forth welcome tears. Our conversations were a mix of remembrance and allowing often repetitive and grinding review of the circumstances of his death and the unfortunate and all too common family conflicts and rifts that emerged after he died. He was everyone’s favorite. He was a family consensus builder. He was kind and empathic. He took care of everyone. Why didn’t they let her see his body? She wanted to stop imagining how he was hurt. She wanted to be able to touch him a last time. She came to see me intermittently for quite some time. She and her husband attended one of the six-week evening grief and loss groups. I became quite fond of them, and our work together became quite informal and eventually on an “as needed” basis which included phone calls and emails. Her son’s wife remarried. More and more as time went by, she found herself left out of events in her grandchild’s life. This was extremely painful and retraumatizing. Her second son appeared to be resentful of being, in fact, the second son... although I’m not sure she would have reported his fluctuating relationship with her and her husband in that way. She missed her deceased son terribly and it intruded into her relationships with everyone else. Despite this she was able to get on with her life on a day-to-day basis. But the wound wouldn’t really heal and her entire perspective and affect had been irrevocably transformed. She missed him terribly all the time and forever, it seemed, and being gradually left out of his child’s life and the life of his wife left gaping chasms in her perception of her world and her dominant mood. She was angry and resentful toward them. She was angry and resentful toward everyone. Our meetings and conversations after a few years dwindled. One of the reasons for this was how I dealt with the increase in her drinking habits as well as the gambling habit that her husband developed as the time passed after his son’s death. I made her angry at times even bringing these things into the conversation. Perhaps I did it clumsily, wrongly. I don’t know. How is it done “rightly”? It became more of a problem when it became obvious that her late-night messaging to me via email and social media was spurred on by drinking. Meanwhile, her husband’s gambling at the nearby casino worsened and placed them in some real financial hardship. This was not an uncommon scenario. Gambling unleashes the same brain chemistry as drug and alcohol use, and I encountered this pattern of increased gambling often enough in my bereavement work. I recall one couple, she was in the program for a terminal condition, who bragged about their winnings at the casino during almost every meeting I had with them. One would have expected that they rarely if ever lost. Not long after she died, however, he lost his home due to gambling related debt. I was unable, however gently or circuitously I approached the subject, to get any movement on this issue with her and the more it became a primary concern and stumbling block in her recovery (as if recovery is even an appropriate or accurate term for the impact and duration of grief over the loss of a child) the less I saw her. Sometime later, after I left the hospice program, and had gained life coaching certification through an internationally accredited coaching school, she contacted me and asked about the possibility of starting coaching with me. I said I was more than happy to, but that her drinking and her husband’s gambling would have to be a part of the conversation. She was immediately angry. But I could see no other way. Her and her husband’s addictions had clearly supplanted her son’s loss as the primary cause of her troubles. Perhaps that was easier for them. I am not in any position to question the way people survive such losses. I don’t believe I heard from her again. Funny story (and a kind of a postscript to the story’s completely un-funny outcome): This happened quite early on in our counseling relationship. I noted at the same time I was working with her that I was having increasing problems with the urge to yawn during my sometimes very intense and emotional sessions. This was embarrassing and strange. I was not particularly tired or sleep deprived when these yawns would insinuate themselves. At any rate I thought I had conquered the problem by becoming a very accomplished yawn suppressor. I was convinced I could suppress any yawn without it being noticed, though I was left in the dark about why, when I was so rapt in listening and being present and empathic, these urges would arise! During an afternoon session with me (she would come in after she finished her workday) a yawn arose and though I thought I had successful and surreptitiously suppressed it she said to me “Oh, go ahead and yawn... I’m tired too”. We both laughed, I apologized and explained that I was mystified about why this happened, though, I reassured her, it had nothing to do with my interest level in our conversation. To my recollection it never happened during our sessions in the months afterwards. Later, I was able to figure out what was going on, however. One of the yawning mechanism’s jobs is to replenish the body’s oxygen supply when it is running low. In my self-observation of what exactly was happening when these unwanted yawns would emerge, I discovered that while I was listening so intensely, I was either breathing very shallowly or my breaths were quite far apart. I was, in fact, forgetting to breathe! Once I discovered this and made sure I paid attention to the frequency and depth of my breathing in sessions, I rarely if ever had that problem again. I want to add as well, in light of what may be perceived as an unsatisfactory outcome of my work with this couple, that I liked them very much and I understood, still understand, how difficult the loss of their son was to them, and that they were doing the best they knew how... the best anyone could do under the excruciatingly personal and tragic circumstance. One does not pass judgement according to some random and subjective measurement scale of what is success and what is not. One does the best one can and I believe my role assisted them; that without being given the opportunity to traverse their country of grief not altogether alone, things could have been much much worse. I don’t believe there is much real healing after the loss of a beloved child, the wounds run deep and enduring, regardless of the defense structures built and maintained over the years. Some appear to do better than others, some fall apart and spend a great deal of the rest of their lives putting the pieces back together. Some do better early in the process and then find they have missed something. Often it feels like an opportunity of some kind that has disappeared from their grasp. There is no way around this. It is a fact of the circumstance and how we are composed. We are fortunate enough to have grown into a culture in which the deaths of children are rare enough... though there are emerging patterns in the culture that are alarming, and it certainly hasn’t stopped us from unleashing great and gruesomely powerful engines of mass death elsewhere in the world. Does it take the death of one’s own child to make any of us truly understand what we do when we minimize, delegitimize, the nature of the grief of parents and siblings, friends, and neighbors, of children dying, being murdered, the world over? How is it we feel, some of us, that we can place the deaths of children in a category of the function of our right to behave freely in the world regardless of the consequences? To behave the way we wish regardless of the outcome and impact on others in the world? What is the process of our legitimization of that horror? *