What Forever Means After the Death of a Child

Transcending the Trauma, Living with the Loss

Kay Talbot

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781135057534
• Edition: 1
• Topic: Psicologia
• Subtopic: Storia e teoria della psicologia

List of Tables. List of Figures. Series Editor's Foreword. Preface. Prologue. Acknowledgements. What It Means to Be a Parent After a Child Had Died. The "Mothers Now Childless" Study: Research Design and Findings. When a Child Dies, Does Grieving Ever End? One Death - A Thousand Strands of Pain: Finding the Meaning of Suffering. Bereaved Parents' Search for Understanding: The Paradox of Healing. Confronting a Spiritual Crisis: Where is God When Bad Things Happen? Confronting an Existential Crisis: Can Life Have Purpose Again? Deciding to Survive: Reaching Bottom - Climbing Up. Remembering With Love: Bereaved Parents as Biographer. Reaching Out to Help Others: Wounded Healers. Reinventing the Self: Parents Ask, "Who Are We Now?". The Legacy of Loss. References. Resources. Appendices. Index.

Chapter 1

What It Means to Be a Parent After a Child Has Died

“Your absence has gone through me like thread through a needle.
Everything I do is stitched with its color.”

(Quoted by Bertman, 1997, author unknown).

Becoming a parent is a life-changing experience. Prospective parents prepare for the event in a variety of ways, but nothing totally prepares them for the multiple joys and challenges of parenting. Babies do not come with operating instructions. Parents learn by doing, by trial and error, building up a store of knowledge about what it means to create, sustain, and nurture a new life. For most mothers and fathers, parenting becomes a part of their identity—who they know themselves to be and who they are known to be by others in society.¹

When women were asked in one study to name their most powerful learning experiences, “the mothers usually named childbearing or child rearing” (Belenky, Clinchy, Goldberger, & Tarule, 1986, p. 200). Motherhood has been shown to be associated with increased feelings of self-esteem. Having a child and performing the duties of motherhood can offer a new sense of purpose and contribute to a “sense of greater strength and maturity as a person” (Leifer, 1980, p. 167). Fathers also recognize the powerful impact becoming a parent makes on their identity. Many bereaved fathers have written about their experiences after their child has died. (See, for example: Allen, 1995; Bennett, 1998; Bramblett, 1991; Deford, 1983; Edler, 1996; Ford, 1985; Gunther, 1949; Hackett, 1986; Koppelman, 1994, 1998; Kushner, 1987; Livingston, 1999; McGovern, 1996; Morrell, 1988; Quezada, 1985; Ramsey & Ramsey, 2000; Robinson, 1998; Rouner, 1989; Sittser. 1996; Strommen & Strommen, 1993; Walsh, 1997; Wolterstorff. 1987.)

But what does it mean to parent a child who has died? What does it mean to parent the surviving child or children after a sibling has died? What does it mean when no one calls you “mother” or “father” again after the death of your only child or all of your children? These are the painful questions that confront bereaved parents in very personal ways on a daily basis. Anita,² who was interviewed 6 years after her son and only child died at age 15, provides an example:

I'm always thinking of him. So, to me it's just the pure aggravation of hell. And I haven't enjoyed life since. I've tried to teach myself to somewhat enjoy it, but I don't enjoy it. I put on a fake face—because people think I'm doing fine—but they don't know how I feel. [As a result, she] feels like a time bomb ready to explode. I don't know from one moment to the next how I'm gonna react or think or do. And my mind, it seems like it doesn't center like it used to, on track. I wander. . . . I'm just totally a different person from it. Brad was my whole life. That was the one thing I wanted was to have a child. . . . I just suffer every day. I always think about it.

Frankl (1978), Bettelheim (1952), and others have pointed out that even suffering can have meaning if it changes oneself for the better. Changing oneself often means rising above oneself, growing beyond oneself. The death of a child presents the kind of suffering and challenge to self that creates an existential crisis—a search for the meaning of human existence. Attig (1996) called this a need to relearn the world. There is no prescriptive cure for this kind of existential suffering; however, there are responses that can promote healing and resolution. Bereaved parents commonly use two approaches as they struggle to make sense of their existential questions: logotherapy—therapy through meaning discovery (Frankl, 1955, 1963, 1969, 1978, 1997)—and meaning construction/reconstruction³ (Raskin & Lewandowski, 2000).

Bereaved parents pursue so many painful questions and complex issues in their quest to understand what their child's death means for their lives. I am not alone in believing that both the lack of meaning and meaning-making efforts greatly influence the quality of life of bereaved parents. Researchers and clinicians are paying increasing attention to this crucial aspect of grieving, as discussed further in chapter 4.

THE SEARCH FOR WHAT SURVIVAL MEANS

When I began to design my research of what it means to survive a child's death, I knew I needed to study parents who were not in the early years of acute grief. At that point, 10 years after my own daughter's death, I knew what surviving meant for me. But I didn't know how or whether my experiences might be like those of other bereaved parents. I wanted to understand what life many years later was like for them. How were their lives similar or different? What helped and what hindered them in living life and facing the future without their children?

To answer these questions I knew I would need to ask not just those bereaved parents who felt they had survived, but also those who felt they hadn't survived. Don't we really understand something by defining both what it is and also what it isn't? Isn't this true of all inquiry and learning related to human consciousness and behavior? Psychologist Lawrence LeShan (1990) described understanding as “an endless process of relating items of study to larger and larger sections of the organism, its history, and social environment” (p. 135). It seemed logical to me to begin my research by understanding others whose bereavement was most like my own. Thus. I began by limiting my study of survival to other mothers who had lost only children. In this chapter and those that follow you will read about these 80 “mothers now childless” and what their life-worlds were like 5 or more years after the death of their only child. You will be challenged, as I was, to then widen the lens of understanding and contrast how these women's experiences are similar to and/or different from those of other bereaved parents. It is vitally important to remember as you read that there is no one way to survive the death of a child, no proven method of processing grief that ensures the best possible accommodation to this traumatic loss. Please read that last sentence again. As many clinicians and researchers realize, it is our society's unrealistic expectations that parents should “accept” and “get over” their child's death that frequently cause secondary injury and anguish to many bereaved parents. The understanding gained about what it means to survive and what it means to remain in a perpetual state of chronic mourning many years after a child's death cannot be reduced to a treatment protocol. Rather, what we gain is greater empathy and multiple examples of the varied pathways traveled and detours sometimes taken by bereaved parents as their grief evolves.

What surprised me most about the 80 women in the “Mothers Now Childless” study, who had been bereaved for an average of 9 years, was that they clearly represented a bereavement continuum, with striking differences about what survival meant to those at opposite ends of that continuum. The overriding commonality among mothers who said they had survived their only child's death (versus those who said they hadn't survived and who were struggling with chronic, debilitating grief) was their ability to find meaning and purpose in life again. Extensive analysis of the study data (presented in chap. 2) highlighted various aspects of this meaning-making process, including the following (not in any specific order):

Sorting through and understanding the unique circumstances and aspects of their child's death.
Acknowledging and resolving any guilt related to the child's death and their inability to prevent it.
Coming to understand the unique impact of role loss on their personal identity.
Defining what being a parent meant and continues to mean to them.
Resolving any dissonance in their spiritual beliefs.
Redefining their beliefs about how the world works.
Consciously deciding to survive their child's death.
Pursuing multiple ways of coping with the pain of grief.
Learning from their evolving bereavement experiences.
Building a new and ongoing relationship with their deceased child.
Reconstructing their personal identity.
Searching for and finding or creating a new purpose for living.
Transcending the self to reconnect with and serve others.
Realizing that helping others brings hope and new meaning to life.

The outcome of this search for meaning and purpose in life was not recovery but resolution and adaptation: a healing of mind, body, and spirit to a degree that permits a new understanding of human existence, reinvestment in life, and discovery of meaningful ways to maintain an eternal connection with the deceased child. The following sections describe the structure and quality of life of the “mothers now childless” who courageously shared with me their happy memories of motherhood and their painful experiences of bereavement.

MOTHERS NOW CHILDLESS: STRUCTURES OF THE LIFE-WORLD

The 80 bereaved mothers studied demonstrated varying degrees of awareness about themselves, others, situations, and circumstances, as well as a broad range of attitudes about life. They shared “stocks of common knowledge” (Schutz, 1966), even as they also experienced and exhibited the “multiple realities” (Schutz, 1966) of their loss and bereavement. The focus or emphasis of each mother varied, along with the quality of her relationships with others, providing individualized pathways within the life-world. In the parlance of phenomenology, four underlying structures illuminate the life-world of these 80 women: stocks of common knowledge; multiple realities; varying levels of awareness and focus; and significant we-relationships.

Stocks of Common Knowledge

In our world of everyday life, we each have access to our own personal reservoir of socially derived knowledge. This knowledge consists of clear, consistent, and unquestionably valid “knowledge about” people, places, and things, knowledge that has been tested and passed on to us by others, and that explains the what, how, and why of social life (Schutz, 1966, p. 120). Individuals have varying degrees of familiarity with such knowledge. And we have the ability to discard knowledge that is no longer useful to us and “proceed from apperception to ever new apperceptions” (Schutz, 1966, p. 121).

There are two components that facilitate making sense of a given situation: the ontological framework of the situation (that which exists outside of and is imposed upon the individual, e.g., the irrevocable death of one's child), and the individual's own biographical reservoir of knowledge (e.g., past experiences with death and bereavement), which the individual, in turn, imposes on the situation in order to define its meaning. Repeatedly, the women studied stated how unprepared they were by prior life experiences to cope with the death of their child. Even in those cases where the child had been ill for years, nothing prepared the mother for what that child's death would mean to her life.

We were never told anything. I mean people live with seizures their whole lives. We knew this was something we might have to deal with the rest of his life, but nobody ever told us it would be fatal. . . . His doctor . . . didn't even believe he was gonna die until he was gone. . . . The autopsy showed he had extra fluid around the brain . . . but there was no reason for any of it—nothing—no answers at all. [Doris, mother of 4-year-old who was diagnosed at age 2 with cerebral palsy]

At the outset of their bereavement, the 10 women interviewed in-depth had found nothing in their reservoir of socially derived knowledge which could help them understand their new reality. Over 85% of the 80 women studied had experienced a significant loss prior to their child's death. The 10 women interviewed did not perceive any of their prior losses as applicable to the overwhelming loss of their child. In addition, the women noted that lack of understanding from others around them often added to their grief and anxiety, and impeded their healing.

It's like they try to deny that he existed. Well, that's the worst hurt that I think a parent has is when people try to shovel it to a back burner. It's because that child existed. Bobby existed. He was a pain in the ass for 18 of 18 years, you know. He was also loving. He was also fun, you know. But he existed. He was here. . . . It had been 18 years of him and I, and 18 years is a long time, and yet it goes by in the blink of an eye. . . . We battled a lot, as a mother and son are prone to do, but he was so precious to me. I couldn't fathom the world without him in it. (Irene, divorced mother of 18-year-old who was a passenger in a single-car accident; his fiancée, the driver, was unhurt]

The experiences of these women and those of many other bereaved parents support Brice's (1987, 1991) conclusion that in order to mourn, it is necessary to mourn to someone else. When this need is frustrated, parents begin to see their grief as pathological and question their own sanity. Lacking understanding listeners in their existing social world, all five of the women I interviewed who represented the “survival” end of the bereavement continuum sought out other bereaved parents and began to build a stock of common knowledge based on their shared experiences. The knowledge shared by the women studied demonstrates how bereaved parents come to understand, in varying degrees of awareness, that:

Life is not always fair and does not always live up to expectations. There are some things in life that parents cannot control no matter how hard they or others try.

I have an incredible fear and have had since the minute Evan died that all I have left of him is in this house, and I have a fear of leaving my house. ‘Cause I can take care of it when I'm here but when I'm gone, who knows what could happen. . . . Sometimes I can just be going to, I don't know, get an adjustment on my neck at the chiropractor or something and have a full-fledged panic attack in the car on the way to town. I don't know if I only feel safe right here, right now, and everything else is a challenge. I don't know. I think it's when I'm in a situation over which I have no control. . . . The one thing I should have been able—it was my job to be Mommy and now—. And I told one woman I lost my son. And she said, I know, my husband got my son in the divorce. And then I learned, well if they're lost, there's a chance you can find ’em. So I don't call it lost anymore. He died; he's gone; there's no— you know, he hasn't been missing for 6 months, and the police could still come to the door. There's no lost to it. It's a loss but he's not lost; I know where he is. It's [feeling out of] control. I guess that is it, the more I realize. [Doris, mother of 4-year-old who was diagnosed at age 2 with cerebral palsy]

Virtually all aspects of these women's lives have changed since the death of their child, including their feelings, beliefs, attitudes, values, assumptions, identities, activities, work, plans, priorities, goals, relationships with others, perceptions of the past, and motivations for the future. Over time their grief has not automatically gotten better; it has gotten different. Their experiences demonstrate that time alone does not heal, nor does sympathy. Rather, bereaved parents must consciously decide to survive their child's death and find their own personally meaningful ways to “live life alive” again.

I'm sure that as the years go on I'll get more and more in touch with all those things about me that aren't all that wonderful, but they don't scare me anymore. I mean, my son died, I can go through anything now. It's okay. I was always afraid to love anybody because they'd leave me . . . and this is only a recent realization—probably in the last 6 months—that yeah, if I love somebody they may die and they may leave, but you know what, I'm gonna be okay anyway. . . . It doesn't scare me so much anymore to be alone, so it doesn't scare me as much to be with somebody either. [Gail, divorced mother of 16-year-old who died in a single-car accident while driving to work in the rain]

Losing a child and the role as that child's parent is not a “typical thing,” but all parents know that this can and sometimes does happen. Today's news coverage often contains reports of children dying traumatic deaths, not just in far-...