The Death Of A Child

The Grief Of The Parents: A Lifetime Journey

Children are not supposed to die...Parents expect to see their children grow and mature. Ultimately, parents expect to die and leave their children behind...This is the natural course of life events, the life cycle continuing as it should. The loss of a child is the loss of innocence, the death of the most vulnerable and dependent. The death of a child signifies the loss of the future, of hopes and dreams, of new strength, and of perfection. - Arnold and Gemma 1994, iv, 9, 39

When a parent dies, you lose your past; when a child dies, you lose your future. - Anonymous

This space is with me all the time it seems. Sometimes the empty space is so real I can almost touch it. I can almost see it. It gets so big sometimes that I can't see anything else. - Arnold and Gemma 1983, 56

A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. But...there is no word for a parent who loses a child, that's how awful the loss is! - Neugeboren 1976, 154

Parental Grief

The theme of parental mourning has been a universal one throughout the centuries. In the literature on bereavement, writers repeat certain themes, thoughts, and reflections; they talk of the powerful and often conflicting emotions involved in "the pain of grief and the spiral of mourning; [they refer to] the heartbreak at the heart of things...grief's contradictions"; they speak of parents devastated by grief (Moffat 1992, xxiii).

It is frequently said that the grief of bereaved parents is the most intense grief known. When a child dies, parents feel that a part of them has died, that a vital and core part of them has been ripped away. Bereaved parents indeed do feel that the death of their child is "the ultimate deprivation" (Arnold and Gemma 1994, 40). The grief caused by their child's death is not only painful but profoundly disorienting-children are not supposed to die. These parents are forced to confront an extremely painful and stressful paradox; they are faced with a situation in which they must deal both with the grief caused by their child's death and with their inherent need to continue to live their own lives as fully as possible. Thus, bereaved parents must deal with the contradictory burden of wanting to be free of this overwhelming pain and yet needing it as a reminder of the child who died.

Bereaved parents continue to be parents of the child who died. They will always feel the empty place in their hearts caused by the child's death; they were, and always will be, the loving father and mother of that child. Yet, these parents have to accept that they will never be able to live their lives with or share their love openly with the child. So they must find ways to hold on to the memories. Many bereaved parents come to learn that "memories are the precious gifts of the heart...[that they need] these memories and whispers, to help create a sense of inner peace, a closeness" (Wisconsin Perspectives Newsletter, Spring 1989, 1).

Parental grief is boundless. It touches every aspect of [a] parent's being...When a baby dies, parents grieve for the rest of their lives. Their grief becomes part of them...As time passes, parents come to appreciate that grief is [their] link to the child, [their] grief keeps [them] connected to the child. - ARNOLD AND GEMMA, IN CORR ET AL. 1996, 50-51

Sociologists and psychologists describe parental grief as complex and multilayered and agree that the death of a child is an incredibly traumatic event leaving parents with overwhelming emotional needs. They also agree that this grief must be acknowledged and felt in its intensity. These experts repeatedly state that dealing with parental grief involves deep pain and ongoing work as the parents attempt to continue their "journey down the lonely road of grief" (Wisconsin Perspectives Newsletter, February 1997, 1).

Grieving parents say that their grief is a lifelong process, a long and painful process..."a process in which [they] try to take and keep some meaning from the loss and life without the [child]" (Arnold and Gemma 1983, 57). After a child's death, parents embark on a long, sad journey that can be very frightening and extremely lonely- a journey that never really ends. The hope and desire that healing will come eventually is an intense and persistent one for grieving parents.

The child who died is considered a gift to the parents and family, and they are forced to give up that gift. Yet, as parents, they also strive to let their child's life, no matter how short, be seen as a gift to others. These parents seek to find ways to continue to love, honor, and value the lives of their children and continue to make the child's presence known and felt in the lives of family and friends. Bereaved parents often try to live their lives more fully and generously because of this painful experience.

To those outside the family, the composition of the family may seem to change when a child dies. A sibling may become an only child; a younger child may become the oldest or the only child; the middle child may no longer have that title; or the parents may never be able to, or perhaps may choose not to, have another child. Nonetheless, the birth order of the child who died is fixed permanently in the minds and hearts of the parents. Nothing can change the fact that this child is considered a part of the family forever, and the void in the family constellation created by the child's death also remains forever.

In a newsletter for bereaved parents, one mother wrote, "It feels like a branch from our family tree has been torn off." Another grieving mother continues, "I felt that way too. A small branch, one whose presence completed us, had been ripped from our family and left a large wound. Without it, we were lopsided and off balance. When subsequent children are born, [they] do not replace the fallen branch, but create a new limb all their own" (Wisconsin Perspectives Newsletter, December 1996, 1).

Common And Individual Characteristics Of Parental Grief

Death is an experience that is common to all mankind, an experience that touches all members of the human family. Death transcends all cultures and beliefs; there is both commonality and individuality in the grief experience. When a loved one dies, each person reacts differently. A child's death, however, is such a wrenching event that all affected by it express sadness and dismay and are painfully shaken. Such a devastating loss exacts an emotional as well as a physical toll on the parents and family.

Bereavement specialists point to the commonalities of parental grief that may include an overwhelming sense of its magnitude, a sense that the pain will last forever, a sense that the grief is etched into one's very being. They explain that it is also important for these parents to express their anger outwardly so that it will not turn inward and possibly become a destructive force in the future. These specialists say that although there are many commonalities in parental grief, individual reactions often vary and that the same person may even experience contradictory reactions. They also say that the two responses experienced most commonly by bereaved parents are a baffling sense of disorientation and a deep conviction that they must never let go of the grief.

But there are also many unique ways that bereaved parents express their grief. These individual parental responses are influenced by many factors including the person's life experiences, coping skills, personality, age, gender, family and cultural background, support and/or belief systems, and even the death or the type of death that occurred.

Parental grief is boundless. It touches every aspect of the parent's being...The range of expression of parental grief is wide...Some parents will express tears and hysteria openly. Others will silence these expressions and grieve inwardly...Despite the volumes of work on grief, the experience of grief seems to defy description... Definitions touch the fringes of grief but do not embrace its totality or reach its core...Grief is a complicated, evolving human process. Grief is a binding experience; its universality binds sufferers together. More is shared than is different. - ARNOLD AND GEMMA, IN CORR ET AL. 1991, 50-52, 55

As part of the grieving process, bereaved parents experience ups and downs and a literal roller coaster of emotions. For these parents, a personal history includes a past with the child and a present and future without the child. For most grieving parents, it is vitally important to verbalize the pain, to talk about what happened, to ask questions, and puzzle aloud, sometimes over and over.

It is the nature of grief that feelings, thoughts, and emotions need to be processed and that those in grief must look into their hearts and souls and try to heal from within. Each does this in his/her own way. "Grieving parents are survivors" (Rando 1986, 176), and each survivor travels this lonely and painful road in a way each maps out. In traveling this road, parents often respond differently, learn to live with their grief separately, and express their sadness uniquely. Grieving parents can and often do feel alone, disconnected, and alienated. They need to know that there are many ways to grieve; there is no timetable for grief's duration; there are no rules, boundaries, or protocols for grieving.

Moreover, those who seek to comfort grieving parents need to recognize and understand the complexities of the parents' emotions and should avoid relying on preconceived ideas about the way a couple is supposed to grieve if their child dies. Reactions of grieving parents may seem overly intense, self-absorbing, contradictory, or even puzzling. For bereaved parents, the death of a child is such an overwhelming event that their responses may often be baffling not only to others but to themselves as well.

The sorrow for the dead is the only sorrow from which we refuse to be divorced. Every other wound we seek to heal, every other affliction to forget; but this wound we consider it a duty to keep open; this affliction we cherish and brood over in solitude. - WASHINGTON IRVING, THE SKETCH BOOK , IN MOFFAT 1992, 270

Parental Grief And A SIDS Death

The impact of a Sudden Infant Death Syndrome (SIDS) death presents unique grieving factors and raises painful psychological issues for the parents and family as well as those who love, care for, and counsel them. SIDS parents must deal with a baby's death that is unexpected and unexplained, a death that cannot be predicted or prevented, an infant death so sudden that it leaves no time for preparation or goodbyes, and no period of anticipatory grief. In many cases, parents of SIDS babies are very young and are confronted with grief for the first time.

SIDS often occurs at home, forcing parents and siblings or other children to witness a terrible tragedy and possibly scenes of intense confusion. In some cases, the parents themselves are the ones who find the child dead and they must always live with that memory. In other cases, the parents may feel overwhelming guilt or anger if the death occurred while the child was in daycare. They may feel that the baby might not have died if they had been caring for it. "All too frequently, a SIDS loss is not socially validated in the same way other deaths are. Others often fail to recognize that, despite the brevity of the child's life, the family's attachment to that child is strong and deep and has been present in various ways since the knowledge of conception" (Rando 1986,167).

SIDS parents must take a journey that "involves a trek through grief-a strange and hostile territory that no one would ever pass through if given the choice" (Horchler and Morris 1994, 17). SIDS parents often retain strong feelings of guilt and sometimes a sense of responsibility for what happened even though they've been told there was nothing they could have done to prevent the death. Sometimes, parents are the victims of undeserved suspicion from law enforcement personnel, even family members, neighbors, or friends. In the most difficult situations, the baby's death may cause parents to be subjected to grueling investigations and hostile questions; they may even face accusations of child abuse.

Probably the most stressful and anxiety-provoking act in human existence is the separation of a woman from her newborn infant. The response to this, which humans share with most of the animal kingdom, is an overwhelming combination of panic, rage, and distress. - RUSKIN, IN HORCHLER AND MORRIS 1994,16

SIDS parents, relatives, daycare providers, health care professionals, and other adults feel helpless in trying to explain the unexplainable to other young children who may have been present at the time of the baby's death. It is especially difficult for children to understand why a baby died when it didn't appear to be sick. Also, in some cases parents are required to explain SIDS to adults who are misinformed or know nothing about the syndrome.

Any infant or early childhood death forces adults to think about their own vulnerability, but a SIDS death also brings with it total mystery, an absence of answers, and a frightening loss of control. The chaos surrounding a SIDS death leaves most parents feeling that nothing in life is predictable; a SIDS death throws everything off balance.

As is the case in most traumatic experiences, SIDS parents are likely to continually replay the events surrounding the death over and over in their minds and in their conversations. Whether the parents put a seemingly healthy baby down for a nap or for the night or took the child to the daycare provider, they assumed their child was well and in a protected environment. They felt secure; their family and their world were in order. Then suddenly, everything has been turned upside down. Even though there may be attempts to reassure the parents that the baby didn't appear to suffer, frequently they are not convinced. They repeatedly ask, "How can a perfectly healthy baby die?" Often these parents are told that SIDS doesn't carry a high hereditary risk; yet fears about having subsequent children haunt them.

[The grief SIDS parents feel is like a]...continuous, crashing waterfall of pain...SIDS is a forced separation that will last forever. In the beginning, survivors are so shocked that their bodies and minds cannot even begin to comprehend all that has been lost...Shock and disbelief overtake most survivors so they can only vaguely feel their own empty arms and the rage that will eventually come full force. ...SIDS parents attempt to transcend the awfulness of [the baby's] death by choosing to celebrate the dead infant's life while not denying the physical finality of the death...[After a SIDS death, parents attempt] to travel the long road of grief to a place of rest and hope...SIDS parents must [try to] actively seek peace and joy in life-even in the face of a grief that will never end... - HORCHLER AND MORRIS 1994, 2, 16, 17, 248

SIDS parents also are very often plagued by "if only's" that they are never able to resolve. They mentally replay such thoughts as: "If only I hadn't put the child down for a nap when I did." "If only I had checked on the baby sooner." "If only I had not returned to work so soon." "If only I had taken the baby to the doctor with that slight cold."

SIDS parents also need to know the value and importance of obtaining reliable information. They need to have access to professional support; and they need to be aware of the great benefits other parents have gained from attending support groups and sharing their experience or by expressing their thoughts and feelings in writing.

Moreover, bereaved SIDS parents often find that health care professionals are as perplexed as they are and cannot provide them with any explanation for the death. Although most health professionals know about SIDS, not all can provide parents with the information they so anxiously seek. They are unable to provide answers to questions such as: "Did my baby suffer?" "What are the possible causes of SIDS?" "What can I do to prevent another child from dying of SIDS?" "Are there symptoms I should have known about that could have prevented the death?"

In the case of some SIDS deaths, the autopsy findings may still leave unanswered questions, or the child's death may be attributed to causes that are problematic for the parents. Some families are subjected to agonizing doubts and delays from the legal system about the exact cause of death. The absence of standardized procedures for determining the cause of unexpected infant deaths brings added pain and frustration to parents already in the midst of a harrowing nightmare. Thus, SIDS parents are often denied the sense of closure that comes from knowing the exact cause of their baby's death.

A single SIDS death can have a ripple effect on as many as 100 people who came in contact with the baby or the family. "The expanded circle of concern" (Corr et al. 1991, 43) can include parents, extended family, neighbors, coworkers, child care providers, health care and emergency personnel, clergy, funeral directors, and other care providers.

SIDS parents and family members need to be around people who will offer them support in a nonjudgmental way; they need to know that some things in their lives are permanent and there are certain people on whom they can truly depend. Other family members, friends, or professionals can provide this sense of dependability and assurance by allowing parents both permission and ways to express their grief and talk about their confusion. SIDS parents need to talk and they need someone to listen-really listen-even if they tell their story, express their doubts and fears, and ask the same questions repeatedly. What SIDS and other bereaved parents are really saying is, "Let me tell you about my pain; let me talk about my child with you; please do call my child by name; please do not let my child be forgotten."

Friends and family members should try to do all they can to show their concern and help the parents in keeping alive memories of their baby. For most SIDS parents, it is also reassuring for others to try to mention special things they noticed about the baby and to remember the child's birthday or the anniversary of the death. By extending these personal and sensitive gestures, loving and concerned relatives, friends, and caregivers can become a source of reassurance and comfort for the grieving parents.

Some SIDS babies are so young when they die that family members and friends never had a chance to welcome them. They may have missed sharing the parents' excitement over the birth and affirming the child's existence. Many individuals do not understand the depth of parental attachment to a very young child. Bereaved SIDS parents should not be made to feel that others don't want to hear them, that others won't permit them to openly grieve. The parents of SIDS babies want their child's short life to matter not only to them, but to their families and friends, to the others in their "circle of concern," to the world.

The dynamics of a SIDS loss [mean]...there is no chance to say goodbye to the infant or to absorb the reality of the loss gradually over time; the unexpected loss so overwhelms people that it reduces their functioning and compromises their recovery...The physical and emotional shock of the infant's death undermines the [parents'] capacity for regaining a feeling of security; the SIDS loss evokes particularly problematic grief reactions, such as the abrupt severing of the mother and father infant bond. - RANDO 1986, 166

Fathers - The Forgotten Grievers

The death of a child is probably the most traumatic and devastating experience a couple can face. Although both mothers and fathers grieve deeply when such a tragedy occurs, they grieve differently, and it is most important that each partner give the other permission to grieve as he/she needs. This may be the greatest gift each can give the other.

Parental grief is strongly influenced by the nature of the bond between child and parent. Bereavement specialists actually speak of "incongruent grieving" patterns in mothers and fathers and of differences in the timing and intensity of the parental bond for mothers and fathers.

For the mother, the bond is usually more immediate and demonstrable, more intense at the beginning of life, more emotionally and physically intimate. The mother's bond with the baby is usually tightly forged from the moment of conception and continues through the pregnancy, the birth, and the nursing process. The maternal bond involves the present and the baby's immediate needs, while the father's bond with the baby more often concerns the future and dreams and expectations for the child. Today, however, many fathers are forging earlier and more intense prenatal bonds with their babies. Fathers also are often present in the delivery room for the birth. Some fathers become direct caregivers of the newborn, developing early and close bonds with their infants. Yet, still in many cases, "the father's emotional investment in parenting tends to occur later and less intensely than the mother's. This has implications for the way parents grieve" (Cordell and Thomas 1990, 75).

When is it my turn to cry? I'm not sure society or my upbringing will allow me a time to really cry, unafraid of the reaction and repercussion that might follow. I must be strong, I must support my wife because I am a man. I must be the cornerstone of our family because society says so, my family says so, and, until I can reverse my learned nature, I say so. - A FATHER, IN DEFRAIN ET AL. 1991, 112

In spite of the trend towards earlier bonding between fathers and babies, the influence of cultural expectations about men and grief persists and is powerful. Typically, the societal view of parental loss is not the same for the father as the mother. Most of the literature on parental bereavement still tends to focus on the mother's grief. Often, men are not acknowledged as experiencing grief; or more importantly, men are not taught that it's necessary to grieve and are discouraged from demonstrating signs of grief openly. Bereaved fathers frequently feel that they are the forgotten mourners and are often referred to as "second class grievers" (Horchler and Morris 1994, 72).

Fathers are expected to be strong for their partners, to be the "rock" in the family. All too often fathers are considered to be the ones who should attend to the practical but not the emotional aspects surrounding the death; they are expected to be the ones who should not let emotions show or tears fall outwardly, the ones who will not and should not fall apart. Men are often asked how their wives are doing, but not asked how they are doing.

Such expectations place an unmanageable burden on men and deprive them of their rightful and urgent need to grieve. This need will surface eventually if it is not expressed. It is not unusual for grieving fathers to feel overwhelmed, ignored, isolated, and abandoned as they try to continue to be caregivers and breadwinners for their families while their hearts are breaking. "Fathers' feelings [often] stay hidden under layers of responsibility and grim determination" (Staudacher 1991, 124).

Bereaved fathers often say that such strong emotions are very difficult to contain after their child's death. Fathers often fear that they will erupt like volcanoes if they allow themselves to release these feelings and so, too often, fathers try to bury their pain with the child who died.

It is most important that a father's grief be verbalized and understood by his partner, other family members, professionals, coworkers, friends, and by anyone who will listen. Fathers need to try to free themselves of stereotypes and societal expectations about men and grief; they must be able to tell others that their grief is all they have from their child's brief life. Fathers repeatedly say that for their own peace of mind, they (and those who care about them) need to move away from this mind set and allow them to grieve as they are entitled.

In too many instances, fathers' responses to infant loss tend to coincide with how they believe they should act as men, rather than how they need to act to confront and resolve [their own] grief. - CORDELL AND THOMAS 1990, 75

The Impact Of Grief In Special Parenting Situations

The tragedy of a child's death brings profound pain to all affected, and it presents incredibly difficult and unusual problems for grieving parents. For some parents, the effects of such a complicated and devastating tragedy can be further compounded when the death occurs in what are already trying family situations. There are some parents for whom there is no established "circle of concern"; there are some parents for whom there is no safety net; there are some parenting situations that are outside the domain of the typical support network; and there are some parents who choose to reject this network for their own reasons.

A child's death may present unique dilemmas for:

Single parents who are often self-supporting and may be more isolated and ignored
Unmarried parents who may already have experienced the disfavor of family and others
Teenage parents whose grief is often not validated because of their situation or their youth
Parents in stressful financial situations whose struggle to satisfy their most basic needs may cause them to stifle or ignore their need to grieve and for whom loss is a constantly repeated theme
Divorced parents and parents in blended or nontraditional families who may require unique responses or resources
Step-parents whose grief may not be understood or appreciated
Adoptive parents who may be expected to grieve less than birth parents because their "bond" with the child is perceived to be less intense n Foster parents who are not thought to have the same "right" to grieve as birth parents
Parents who experience the death of the only child they may ever have and who also grieve for the loss of their parenting role
Parents losing a child who is one in a multiple birth and who are faced with the double task of saying "goodbye to the baby who has died and yet...still loving and caring for the baby who is living" (Hosford 1994, 1)
Parents who are removed or estranged from typical and traditional support systems
Parents whose language, cultural traditions, and/or beliefs are largely unrecognized or misunderstood by the society
Parents in homeless shelters, prisons, jails, or other institutions whose needs require unique consideration and creative responses
Parents with substance abuse problems whose child may have faced medical and/or developmental problems and who often must deal with guilt and other complex and overwhelming problems when a child dies.

When a child dies, inevitably there will be additional factors that will impinge on the parent's grief experience. Some of these will be negative... [and] sometimes, these factors will be positive. - RANDO 1986, 31

All of the grieving parents identified above as well as parents in many other situations may find their grief unusually complicated. They may discover the responses of others to be less concerned and may find support networks less readily available. These parents may not receive the same validation as parents in traditional nuclear families, and the needs and wishes of parents in these unique and complex situations may sometimes be ignored or misunderstood. Parental experiences, coping strategies, and cultural differences vary widely. At the same time, these parents may not have the same access to, need for, or reliance on peer or other support groups. Obtaining transportation or babysitters so they can attend meetings may be an impossibility for some parents. Still others may reject such support networks and depend solely on family, neighborhood, or church networks as the best support system for them. Parental bereavement support groups are not for everyone.

All of the parents exemplified here find themselves in special situations affecting their personal grief experience, how others react to their grief, and the type of support and/or intervention needed to help them resolve their grief. However, these parents are the fathers and mothers of the child who died; they are the ones who have nurtured, cared for, and loved that child. The sense of absolute emptiness, the lack of wholeness, and the feeling of diminishment after the death of a child are felt by all parents, regardless of marital status; age; language; financial or social circumstances; biological relation to the child; or cultural, racial, or religious background. Despite the differences among these groups in their responses and needs, all have one major need in common-their grief is intense and must be acknowledged.

There is no relationship like that of parent and child. It is unique and special...The bond between parent and child is so powerful that its strength endures time, distance, and strife. No loss is as significant as the loss of a child...On the death of a child, a parent feels less than whole. - ARNOLD AND GEMMA 1994, 25-27

From One Grieving Parent To Another

You will always grieve to some extent for your lost child. You will always remember your baby and wish beyond wishes that you could smell her smell or hold his weight in your arms. But as time goes on, this wishing will no longer deplete you of the will to live your own life. - HORCHLER AND MORRIS 1994, 158

Parental grief is overwhelming; there is nothing that can prepare a parent for its enormity or devastation; parental grief never ends but only changes in intensity and manner of expression; parental grief affects the head, the heart, and the spirit.
For parents, the death of a child means coming to terms with untold emptiness and deep emotional hurt. Immediately after the death, some parents may even find it impossible to express grief at all as many experience a period of shock and numbness.
All newly bereaved parents must find ways to get through, not over, their grief-to go on with their lives. Each is forced to continue life's journey in an individual manner.
Parental bereavement often brings with it a sense of despair, a sense that life is not worth living, a sense of disarray and of utter and complete confusion. At times, the parent's pain may seem so severe and his/her energy and desire to live so lacking that there is uncertainty about survival. Some bereaved parents feel that it is not right for them to live when their child has died. Others feel that they have failed at parenting and somehow they should have found a way to keep the child from dying.
Grieving parents often have to adopt what one parent called a "new world view" (Wisconsin Perspectives Newsletter, December 1996, 7). Each parent must almost become a new and different person.
Grieving parents should learn to be compassionate, gentle, and patient with themselves and each other. Grief is an emotionally devastating experience; grief is work and demands much patience, understanding, effort, and energy.
Parental grief can and often does involve a vast array of conflicting emotions and responses including shock and numbness, intense sadness and pain, depression, and often feelings of total confusion and disorganization. Sometimes, parents may not even seem sure of who they are and may feel as if they have lost an integral part of their very being. At other times, parents may feel that what happened was a myth or an illusion or that they were having a nightmare.
Typical parental reactions to a child's death often involve emotional and physical symptoms such as inability to sleep or a desire to sleep all the time, mood swings, exhaustion, extreme anxiety, headaches, or inability to concentrate. Grieving parents experience emotional and physical peaks and valleys. They may think life finally seems on an even keel and that they are learning to cope when periods of intense sadness overwhelm them, perhaps with even more force. (Experiencing any or all of these reactions does not mean permanent loss of control or inability to recover and are usually part of the grief process.)
The death of a child can and often does affect not only personal health but sometimes the marriage, the entire family unit, other relationships, and even plans and goals for the future.
Grieving parents need to know how important it is to express their pain to someone who will understand and acknowledge what they are feeling and saying. They should be honest with themselves and others about how they feel. These parents should allow themselves to cry, be angry, and complain. They need to admit they are overwhelmed, distracted, and unable to focus or concentrate. They may even need to admit to themselves and others that they might show physical and/or emotional symptoms that they don't want or can't even understand.

When are you ready to live again? There is no list of events or anniversaries to check off. In fact, you are likely to begin living again before you realize you are doing it. You may catch yourself laughing. You may pick up a book for recreational reading again. You may start playing lighter, happier music. When you do make these steps toward living again, you are likely to feel guilty at first. 'What right have I, you may ask yourself, to be happy when my child is dead?' And yet something inside feels as though you are being nudged in this positive direction. You may even have the sense that this nudge is from your child, or at least a feeling that your child approves of it. - HORCHLER AND MORRIS 1994, 158

Each bereaved parent must be allowed to mourn in his/her own way and time frame. Each person's grief is unique, even that of family members facing the same loss. Bereaved parents shouldn't expect or try to follow a specific or prescribed pattern for grief or worry if they seem out of synchrony with their partner or other grieving parents.
Bereaved parents need to know that others may minimize or misunderstand their grief. Many don't understand the power, depth, intensity, or duration of parental grief, especially after the death of a very young child. In some instances, bereaved parents are even ignored because some individuals are not able to deal with the tragedy. They find the thought of a child's death too hard, too Inexplicable, or too threatening. Many simply don't know what to say or do and so don't say or do anything.
Most grieving parents experience great pain and distress deciding what to do with their child's belongings. Parents need to under-stand that this task will be most difficult and that different parents make different decisions. They should be encouraged to hold onto any experiences, memories, or mementoes they have of the child and find ways to keep and treasure them. These memories and mementoes-their legacy from the short time they shared with this very special person- will be affirming and restorative in the future.
Most grieving parents also experience considerable pain on special occasions, such as birthdays, holidays, or the anniversary of the child's death. Parents will need to find ways to cope with these events and should do what feels right for them, not what others think they should do.
Many bereaved parents find solace in their religion. Not only will these religious beliefs significantly alter the meaning that the parents give to life, death, and life after death, they will also affect their grief response. Grieving parents with a religious background should be encouraged to express these beliefs if this is helpful. Some grieving parents without a formal or organized religious background may maintain a spirituality or a personal faith that is also a part of their lives and that gives them comfort. They, too, should be encouraged to express these feelings. Seeking spiritual comfort in a time of grief does not mean repressing the grief. (It is important, however, that others offering support to grieving parents should not try to dismiss or diminish their grief by using religious or other platitudes or by forcing religion on parents who are uncomfortable with a particular belief system.)

Bereaved parents will recover and reach a place of rest and hope... [They] will never forget [their child], but rather will find ways to keep [the child] a cherished part of [their] inner selves forever. - HORCHLER AND MORRIS 1994, XIX

Many grieving parents also find comfort in rituals. Funerals or memorial services have served many parents as beautiful and meaningful ways of saying goodbye, providing a sense of closure after the child's death. For others, sending announcement cards about the baby's death, writing poems, keeping journals or writing down personal reflections or prayers, or volunteering with a parental bereavement group become ways to remember and honor the child who died.
Grief is the natural response to any loss. Parents need to be reminded how important it is to process all feelings, thoughts, and emotions in resolving grief. Bereaved parents must look within and be prepared to deal with the past and present. They need to talk about their loss, and the loss must be acknowledged by others. They need to tell others about what happened to their child; they need to talk out and through their thoughts and feelings from the heart, not just from the head. Healing for bereaved parents can begin to occur by acknowledging and sharing their grief.
Probably the most important step for parents in their grief journey is to allow themselves to heal. Parents need to come to understand that healing doesn't mean forgetting. They need to be good to themselves and absolve themselves from guilt. They should not be afraid to let grief loosen its grip on them when the time comes. Easing away from intense grief may sometimes cause pain, fear, and guilt for a while, but eventually, it usually allows parents to come to a new and more peaceful place in their journey. Allowing grief's place to become a lesser one does not mean abandoning the child who died.

In the end parents must heal themselves. It was their baby; it is their loss; it is their grief. They need to gain closure, to experience release, to look to their new future. - NICHOLS, IN RANDO 1986, 156

Some Thoughts From Grieving Parents

Bereaved parents face a devastating and difficult journey; expressing grief is the normal response to such a loss; unexpressed grief can be devastating and debilitating.
An intense parental attachment has been formed between parent and child no matter how young the child is at the time of death. Others need to try and understand the intensity of this attachment, the depth of the parents' grief, and the magnitude of their sorrow.
Grief is exhausting and demanding work. Grief is also a process, not a single timed event. Bereaved parents appear to exhibit different reactions at varying points in their grief and to grieve differently even when they belong to the same family.
There are no easy ways to deal with grief, there is no one correct way to grieve, and no set time frame for grieving parents.
Caregivers need to know there are no exact or right words or expressions when comforting grieving parents. Neither should caregivers try to take away the parents' grief. Most of all, they should try to speak from the heart and show their care and concern. Sometimes it may seem that they say the wrong thing.
The caregiver should try again, using different words, or admit confusion about what to say. The pain must be walked through by the bereaved parent and also by those who seek to help them.

There is a need to talk, without trying to give reasons. No reason is going to be acceptable when you hurt so much. A hug, the touch of a hand, expressions of concern, a willing listener were and still are the things that have helped the most...The people who [were] the greatest help... [were] not judgmental. It's most helpful when people understand that [what is needed] is to talk about it and that this is part of the grief process. - DEFRAIN ET AL. 1991, 158, 163

Bereaved parents need to find ways to keep the memories alive and also find ways to create memories. Memories are all they have left from the child who died. Bereaved parents often need to establish unique rituals to memorialize the child and in some cases, others may find this process puzzling.Grieving parents need to be allowed to set the tone and direct others about how to help them in their grief. Parents need validation as they attempt the process of healing.
Friends and caregivers should try to help grieving parents express their grief. They should try to be a safe place for them-a place where they can be themselves, where they can be confused, where they can express their pain, sadness, and even anger. Those who care should grieve and mourn with the parents; they must also be willing to listen.
In most cases, bereaved parents don't want to be avoided, but they may be hesitant to let others know they are needed. Usually, they are most grateful for the kind expressions and gestures of love and support.
Bereaved parents need to know that the support of family, friends, and others will continue after the commotion and busy days immediately following the death and funeral. Their grief continues forever. One bereaved father said, "the period following the funeral is perhaps the most difficult time for the bereaved...[This is the time that parents must] absorb the magnitude of their loss and begin to integrate it into the rest of their lives" (Bramblett 1991, 39). Bereaved parents need to have extended remembrances of their child for a long while after the event, especially on anniversaries, birthdays, holidays, or special events, such as Mother's Day or Father's Day.
Bereaved parents need to know that their child will be remembered, not just by them but also by family and friends. They need to have the child acknowledged and referred to by name. They want that child's life to matter. They do not want to forget and they don't want others to forget. One bereaved parent said, "The mention of my child's name may bring tears to my eyes, but it also brings music to my ears" (Anonymous).

Grieving keeps memories alive for bereaved parents and retains a place in their families and in their hearts for the dead child...[it is] a continuous process with peaks, valleys, and plateaus; it is a complex process that varies with each individual. - Arnold and Gemma 1994, 1994, 28

When Trying To Comfort Grieving Parents

DO:

Acknowledge the child's death by telling the parents of your sadness for them and by expressing love and support; try to provide comfort.
Visit and talk with the family about the child who died; ask to see pictures or mementoes the family may have.
Extend gestures of concern such as bringing flowers or writing a personal note expressing your feelings; let the parents know of your sadness for them.
Attend the child's funeral or memorial service.
Remember anniversaries and special days.
Donate to some specific memorial in honor of the child. Offer to go with the parent(s) to the cemetery in the days and weeks after the funeral, or find other special ways to extend personal and sensitive gestures of concern.
Make practical and specific suggestions, such as offering to stop by at a convenient time, bringing a meal, purchasing a comforting book, offering to take the other children for a special outing, or treating the mother or father to something special.
Respect the dynamics of each person's grief. The often-visible expressions of pain and confusion shown by grieving parents are normal. Grief is an ongoing and demanding process.

DO NOT:

Avoid the parents or the grief. Refrain from talking about the child who died or referring to the child by name.
Impose your views or feelings on the parents or set limits for them about what is right or appropriate behavior.
Wait for the parents to ask for help or tell you what they need.
Tell them you know just how they feel.
Be afraid to let the parents cry or to cry with them.

How Grieving Parents Attempt To Cope With The Loss And Move On

Bereaved fathers and mothers try to cope with their grief by:
Admitting to themselves and others that their grief is overwhelming, unpredictable, painful, draining, and exhausting-that their grief should not be diminished or ignored.
Allowing themselves to be angry and acknowledging that they are vulnerable, helpless, and feeling disoriented.
Trying to understand that to grieve is to heal and that integrating grief into their lives is a necessity.
Acknowledging the need and desire to talk about the child who died as well as the moments and events that will be missed and never experienced with the child.
Maintaining a belief in the significance of their child's life, no matter how short.
Creating memorial services and other rituals as ways to commemorate the child's life.
Deriving support from religious beliefs, a sense of spirituality, or a personal faith.
Expressing feelings in journals, poetry, prayers, or other reflective writings or in art, music, or other creative activities.
Trying to be patient and forgiving with themselves and others and refraining from making hasty decisions.

When you accept what has happened, you aren't acknowledging that it is okay but rather, that you know you must find a way to keep growing and living-even if you don't feel like it...[Don't let] grief be your constant companion...Realize that your grief is born out of unconditional love for your child and rejoice in that love which will never end... Embracing life again is not a sign that you have stopped missing your baby, but an example of a love that is eternal. - WISCONSIN PERSPECTIVES NEWSLETTER, SPRING 1989, 3

Counting on, confiding in, and trusting those who care, listen, and hear, those who will walk with them, and not be critical of them, those who will try to understand their emotional and physical limitations.
Increasing their physical activity and maintaining a healthful diet.
Volunteering their services to organizations concerned with support for bereaved parents.
Obtaining help from traditional support systems, such as family, friends, professionals or church groups, undergoing professional counseling, joining a parent support group, or acquiring information on the type of death that occurred as well as about their own grief.**
Reassuring themselves and others that they were and still are loving parents.
Letting go of fear and guilt when the time seems right and the grief seems less.
Accepting that they are allowed to feel pleasure and continue their lives, knowing their love for their child transcends death.

** Grief support groups are often available through area hospitals, churches, or local chapters of national organizations, such as State SIDS or SIDS Alliance programs or through support organizations, such as SHARE, Resolve Thru Sharing, Compassionate Friends, and others.
When children die, the bond doesn't break... [But] the parents face two mutually exclusive facts. The child is gone and not coming back, and the bond is...as powerful a bonding as people have in their abilities... [Bereaved parents attempt] to let go, not of the child, but of the pain. - FINKBEINER 1996, 244, 249

Conclusion

Children are valuable and precious symbols of what lies ahead. Children are considered the hope of the future. When a child dies, that hope is lost.

Two universals stand out when reflecting on parental grief-a child's death is disorienting, and letting go of a child is impossible. Parents never forget a child who dies. The bond they formed with their child extends beyond death. As survivors, bereaved parents try to adapt to the new existence forced on them. They try to pass on to others the love and other special gifts they received from their child; they try to make the child who died a part of their lives forever; they constantly try to "honor the child who should have lived" (Finkbeiner 1996, xiv). Bereaved parents encourage others who care for and about them to do the same. They ask others to help them, to be for them "a lifeline of support, a lifeline to survival [and to understand]...the crying of their souls" (Donnelly 1982, ix).

Bereaved parents say, "Our children are in our blood; the bond with them doesn't seem to break [and they attempt to] find subtle and apparently unconscious ways of preserving that bond" (Finkbeiner 1996, xiii, xiv). Bereaved parents need to do this to deal with what seems like an endless roadblock of loss and sadness. One bereaved parent expressed it by saying that the wound heals, but the scar remains forever.

What has happened to these parents has changed their lives; they will never see life the same way; they will never be the same people. As they attempt to move forward, bereaved parents realize they are survivors and have been strong enough to endure what is probably life's harshest blow. By addressing their grief and coping with it, they struggle to continue this journey while making this devastating loss part of their own personal history, a part of their life's story, a part of their very being.

Bereaved parents learn to live with the memories, the lost hopes, the shattered dreams. [They] never 'get over' the death, but [they] do recover, adjust and learn to live with [the] pain. - DONNELLY 1982, X

In writing about bereavement, Rollo May, the religious psychologist said that the only way out is ahead and the choice is whether to cringe from it or to affirm it. To be able to continue this lifetime journey and to make it manageable and productive, bereaved parents must move ahead and affirm this loss while also affirming their own lives.

Eventually, time will cease to stand still for these parents. Painful and terrible moments will still occur-striking, poignant, but in some ways comforting, reminders of the child who died. There will also be regrets for experiences that were never shared. But at some unknown and even unexpected point, these parents will come to realize that there can be good moments, even happy and beautiful moments, and it will not seem impossible or wrong to smile or laugh, but it will seem right and beautiful and a fitting way to honor and remember the child who died. One day, bereaved parents may come to be "surprised by joy" (Moffat 1992, xxvii).

But in time... nature takes care of it; the waves of pain lose intensity a little and come less frequently. Then friends and relatives say the parents are getting over it, and that time heals all wounds. The parents themselves say that as the pain lessens, they begin to have energy for people and things outside themselves...This is a decision parents say [they] must make to live as well as they can in [their] new world... They can come to be happy, but never as happy. Their perspective on this and everything has changed. Their child's death is the reason for this and is a measure of the depth and breadth of the bond between parent and child. - FINKBEINER 1996,12, 20, 22, 23

References

Arnold, J.H. and P.B. Gemma. A Child Dies: A Portrait of Family Grief. Rockville, MD: Aspen Systems Corporation. 1983.
Arnold, J.H. and P.B. Gemma. A Child Dies: A Portrait of Family Grief. Philadelphia, PA: The Charles Press Publishers. Second Edition. 1994.
Bramblett, J. When Good-bye Is Forever: Learning to Live Again After the Loss of a Child. New York: Ballantine Books. 1991.
Cordell, A.S. and N. Thomas. "Fathers and Grieving: Coping with Infant Death. Journal of Perinatology, Vol. X, No. 1, March 1990.
Corr, C.A., H. Fuller, C.A. Barnickol, and D. M. Corr (Eds.). Sudden Infant Death Syndrome: Who Can Help and How. New York: Springer Publishing Company, Inc. 1991.
DeFrain, J., L. Ernst, D. Jakub, and J. Taylor. Sudden Infant Death Syndrome: Enduring the Loss. Lexington, MA: Lexington Books. 1991.
Donnelly, K. F. Recovering From the Loss of a Child. New York: Macmillan Publishing Co. 1982.
Finkbeiner, A. K. After the Death of a Child: Living with Loss Through the Years. New York: Simon and Shuster Inc. 1996.
Horchler J. N. and R.R. Morris. The SIDS Survival Guide: Information and Comfort for Grieving Family and Friends and Professionals Who Seek to Help Them. Hyattsville, MD: SIDS Educational Services. 1994.
Hosford, C. Fact Sheet: When a Twin Dies. Baltimore, MD: Maryland SIDS Information and Counseling Program. 1994.
Moffat, M.J. (Ed.) In the Midst of Winter: Selections from the Literature of Mourning. New York: Random House. 1992.
Neugeboren, J. An Orphan's Tale. New York: Holt, Rinehart & Winston. 1976.
Rando, T.A. (Ed.) Parental Loss of a Child. Champaign, IL: Research Press Company. 1986.
Schiff, H.S. The Bereaved Parent. New York: Penguin Books. 1977.
Staudacher.C. Men and Grief: A Guide for Men Surviving the Death of a Loved One, A Resource for Caregivers and Mental Health Professionals. Oak-land, CA: New Harbinger Publications, Inc. 1991.
Wisconsin Perspectives Newsletter. Milwaukee, WI: Wisconsin Sudden Infant Death Center, Spring 1989.
Wisconsin Perspectives Newsletter. Milwaukee, WI: Wisconsin Sudden Infant Death Center, December 1996.
Wisconsin Perspectives Newsletter. Milwaukee, WI: Wisconsin Sudden Infant Death Center, February 1997.

Acknowledgments

Staff of the National SIDS Resource Center (NSRC) collaborated in the preparation of this publication. We have tried to express our own thoughts and ideas, but most especially, we have drawn from our experiences with bereaved parents, whether in person, by phone, or from their own writings and reflections. We have learned from these parents, and we would like to share what we have learned with others.
We hope that this publication will help our readers better understand the magnitude of parental grief and its aftermath. We also hope that we may help others hear what grieving parents mean when they speak about "the crying of their souls."

We are deeply grateful to the many parents and caregivers who have been willing to share such sensitive and personal reflections with others. We have freely quoted from them and acknowledged each source whenever it was identified. A few citations remain anonymous because we were not able to identify their source.

NSRC staff also wish to thank the following two individuals who graciously offered their comments and suggestions and from whose publications we have quoted liberally:

Joan H. Arnold, PhD, RN
Associate Professor, College of New Rochelle, School of Nursing; Consultant to the New York City Information and Counseling Program for Sudden Infant Death Syndrome; and coauthor with Penelope B. Gemma of A Child Dies: A Portrait of Family Grief.

Joani N. Horchler
SIDS Parent; Executive Director of SIDS Educational Services Inc., Hyattsville, MD; and coauthor with Robin R. Morris of The SIDS Survival Guide: Information and Comfort for Grieving Family & Friends & Professionals Who Seek to Help Them.
Source: National SIDS Resource Center

September 1997

Page last modified or reviewed on January 23, 2014