Welcome to Loss of an Infant/Child bb--please read before posting!!

[Phud]

The Loss of an Infant/Child bulletin board was established to provide a place of comfort and support for parents who have suffered the death of a child (pre-term infant or older). Participants on the bulletin board provide on-going support of each other. All who have suffered from the death of an infant/child are welcome and are encouraged to share their experiences when they are ready.

There is no time limit on grief, and thus participants represent various stages in the grief/healing process. Those who participate on the loss of an infant/child bulletin board are a varied group in demographics as well as family and fertility statuses. Posters may have previous or subsequent children, may be undergoing fertility treatment, trying to conceive naturally or in the adoption process, or may be at a point where having subsequent children is not feasible. When posting, please make the proper indications in consideration of other participants (e.g., living children mentioned, trying to conceive mentioned, pregnancy mentioned, etc.). This applies to ALL posters.

We work very hard to make this a place of comfort. It is a true support group and as such, priority is reserved for those who have suffered the death of an infant/child. What is posted on this board should stay on this board. Participants' posts are assumed to be personal, and not intended for sharing outside the board. Nevertheless, please keep in mind that this is a public forum and your information will be read by others who are not active participants on this board.

Because of the emotional nature of the death of an infant or child, lurkers and those who have not suffered the death of an infant/child should consider the nature of their posts and keep in mind the sensitivity levels of participants on the bb will be high. Please consider what you say to the person you are posting to as many things said in name of comfort are not necessarily comforting to those who read them. For example, avoid trite phrases and comments such as “I know how you feel” because if you have not had the experience that person has, you will not know. Avoid comparisons of the grief that comes with the death of one’s child with the grief of losing a pet or a parent or another relative…they are not the same. Take comfort in the fact that grief is the very natural reaction to death. The pain a person experiences with grief is what is meant to occur. Do not belittle the experience or try to “cure” it…you can’t. Also, it is a very natural experience for someone who has suffered the tremendous loss that comes with the death of his/her child to question his/her faith and/or religious background. Do not feel that you have to defend your faith or your religion. Remember…this is not about you. Be patient. Be kind. Be compassionate. Be selfless.

Lurkers who have questions regarding the loss of an infant or child are asked to take time and read previous posts first to see if their question has already been asked and answered.

Participants of the infant/child loss bb give much of themselves on a daily basis in order to provide support and encouragement to each other. Those who have not suffered the death of an infant/child are asked to consider the participants’ emotional state when making requests of any kind, and to be understanding when receiving few replies. The number of replies is not indicative of the number of readers, nor does receiving a small number of replies mean that any have been offended or that the poster is being purposefully ignored. Not every participant is able to answer every question, nor is every participant able to find the emotional strength to answer posts in a timely fashion. Please be patient. Please note that participants’ first priority is to each other and they are not a reference source or useful resource for all matters relating to grief.

While there is no rule that prevents those who have not suffered a loss from posting, the primary support system on this board is between loss parents and that needs to be respected and allowed to flourish.

We respectfully ask that any avatars that contain pictures of living children please be disabled before you submit your post. All non loss posters are asked to likewise disable their signatures if they contain references to living children or pregnancy. Avatars with pictures of angel children are allowed.

Regarding Insensitive Posts:
The moderators have received a number of complaints regarding posts that contain insensitive, tactless, or inappropriate content. The majority of these posts have been made by people who have not suffered the death of an infant/child. While these posts do not violate the FTs rules of use per se, they are creating a hostile environment for those who look to this board as a safe-haven. Admin has suggested the following recourse: Participants are asked to report insensitive or inappropriate content to the moderators immediately. If the content is deemed inappropriate or insensitive, it will be deleted. The administration will be notified of repeat offenders and they will handle the situation as they see fit.



Support on the Loss of an Infant/Child bulletin board is based on personal experience, not professional or medical expertise.

[BC-Crystal]

How to Comfort Someone Whose Child Dies
by Susan Dunn

When a friend suffers the loss of a child, we don’t know how to comfort them. Our first thought is usually, “I don’t know what to say.” When a child is lost, we all suffer, and it’sparticularly hard for other parents to deal with. “Friends would cross the street to avoid me,” one client told me. What to say and how to help the grieving parents is a challenge. I had first-hand experience with this when my son died several years ago. Let me share some thoughts from that perspective.

There are some things that aren’t helpful:

*Asking the person what you can do to help, or any question, is beyond their capacity. People devastated by grief can’t make the simplest decision, and they still have to make burial arrangements, etc.

*Saying most of the things they say in movies – he’s in a better place, it was God’s will, your memories will comfort you, time will heal. They make no sense at the time. The person is trying to figure out something incomprehensible and doesn’t have space to fit in other ideas.

*Assuming the grief-stricken person needs to express their emotions. It’s all the person can do to contain the emotions. It’s self-protection to shut down, and it’s necessary. Trying ... trying
anything. The grieving person feels the emotional pull when they’re already on their last nerve and have nothing to give ... this person is trying to make me feel better, make me
cry, make me explain something. It’s a fragile state.

*Thinking the grieving person needs to do something. To the grieving person, it’s pressure, it makes absolutely no sense, and often it isn’t ‘needed’ anyway. “You must eat something,” elicits “Why?” You can’t imagine how you’re bouncing pebbles off a distant planet.

*Words, I’m sorry to say, really aren’t of much use. References to other deaths. It’s just a time not to do that, like sending a book
about coping with the death of a child. The person needs not to be a part of a group –widows who’ve lost husbands, mothers who’ve lost children ... It needs to stand alone.

What, then, can you do? Here are some of the things that helped me through. I can’t say they comforted me, as for a time there was no way to comfort me, and I guess that’s a point to be made. You don’t even want to be comforted. What you want is your child back. My younger sister came to the Memorial Service and just made small talk. When she left,to go back home, she shook her head and said, “Oh Susan.” She left a tape by Ian
Tyson on my bedside table ... rock with me Jesus help me bear this heavy load, don’t let her slip, not let her slide … all cowboys cross the Great Divide.

After the dinner after the Service, folks came back to my house. My niece sat beside me and stroked my hair while she talked with everyone, so I didn’t have to. A colleague at work met me coming out of the elevator my first day back to work. He looked up, then looked down with tears in his eyes and said, “I don’t know what to say,”and walked away with his shoulders bent. He had a son the same age as mine. It was thoughtful of him not to stick around and have me feel the need to comfort him. My friend who said, “Give me a list of people to call. I’ll tell them for you.” My boss said, when I returned to work, “The only reason I’m letting you be here is thatit’s maybe slightly better than being home.” He gave me little things to do, to occupy mymind, but nothing requiring judgment. My twin sister called me every 6 weeks and said she was flying out for a visit. (Didn’t ask, said.) She would show up at the house and just putter ... cook, clean, garden ... She didn’t disturb me. When she answered the phone when I was napping, I heard her say, “She’s seeking the mercy of sleep.” My friend who wrote, “From now on, for me, every tree will be missing a leaf.” My son’s friend who told me, when she heard about it, “That’s really [expletive].” Between visits,
my sister sent me homemade chocolate chip cookies, something symbolic between the two of us. Mother ... home ... happier times. They arrived in shoe boxes,wrapped in plain brown paper. It’s a time to be basic. The people who talked about how wonderful my son was, only at a distance ... by email, or letters. The friend who gave me a gift certificate for 10 massages.

In the acute state of grief, the person can’t think, and there’s no emotional space. What isn’t occupied by grief, is occupied by anger, which the person is trying not to vent against an innocent person. Just be around them, lovingly. Words aren’t absorbed.
There’s authenticity in saying “I don’t know what to say,” when you don’t. Avoid trying to pull their emotions out, or to put yours on them. Don’t make any cognitive or emotional demands. If you can, remove cognitive tasks – tell them you’re picking them up
for dinner at Chili’s, Tuesday at 6, and to wear jeans. A gentle touch means a lot. Accept how they’re being at the time. Understand that for them to respond is asking them for energy they don’t have. Even the most gracious of us are hard-grieving, coaching, put to be gracious at such a time.

[BC-Crystal]

Helpful Do's and Don’ts for the Support Person

DO’s & DON’Ts

*Do let your genuine concern and caring show
*Do be available . . . to listen, to run errands, to help with the other children, or whatever else seems needed.
*Do say you are sorry about what has happened to their child and about their pain.
*Do allow them to express as much grief as they are feeling at the moment and are willing to share.
*Do encourage them to be patient with themselves, not to expect too much of themselves and not to impose any “we should…” on themselves.
*Do allow them to talk about the child the have lost as much and as often as they want to.
*Do talk about the special endearing qualities of the child they have lost.
*Do give special attention to the child’s brothers and sisters at the funeral home, during the funeral and in the months to come. The too are hurting and are confused and are in need of attention which their parents may not be able to give at this time.
*Do reassure them that they did everything they could, that the medical care received was the best or whatever else you know to be TRUE and POSITIVE about the care given their child. Don’t let your own sense of helplessness keep you from reaching out to a bereaved parent.
*Don’t avoid them because you are uncomfortable (being avoided by friends and family adds pain to an already intolerably painful experience.)
*Don’t say you know how they feel (unless you have lost a child yourself, you probably do not know how they feel).
*Don’t say, “You ought to be feeling better by now” or anything else which implies a judgment about their feelings.
*Don’t tell them what they SHOULD feel or do.
*Don’t change the subject when they mention their dead child.
*Don’t avoid mentioning the child’s name out of fear of reminding them of their pain . . .they haven’t forgotten!
*Don’t try to find something positive about the child’s death (moral lessons, closer family ties, etc.).
*Don’t point out that at least they have the other children (children are not interchangeable. . . they cannot replace the child that is gone.)
*Don’t say, “You can always have another child.” Even if they wanted to and could, another child would not replace the child they have lost.
*Don’t suggest that they should be grateful for the other children (grief over the loss of one child, does not discount parent’s love and appreciation of their living children.)
*Don’t make any comments which in any way suggest that the care given their child at home, in the emergency room or whatever was inadequate (parents are plagued by feelings
of doubt and guilt without any help from their family and friends.

[Berni]

When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.

(Henri Nouwen)

[Phud]

The Grieving Person's Bill of Rights

Though you should reach out to others as you do the work of mourning, you should not feel obligated to accept the unhelpful responses you may receive from some people. You are the one who is grieving, and as such, you have certain "rights" no one should try to take away from you.

The following list is intended both to empower you to heal and to decide how others can and cannot help. This is not to discourage you from reaching out to others for help, but rather to assist you in distinguishing useful responses from hurtful ones.

1. You have the right to experience your own unique grief: No one else will grieve in exactly the same way you do. So, when you turn to others for help, don't allow them to tell you what you should and shouldn't be feeling.

2. You have the right to talk about your grief: Talking about your grief will help you heal. Seek out others who will allow you to talk as much as you want, as often as you want, about your grief.

3. You have the right to feel a multitude of emotions: Confusion, disorientation, fear, guilt, and relief are just a few of the emotions you might feel as part of your grief journey. Others may tell you that feeling angry, for example, is wrong. Don't take these judgemental responses to heart. Instead, find listeners who will accept your feelings without condition.

4. You have the right to be tolerant of your physical and emotional limits: Your feelings of loss and sadness will probably leave you feeling fatigued. Respect what your body and mind are telling you. Get daily rest. Eat balanced meals. And don't allow others to push you into doing things you don't feel ready to do.

5. You have the right to experience grief "attacks": Sometimes, out of nowhere, a powerful surge of grief may overcome you. This can be frightening, but is normal and natural. Find someone who understands and will let you talk it out.

6. You have the right to make use of ritual: The funeral ritual does more than acknowledge the death of someone loeved. It helps provide you with the support of caring people. More importantly, the funeral is a way for you to mourn. If others tell you that rituals such as these are silly or unnecessary, don't listen.

7. You have the right to embrace your spirituality: If faith is a part of your life, express it in ways that seem appropriate to you. Allow yourself to be around people who understand and support your religious beliefs. If you feel angry at God, find someone to talk with who won't be critical of your feelings of hurt and abandonment.

8. You have the right to search for meaning: You may find yourself asking: "Why did s/he die?" or Why this way? Why now? Some of your questions may have answers, but some may not. And watch out for the cliched responses some people may give you. Comments like, "It was God's Will" or "Think of what you have to be thankful for" are not helpful and you do not have to accept them.

9. You have the right to treasure your memories: Memories are one of the best legacies that exist after the death of someone loved. You will always remember. Instead of ignoring memories, find others with whom you can share them.

10. You have the right to move toward your grief and heal: Reconciling your grief will not happen quickly. Remember, grief is a process, not an event. Be patient and tolerant with yourself and avoid people who are impatient and intolerant with you. Neither you nor those around you must forget that the death of someone loved changes your life forever.

"How to Reach Out for Help When You are Grieving" Dr. Alan Wolfelt.

[Phud]

All:
I found this great article online regarding grief and I would like to encourage everyone (including lurkers and anyone who has not experienced a loss) to read this. I have noticed that even among my own family and friends, there is an expectation of my grief for my sons to have ended some time ago. I can tell when someone has decided that I am over-reacting to my loss when they use passive-aggressive techniques to belittle what I’ve experienced. For example, they make random references to other losses that may have absolutely nothing to do with what I am going through. As if to say “see, other people have hurt too and moved on, why can’t you?” They talk about their own past losses which are again, unrelated. My MIL talks about how much she misses her mom who died 35 years ago. I lost my father 5 years ago, but I would never compare his death to the deaths of my children! Sure I miss my dad. I miss him A LOT! But if he were here today, he would be the first person to say that Paul and Jack’s deaths were tragic beyond comparison because theirs were lives lost and never lived.

I don’t expect someone who has not suffered the type of loss that I have to immediately know what I am going through, but I do expect those people who love me to try to understand, especially if they are related to my sons. As for those who don’t love me or who are not related to my children, but those who are my friends or acquaintances or even someone who talks to me about my children or in reference to my grief, I expect those people to give my sons the respect they deserve and never to belittle their importance to me.

The Loss of an Infant/Child bulletin board serves as a community of bereaved parents who share, grieve, and support each other. We look out for each other in the darkest of times. If you have not suffered the death of a child and wish to lend your support to those here, please be sure that you do not inadvertently cause more pain. Please read the Welcome Message and be compassionate in your replies.

Grief

Grief is the pain that results from any significant loss, especially the death of a loved one. Grief and mourning (the act of grieving) are normal, not something to avoid (though, heaven knows, we wish we could), nor illnesses to cure. Grief then, is the inevitable cost paid for living and loving.

When a loved one dies, grief is nearly always influenced by factors in addition to the loss of the person who died. Previous losses and related grief may reemerge and add to the pain. There are usually changes in the survivor's role in life, financial status, and living arrangements. So grief is related to the death and to the consequences of the death.

Characteristics and Process of Grief

Grief is experienced globally; with emotional/psychological, spiritual, and physical pain. One would expect sadness and grief after a loved one dies, but often the depth and encompassing nature of the pain of grief is shocking: Grief impacts all areas of life and living. We usually view grief as the response to the death or loss of a person loved in the conventional sense of warm, loving, and reciprocated feelings. However, grief or related feelings are experienced when the relationship was characterized primarily by anger, rejection, or other negative emotion. Grief after death is felt not just for a person and love; but for love unexpressed, anger unresolved, or a relationship unfulfilled. This paragraph may be worth reading again.

The emotional/psychological manifestations of grief include sadness, guilt, and anger. The sadness is profound and often includes aspects of depression. There is intense yearning for the deceased and the life that was shared with him or her. Again and again there is the shock-like realization that the loss is permanent and all the tomorrows will be without the deceased. Sadness comes in waves of despair and crying. There are times when the bereaved person cries and groans uncontrollably.

Of course I knew it would be painful after she died, but I was surprised at how deeply it hurt. I remember telling a friend that I didn't think I would ever be okay again. My wise friend just nodded in acknowledgment of what I said. Eventually I was okay again, but it was a long sad time.

The sadness is expected, but guilt may come as a surprise. Suddenly, when it is too late to do anything about them, all the lost opportunities of the relationship come into sharp focus. Some survivors blame themselves for what happened, "Its all my fault. If only I had . . ." Even more surprising and distressing to some is the anger at the person who died. For many people, it feels "wrong" to be angry at someone who died. Nevertheless, anger is an almost universal (though often denied) response to a loved one dying. "How could he do this to me! Its not fair!" Regardless of how much guilt and/or anger is experienced, however, sadness is usually the most powerful and enduring feeling. There are countless other emotional/psychological responses to grief. Among them are:

Numbness or denial is common and pervasive. "This didn't happen. Its not happening. Maybe I can do something that can change it." In the many attempts by theoreticians to conceptualize grief, the first "stage" is usually numbness or denial. And, in fact, the first response to a terrible event is often denial. However, some form of denial (of what happened or what is felt about what happened) often continues intermittently well past the beginning of grief.

Ambivalence is not only common, but normal. Some people feel obligated to feel only love and sadness, but the fact is, it is common to feel love and anger at the same time toward the same person. We may even feel love and hate at the same time. Of course, many people have the idea that one shouldn't hate - but sometimes and in some ways, it is normal to have feelings that can only be accurately described as hate.

Severe anxiety or nervousness is also common and normal. Anxiety may be experienced as pervasive feelings of dread, nervousness, apprehension, or tension. Some people feel like they are losing control; and if control is ever lost, they feel they will never regain it. Tears come with little or no provocation. There may be increased desire for prescription or other mind-altering substances.

Changes in behavior and relationships may range from an inability to perform even the most basic activities of daily living; to dragging through daily life; to restless, disorganized behavior, including a kind of hopeless searching for what was lost. Relationships are dissatisfying and seem like more trouble than they are worth. Sometimes family conflict occurs or worsens. Developing new relationships seems out of the question. Who could ever understand this much sadness? Life loses its meaning and satisfaction without the lost person, and there does not seem to be any hope of a new life to which the bereaved individual can turn. This inability to relate to others, coupled with loss of meaning is a major factor in the development of despair or hopelessness. There are people who prey (usually sex or money) on people who are bereaved. Be wary of any relationship that involves sex or money.

Disturbing thoughts/experiences may include hallucinations or a strong sense of the presence of the deceased. These may cause great discomfort and the feeling that the bereaved person is losing his or her mind. In the vast majority of cases, these perceptions of presence decrease over time and, unless threatening or abusive, are not generally considered abnormal. Angry feeling about or toward the person who died are common - and distressing.

Grief often affects all aspects of the spiritual life of the bereaved. Without the deceased, life may lose much of its meaning. There may be little perceived meaning in the suffering of the person who died and the pain of survivors. Hope may have been destroyed in the course of the illness; and the future may seem without hope. Relatedness to God may seem impossible. The question arises, "What kind of God would cause this kind, gentle person . . . this child . . . anyone . . . to suffer like this?" Prayers seem empty. Church feels awkward. God seems far far away. Transcendence seems impossible.

Physical manifestations of grief commonly include fatigue, insomnia, anorexia, feelings of choking, shortness of breath, tightness in the chest, menstrual irregularities, and gastrointestinal disturbances. Bereaved persons tend to frequently seek medical attention for vague symptoms such as chest discomfort or abdominal pain. While some physical complaints may seem to have no physiologic basis, there is a clear link between grief and increased vulnerability to physical and mental illness, especially heart disease and depression.
There are certain times when the mourner is most vulnerable to despair. These commonly include (but are not limited to):

• A few days to a week after the funeral when suddenly the support seems to vanish. Relatives and friends go home or back to their jobs and the mourner is left to his or her own devices.

• Holidays, birthdays, anniversaries, and other significant times are often very difficult. The degree of happiness brought by the special time in the past may now be reversed with the same special time bringing corresponding unhappiness.

• The first anniversary of the death is usually very painful. Subsequent anniversaries are also difficult, but may also show the survivor that he or she is doing better.

Complicated Grief

As with any other human behavior or experience, grief and mourning are sometimes carried to extremes in behavior or length - "complicated grief." What constitutes extremes in grief is subject to debate and influenced by culture, who died, the circumstances of the death and other factors. Some experts view mourning that lasts beyond a year as extreme, while others view mourning as normally lasting at least a year. In a sudden traumatic death such as by murder or suicide; or when a child dies, grief may last longer and be more incapacitating. What is normal, then, is not well-defined and varies according to many factors.

The Tasks of Bereavement

In working with mourners, therapists, nurses, ministers, and others have identified some "tasks of bereavement." These tasks can be used as a kind of checklist to identify blocks in the mourning process. The tasks are not, however, a checklist that one can mark off one by one and then be done with grief! Grief is more than that. Some of the tasks are ongoing and all are usually addressed more than once. When one works on or addresses a particular task, one's understanding of self, the deceased, and the relationship usually deepens. The tasks of bereavement include telling the "death story;" expressing and accepting the sadness; expressing and accepting guilt, anger, and other negatively perceived feelings; reviewing the relationship with the deceased; exploring possibilities in life after the death, including, for some, finding new relationships; understanding common processes and problems in grief; and being understood or accepted by others. These are discussed one by one below.

Telling the "Death Story"

Those who gave care and/or were there when the death occurred have a need to tell and retell in as much detail as possible what happened and how they reacted to what happened. In most cases, these stories are an attempt to make it real and understand what happened. Often there is a sense of disbelief that what happened actually happened. In addition to telling the story, some find that they reach a deeper understanding of what happened by writing (and usually rewriting) the story.

Expressing and Accepting the Sadness

It might seem obvious that expressing and accepting the sadness of grief is part of mourning. Not so. Many people, men in particular, feel that they should not express sad feelings beyond, perhaps, acknowledging that some sadness exists. Some people are reluctant to express their feelings because they fear if they ever start, they will be unable to stop. Some families have rules about not expressing feelings, such as "We don't wallow in misery." In other cases, a mourner may be consistently in the role of being strong and helping others to the extent of not helping self, "I have to be strong for her/him/them." Another very common way that feelings are inhibited is through the "comfort" that insists that everything is or will be fine. This alleged comfort comes from friends, family members, and even in funerals that "celebrate" religious beliefs or life rather than acknowledge the pain of life and death. To mourn, it is normal and necessary to express, and gradually, over time, to accept the deep sadness of grief. Note that the focus here is more on enduring than resolving or working through the sadness. TV newscasters send the consistent message that "the healing has begun." So now its time to move on. Not likely!

Expressing and Accepting Guilt or Anger or Other Feelings Perceived as Negative

People and their relationships are not perfect. That seems obvious, but often people and relationships are idealized after death. Moreover, many bereaved persons see themselves as at fault in some aspect of the relationship or the care. "If only I had . . . " then he or she wouldn't have died or would have lived better, etc. etc. Of course regrets are common in relationships. But in grief there often is excessive guilt. Acknowledging and expressing this guilt is sometimes complicated by the bereaved person feeling great shame over his or her perceived shortcomings that, to the guilt-ridden person, seem completely unique.

Of course whatever the perceived shortcomings might be, they are not unique. Talking about the guilt with others is probably the most helpful action one can take to relieve it. Just saying out loud what one feels guilty about can begin the process of putting the feelings in perspective and eventually letting go. Some people find that service to others is helpful in dealing with guilty feelings.
Guilt and anger are sometimes connected. The bereaved person is angry at (the idealized) deceased and feels guilty about the anger. Anger may also be denied or suppressed; or turned inwards to self and ultimately experienced as depression; or be chronically expressed toward others. In any case, anger felt toward the person who died is often directed to any other target. But the fact is, it is normal and usual to feel angry about a loved one dying. It is not wrong to have such feelings; it is just human.
To resolve anger it is first necessary to acknowledge and express it. A major block to expressing the anger is the unrealistic idealization of the deceased and the relationship. It may thus be necessary to take a realistic look at the person and the relationship. He or she was not perfect and neither was the relationship. Looking realistically at the relationship allows one to look realistically at the anger; and then at what lies beneath the anger. Beneath the anger we often find feelings of abandonment, of devastation, of helplessness and hopelessness. There is no magic thing one can do to deal with these. Recognize them, accept them, and gradually, in working through the grief, the "negative" feelings slip slowly away.

Reviewing the Relationship With the Deceased

Too often mourning focuses on the last or more difficult days of the relationship. But there was more than that. In looking at all the days of the relationship with the deceased, one realizes the fullness of the relationship, not just the painful last. This is a task that is both sad and enriching; and necessary to grieving.
Look as far back as the early days of the relationship. For spouses or life partners, for example, one might recall meeting, the courtship, early hopes, disappointments, successes, friends, children, and all else that makes up a shared life. For children (adult or child) of a parent who died, looking back to early as well as later remembrances is important. For anyone, it is important to explore what would have been or what was hoped for had the death not occurred.

Exploring Possibilities in Life After the Death

Looking to the future is a task that usually emerges later in the grief process. Early in the process of grief it may seem like the future holds only the sadness and pain of grief. But as the sadness is endured and worked through, there is a growing awareness that there may be hope for a life in the future. How long this takes varies; it is a gradual process and most people do not at first notice that it is happening. Sometimes the awareness that there may be life (and perhaps even happiness) seems like a betrayal of the deceased. That, too, is part of the process and gradually passes. Rushing into new possibilities is a relatively common mistake. Emotional, sexual, and/or financial commitments or decisions must be approached with extreme caution.
Exploring future possibilities is complicated by the loss of the past. Among adult couples, a death often changes friendships. Not only is the survivor impacted by the loss, and thus less socially able, but the dynamics of couples relationships are also radically changed. Simply put, some relationships no longer work. Bereavement groups are especially helpful in showing that life and relationships are possible.

Understanding Common Processes and Problems in Grief

In times past, grief was often a community experience and people knew how devastating it can be. Now, except for the few days surrounding the death and funeral, grief is often a private experience, and as families and communities, we know less about it than before. The power and duration of grief and its overwhelming emotions are a terrible surprise for many. Knowing what is common or expected in grief helps people understand that they are not abnormal or different. Knowing what is common or expected does not change or make grief easier. It only tells the mourner that he or she is grieving, not losing his or her mind.

Being Understood or Accepted by Others

The emotion and process of grief, along with the way we live, often results in isolation. Isolation, to some extent is a natural part of mourning. But the isolation should be that of the mourner, not of the misunderstood. Family and other sources of support are better able to help when they, too, understand what happens in grief. It is not that they can necessarily change what happens; only that they understand.

Finally

Grief is a terrible and universal experience that affects all aspects of life. It cannot be understood except by direct personal experience. There is no "answer" to grief that can remove the pain like an antibiotic removes an infection. The best we can do is live in it and work to understand it and our relationship with who was lost. Ultimately we look to where humans have always looked for help: family, community, self, and God. We do not always find what we were looking for at these sources. But we keep on because that too is what we, as humans, have always done. And we get better.

[Berni]

Quotes from a good book: After the Death of a Child - Living with Loss Through the Years (by Ann K Finkbeiner)

1. "My life was a story I had been writing and now I knew the story was out of my hands."

2. "I thought that life was a bargain I made: you get an interesting, pretty world, you pay with death. But I had thought, my own death, not TC's. I've paid a fortune for some dime-store junk."

3. "Grief researchers have a mild obsession with how people recover; the reason is that grief researchers are usually in the helping professions, and people whose childen die often need help."

4. "What was a big deal, however, was guilt."

5. "...a child's death is disorienting."

6. "......letting go of a child is impossible".

7. "Shock is probably the body's kindness, the time to realise the facts slowly, to ease into the pain."

8. "I was in a daze....reality was gradually, gradually setting in."

9. "With reality comes pain, and the pain, when it comes, is stunning."

10. "I can remember, within days, being in a shower and thought, 'My God, this pain is all over my body, from my head to my toes.' You just couldn't understand it, it was something you just couldn't understand. Your whole body is in pain. Not just here in your heart."

11. "Searching behaviour is normal for a while for any bereaved person, not just for parents. But parents seem to have extra reason for searching. All along they expected to die before their children, and this expectation runs deep. Parents dying is the natural order of the world. A world in which you are alive and your child is not feels unnatural. Your child isn't here so you shouldn't be...you feel "out of place". You're still here so the child must be too; and so....you search."

12. "You have two choices: either kill yourself or just keep going on day to day. Early in their grief....(they) didn't so much choose to live; they just didn't choose to die."

13. "Its easier as time goes on, not because it goes away but because you yourself learn to do things to help you get through the bad times."

14. "I was like a fish on dry land, no water in sight, and the only alternative was to grow lungs and legs."

15. "The general change moves from numbness and shock to intense pain and longing to despair (which includes depression, anger, restlessness, irritability, guilt and sadness)."

16. "The word "recovery", if it means returning unscathed to normal life, is meaningless."

17. "Neither researchers nor parents believe that grief ends."

18. "PARENTING IS A PERMANENT CHANGE IN THE INDIVIDUAL. A PERSON NEVER GETS OVER BEING A PARENT. PARENTAL BREAVEMENT IS ALSO A PERMANENT CONDITION."

19. "There's still pain, its just not as intense. Some days I still feel a sinking feeling in the pit of my stomach, or a weight on my chest."

20. "The mother takes the death harder, the father doesn't cry and doesn't talk, and the couple argues about the whole thing. Common wisdom says that the deaths of children are harder on mothers than on fathers. It also says that those deaths are hard enough on both parents that marriages often break up. Common wisdom usually contains some truth, if only because people believe it and act accordingly."

21. "The fathers to whom I talked are, like the mothers, at the limits of their capacity to take pain."

22. "I don't know what its like to look across the dinner table and see someone else hurt to the limits of his capacity to be hurt, and I'm glad I don't; it must be a depressing sight."

23. "The divorce rate among bereaved parents is more talked about than understood."

24. "Why no-one agrees on the simple number, the rate of divorce among bereaved parents, is a mystery."

25. "No-one can know exactly what the other feels. But in truth, all couples grieve separately."

26. "When a child dies, both parents must grieve in their own ways, wrote Klass, for the death of a child is a matter for the self in its solitude."

27. (Quote from a father) - "I was on pins and needles for a while because her tact and diplomacy went right out the window. It was just as if she cut people right off at the ankles. She still does it to a certain extent but now I understand it."

28. (Quote from a mother) - "We've each developed some other people that we can count on too.....you can't expect your husband to be supportive to you, he's too busy grieving himself."

29. "Every couple had a period of not being able to get or give the necessary attention. The couples that stayed together....asked other people for support....they tolerated each other's differences."

30. (Quote from a father) - "You just aren't with me when I cry. You're not with me when I have to leave the office or when I have to stop the car because I can't see."

[Phud]

To have your name removed from mailing and or phone lists which may help decrease the amount of baby-related mail you receive and telemarketers who contact you, send your request of removal to:
Direct Marketing Association
Mail Preference Service
P.O. Box 9008
Farmingdale, NY 11735

AND

Direct Marketing Association
Telephone Preference Service
P.O. Box 9014
Farmingdale, NY 11735

Both addresses must be notified.

Include your name (in all its variations, ie. Mr. and Mrs. John Doe, Mary Doe and John
Doe, Parents of Baby Bonnie Doe, etc.), address, and phone number (if you are requesting deletion from the phone solicitation list.)

Or, download preprinted postcards from:
http://www.misschildren.org/cherish/stopthemail.html

[Phud]

Munchausen by Internet:
Faking Illness Online
by Marc D. Feldman, M.D

Online Support for People with Illness - The Internet is a medium of choice for millions of people who need health-related information. Medical websites have multiplied exponentially over the past several years. Thousands of virtual support groups have sprung up for those suffering from particular illnesses. Whether formatted as chat rooms, as newsgroups, or in other ways, they offer patients and families the chance to share their hopes, fears, and knowledge with others experiencing life as they are. These online groups can counter isolation and serve as bastions of understanding, deep concern, and even affection.

Unfortunately, cyberspace resources are sometimes deliberately misused by people intent on deceiving others. False product claims in spam are perhaps the best-known example. But even in the relative intimacy of health support groups, individuals may choose to mislead others by pretending to have illnesses they do not. They divert the attention of the group toward their feigned battles with cancer, multiple sclerosis, anorexia nervosa, or other ailments. The eventual discovery of the deceptions can be devastating. One group member called it "emotional rape" to have cared so deeply about a person who lied to her and others from his first post on.

Munchausen by Internet - For decades, physicians have known about so-called factitious disorder, better known in its severe form as Munchausen syndrome (Feldman Ford, 1995). Here, people willfully fake or produce illness to command attention, obtain lenience, act out anger, or control others. Though feeling well, they may bound into hospitals, crying out or clutching their chests with dramatic flair. Once admitted, they send the staff on one medical goose chase after another. If suspicions are raised or the ruse is uncovered, they quickly move on to a new hospital, town, state, or in the worst cases — country. Like traveling performers, they simply play their role again. I coined the terms "virtual factitious disorder" (Feldman, Bibby, Crites, 1998) and "Munchausen by Internet" (Feldman, 2000) to refer to people who simplify this "real-life" process by carrying out their deceptions online. Instead of seeking care at numerous hospitals, they gain new audiences merely by clicking from one support group to another. Under the guise of illness, they can also join multiple groups simultaneously. Using different names and accounts, they can even sign on to one group as a stricken patient, his frantic mother, and his distraught son all to make the ruse utterly convincing.

Clues to Detection of False Claims - Based on experience with two dozen cases of Munchausen by Internet, I have arrived at a list of clues to the detection of factititous Internet claims. The most important follow:

*the posts consistently duplicate material in other posts, in books, or on health-related websites;
*the characteristics of the supposed illness emerge as caricatures;
*near-fatal bouts of illness alternate with miraculous recoveries;
*claims are fantastic, contradicted by subsequent posts, or flatly disproved;
*there are continual dramatic events in the person's life, especially when other group members have become the focus of attention;
*there is feigned blitheness about crises (e.g., going into septic shock) that will predictably attract immediate attention;
*others apparently posting on behalf of the individual (e.g., family members, friends) have identical patterns of writing.

Lessons - Perhaps the most important lesson is that, while most people visiting support groups are honest, all members must balance empathy with circumspection. Group members should be especially careful about basing their own health care decisions on uncorroborated information supplied in groups. When Munchausen by Internet seems likely, it is best to have a small number of established members gently, empathically, and privately question the author of the dubious posts. Even though the typical response is vehement denial regardless of the strength of the evidence, the author typically will eventually disappear from the group. Remaining members may need to enlist help in processing their feelings, ending any bickering or blaming, and refocusing the group on its original laudable goal.

References:
Feldman, M.D. (2000): Munchausen by Internet: detecting factitious illness and crisis on the Internet. Southern Journal of Medicine, 93, 669-672

Feldman, M.D., Bibby, M., Crites, S.D. (1998): "Virtual" factitious disorders and Munchausenby proxy. Western Journal of Medicine, 168, 537-539

Feldman, M.D., Ford, C.V. (1995): Patient or Pretender: Inside the Strange World of Factitious Disorders. New York, John Wiley Sons

[Berni]

"I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."
- Christopher Reeve