Written by Anahera Herbert (Auckland Maori SIDS Prevention Coordinator) Te Tangi o nga Ngakau Mamae - The Cry of the Broken-Hearted

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1 1 Grief Series Article 1 Pouritanga Grief Written by Anahera Herbert (Auckland Maori SIDS Prevention Coordinator) TE POURITANGA O NGA MAATUA - The Grief of Parents after an Unexpected Sleep-related Infant Death Te Tangi o nga Ngakau Mamae - The Cry of the Broken-Hearted Anytime a baby dies it is a shock, because babies are not supposed to die. Baby deaths from SIDS (Sudden Infant Death Syndrome) are especially shocking because they are so unexpected and there are so many unanswered questions. These aspects of a SIDS death mean that those left behind, especially those who found the baby, often experience feelings of kaniawhea me whakahe (self-blame and guilt). Two other aspects of a SIDS death intensify the grief for survivors. First, the fact that the coroner and police are always involved when a baby dies unexpectedly can leave survivors feeling whakama (embarrassed or ashamed). Second, the fact that an autopsy has to be carried out on the baby can render the survivors kore ihi (powerless) It is important to know that, although every person who loved a baby who dies of SIDS will grieve in their own unique way, there are no right or wrong feelings. It is only what we do to ourselves or others as a result of these cries from a broken heart that have a moral value. More about this later. Te Haepapatanga o Nga Pirihimana - The Role of the Police When the police arrive at a home where a baby has died suddenly and unexpectedly, it is easy for whanau to think they are under suspicion for their baby's death. Also they may fear that upon seeing the police cars parked outside their house, neighbours, other family members and friends will assume a crime has been committed. While it is true that the police do have to find out if a crime has been committed there is another main reason, which has nothing to do with crime detection, that they always come to a home when a baby has died there. When someone dies suddenly and unexpectedly in New Zealand, their death is automatically reported to a coroner who is then responsible for determining the cause of their death.

2 2 Because coroners in New Zealand have no investigative staff of their own, they use the police. So one of the main reasons the police come to the death scene is to look for and provide the coroner with clues as to why the baby died. This is also why autopsies are carried out. In turn the coroner will try to provide the parents and others with answers to the same question. He Whakaritenga i te Pouritanga - Grief is a Process You already know how painful the grief is after the death of your baby. Hopefully the tangihanga helped you through the initial days after the death. But what happens now the funeral is over? In former times whanau whanui were always close at hand after the funeral to oversee and help the whanau pani return to the business of living. But that is not always possible anymore, and probably most if not all others have had to return to their own lives immediately or soon after the tangihanga was over. Yet this is the very time when the full extent and sharpness of your baby's death may hit hardest, so that it can seem to consume every waking second of every day. This is the time when normal feelings can become destructive. It is important to understand what is happening and why, to know that others have experienced similar deaths and that their many experiences of how they coped can also help you to eventually come out the other end of this process. Grief does seem to happen in broadly similar patterns or phases. The phases may overlap or you may find yourself in different phases at different times, and different people in the same whanau will pass through them in different ways. Whatever pattern your grief follows, remember that it is a normal and necessary part of healing a heart that broke with the first realisation that your baby was dead. Avoiding Many whanau report that first moment of realisation as something they wanted to avoid and a time when they went into a state of shock and numbness. Professionals call this "avoiding" and why wouldn't you want to avoid and escape that painful moment? Shock and numbness are very useful, healthy and normal responses to pain which is too great to take in all at one time. They act like an airbag that help you avoid getting totally crushed in a wreck and they will last for as long as it takes you to gather the emotional wherewithal to begin facing the fact that baby has died. While you are in this "avoiding" phase you may have found or still be finding that your emotions seem uncontrollable. You may have a hard time taking in information. Your appetite may disappear. You might feel completely exhausted, but be unable to sleep at night. Or the reverse may occur, and you may want to sleep all the time.

3 3 Your feelings may range from being "in a fog," to fear and anxiety, to guilt or depression. There might be times in which you think you are losing your mind. During this time, expressing your true feelings is healthy and it's important to do the things you need to do and not to worry about what people think or expect of you. Avoiding is normal behaviour, as long as it does not become destructive of either ourselves or others, and it will take as long it takes. Confronting When you are ready you will begin confronting your loss. Seeing, touching, and holding your baby during the tangihanga will likely have helped you to begin this process of confronting. But many whanau say they found that once they were back in their own home, they had to find substitutes for touch and sight to help them continue the process. Some found that having pictures, a blanket, special toy, or other tangible memories of their baby was very comforting to them. Others said that as time passed they found themselves looking for their baby, hoping somehow to find him. One mother even thought she saw her son in a pushchair at the local mall. It helped her to know that for many people this "searching and yearning" is a normal part of their grieving. It is also normal for some to feel anger. That anger may be directed against the ambulance officers who came to the scene after they called "111", or against those at the hospital who were in the emergency department if the baby was taken there. One father said he was particularly angry at the person who broke the news to him that the baby had died. He also said he was angry at God. An older sister shared how she even felt angry with her baby brother for dying because it hurt so much. Sometimes anger may turn inward, toward yourself, and that too is normal. It is normal to ask "Why?" and to feel disoriented and disorganised. Depression and sadness are often the strongest emotions. You may experience a lack of motivation. You may overeat or be unable to eat. You may have difficulty making judgments or decisions. You may lose interest in your appearance. You may find that you do not wish to go out socially, even to family gatherings. You may avoid people and relationships which are most important to you. Over time, as you begin to confront your pain and talk about it, you will begin to experience "good" (or at least better) days, and after a while you will enjoy these better times more frequently. When you first start having them, you may feel guilty that you are being disloyal to the baby, or that you are forgetting him. When good days begin to come more often, be glad and enjoy them. Grieving is hard work, and sometimes a break from the hurt can be a wonderful, refreshing relief.

4 4 There is no time limit on this part of grieving and it may be that some of your saddest feelings will seem to have worsened months after your loss. But again, the process will take as long as it takes. Do not be ashamed of how you feel. Feelings are not right or wrong; they just exist. Remember, it is what we do to ourselves or others as a result of feelings which has a moral value. A New Normal At some point in your grief journey, you will reach a phase in which you begin to come to grips with the fact that your baby is gone and will not come back in this life. Some people describe this as "turning a corner" and finding a new direction. You realise that the "normal" person who once was you has changed. But you begin to discover a "new normal." This phase is often slow in coming. Sometimes it takes a year or more or happens after the hura kohatu. But when it does come, you ll start to find new energy to reinvest yourself in life and in the things which matter most to you. Your actions will no longer feel mechanical. Your judgement will be markedly improved. You ll have a sense of release and renewal. You ll find a bitter sweetness as you remember your baby, and your memories will often comfort you. You ll finally reach a place in which you can begin to enjoy yourself again and have a good time without feeling guilty. While moving through the process of grief, you need to be patient with yourself and with others. Each whanau member may experience the phases at different times, at different intensities and in different patterns. Be accepting of those differences, and give each other space and time to grieve in your own way. Feeling like you are moving "three steps forward and two steps back" is normal. It s important to communicate your feelings to your whanau, especially your partner. It will help you understand and accept the different ways in which you each grieve. There will be times, such as your baby's birthday or the anniversary of their death, when the pain of your grief will hit you anew - like a spasm. This painful wash of sadness can also be triggered unexpectedly by other things. It is important to know that this too is both normal and temporary. It may help your healing to meet other parents who have experienced the loss of a baby. Talking individually with other parents or attending a support group can be very helpful in confirming that the wild emotions you are experiencing are normal. It can help you know how to deal with other people and their insensitivity. It can help you discover the differences in the ways that men and women grieve so that you and your partner can help each other. If you are a single parent, it can be very helpful to find that you aren't alone and that a support system can also help to prepare you for what to expect and what to do with yourself when you are facing a special date or anniversary associated with the baby.

5 5 You will never forget your baby. However, in time your heart will heal, and you will be able to go on with your life. You will be able to remember your baby and their death in a less painful way and look positively toward the future. We finish with some suggestions from a mother who has experienced the grief of losing her child to death. Te Whakaoranga o To Ngakau Mamae Healing Your Broken Heart Time alone will not heal grief. You have to deal with it, to work through it. In the process of working through it, you can actually transform grief into personal growth. You can allow your grief experience to help you grow as a person. Here are some suggestions for growth: Accept the grief: Roll with the tides of it. Do not try to be brave. Take time to cry. This also applies to men. Strong men can and do cry. Talk about it: Share your grief within your Whanau. Don't try to protect each other by silence. Find a friend to talk with. Someone who'll listen without passing judgment. If possible, find someone who has experienced a similar sorrow. And talk often. If the friend tells you to snap out of it, find another friend. Keep busy: Do purposeful work that occupies your mind, but avoid frantic activity. Take care of yourself: If you don't care for yourself, you could get sick. Right now you may feel that you don't care. That will change. You are important. Your life is valuable; care for it. Eat well: During this time of emotional and physical healing, your body needs good kai more than ever. If you aren't hungry and are just picking at your food, take a good multiple vitamin each day. Taking vitamins will not make up for a poor diet, but will help. Be good to yourself, and try to eat things which will be healthy for your body. Exercise regularly: Begin a regular program of exercise as soon as your doctor tells you it is safe to do so. Exercise causes good chemical reactions in your body which will help lighten depression. You will also sleep better. An hour of walking every day is ideal for many people. Let go of guilt: You did the best you could at the time, all things considered. If you made mistakes, learn to accept that we are all imperfect. Only hindsight is 20/20. If you are convinced that you have a real reason to feel guilty, consider professional or spiritual counselling to help you deal with the guilt and forgive yourself. If you believe in God, a pastor can help you to believe also in God's forgiveness. Accept your understanding of the death: You have probably asked, Why? over and over and have finally realised that you will not find an acceptable answer. But you probably have some small degree of understanding. Use that as your viewpoint until you are able to work up to another level of understanding.

6 6 Join a group of others who are grieving: Your old circle of friends may change. Even if it does not, you will need new friends who have been through your experience. A group of bereaved parents can help you experience meaningful sharing and support. Associate with old friends also: This may be difficult. Some friends may be embarrassed by your presence, but they will get over it. If and when you can, talk and act naturally without avoiding the subject of your loss. Postpone major decisions: Wait several months before you decide to do anything like sell your house or change jobs or have another baby. Record your thoughts and feelings in a journal: If you enjoy writing, it helps to put feelings and thoughts on paper. It gets your feelings out and also records your progress. Turn grief into creative energy: Find a way to help others. Helping to carry someone else's load can help to lighten your own. If you have writing ability, use it. Great literature has been written as a tribute to someone loved and lost. Take advantage of your religious affiliation, if you have one: Writings from all faiths and religions have much to say about sorrow. As time passes, you may find you are not so mad at God, however you conceive him to be, after all! [Anonymous]