A Special Child in the Family

Death and dying

 

cover of A Special Child in the Family
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Death and Bereavement

If your child dies after a long illness, your first reaction may well be relief. Your child will suffer no longer and the enormous burden of care you have borne is finally lifted. Far from being unable to sleep with grief as friends expect, you may sleep better the first night than you have for many weeks. For the first time you don't have to listen for your child so you can start to overcome the sheer exhaustion which has developed during the previous weeks.

If you react like this you are not being heartless. The tears and grief will come eventually hours, days or even weeks later. Don't feel guilty about your relief. It is only natural. There is no right or wrong way to react to this death. Your emotions are beyond your control - accept how you feel as being right for you at this point of time.

The Funeral

Funerals are for the living not the dead. They are part of the grieving process, forcing those left behind to accept the reality of what has happened and providing an opportunity for them to share their grief openly.

If losing your child is the first time you have encountered a close death, you may never have attended a funeral before. Most people are frightened the first time they go to one so don't worry if you are too. However, don't back out of attending through fear of the unknown - you will probably regret it later and there is no second chance. Funerals are very, very sad but not frightening. If you are worried, ask the undertaker, the priest, a friend or relative to explain exactly what will happen. In particular, ask what happens to the coffin during a cremation if that is worrying you. The answer varies from one place to another. Sometimes it will be lowered out of sight or slide out through doors in a side wall. Alternatively curtains or gates may close, separating that part of the chapel from the congregation. Whatever happens is symbolic - you don't see the actual cremation.

People have mixed feelings about children attending funerals. Personally I believe that any child who is aware of the death of their brother or sister should be encouraged to attend the funeral. Of course, they may be frightened of the idea so either you or someone else they trust should explain what will happen and try to calm their fears, reassuring them that no one will mind whether they cry or not. If you think you will be too upset to support them through the service, ask a close friend or relative to do this for you.

Before the funeral

For many parents, seeing their child's body helps them accept the reality of death. If you were with your child when he died, you will do this automatically. It will probably feel natural to hold him and say goodbye. If you were not with him, you will be able to choose whether to see him or not. This decision is a very personal one and there is no right or wrong choice. If you are in doubt, remember it is better to go sooner rather than later. Your child will look far more dead after three or four days than he will in the first few hours.

Your other children may wish to see their brother or sister. They can be helped by this to realise that all that is left behind is a shell, an empty house. The living being who they laughed and played and fought with is not there anymore. Let them visit if they wish but don't force them if they don't want to go.

It is up to you how involved you are in the arrangements - again, do what feels comfortable to you. You may want to choose the clothes your child will wear and perhaps also dress him and, if he is small enough, place him in the coffin yourself. You and your other children may wish to place special toys or letters in the coffin with him. (These can be removed just before the funeral if you want to keep them). Some parents choose to carry the coffin themselves, either alone for a baby or with the help of friends and family for an older child. All these are right to do if they help you but it is equally right not to do them if you don't want to.

Possessions

If your child was old enough to realise he was dying, he may have said what he wanted to happen to his things. Otherwise the decisions are yours. Don't forget you are not the only people grieving. Your child's school friends and brothers and sisters may like to be offered something tangible to remember him by. Don't feel you have to sort everything out immediately. Some parents pack away items they can't face until they are more accustomed to their grief.

If you have lost a baby and plan to have more children, you may want to keep the baby clothes and equipment for your next child. Some people can't face this, preferring to start afresh next time while others compromise by keeping the major items of equipment but disposing of the clothes. Once again there is no right way of behaving.

Grief

However much you were expecting the death, the loss of your child will turn your whole world upside down. Nothing will ever be the same again and, in that sense, it is true to say you will never get over it. You will however become used to it in time. There will be happy times again although you will never forget this child you have lost.

If you have never previously lost anyone close to you, the intensity of your grief may be frightening. You may fear you are losing your mind but you are not. Grief is a natural process to be worked through however painful it may feel at the time. Tranquillisers and sleeping pills are not the answer. They may make it easier for those around you to cope by making your reactions less intense but they only delay your mourning, they don't replace it.

At first, you may feel numb, unable to accept what has happened and react to it. Long established habits can't be unlearned in an instant so don't be surprised if you still lay the extra place for meals, buy enough food for your lost child or even buy clothes for him. Other parents find the same problems. You will also not be alone if you make silly mistakes and find it difficult to perform simple tasks and easy household tasks. One mother told me how, shortly after her son's death, she unloaded the frozen food from her shopping and put it in the oven instead of the freezer.

As the numbness wears off, other emotions surface. As well as sadness, depression and loneliness, you may feel anger, resentment and guilt. These emotions don't come tidily in order. You can't think "Oh, good, I'm at the angry stage so I only have resentment and guilt left to work through." Instead they come jumbled up so you jump from one to the other, sometimes at bewildering speed.

You may also suffer physical symptoms of distress - loss of appetite, indigestion or headaches to name but a few. You may find you can't concentrate, that you panic more easily and that you worry more about the safety and well-being of the other people you love. All these reactions are as natural as the tears every one expects from you.

Grief is an individual process. You, your partner and your other children may all react differently, experiencing the various emotions at different times. Anger over the death may spill out as short temper and petty rows. Your children may be clingy, demanding or bad tempered just as neither of you feel able to cope with them. Hang on - don't give up. Stay together and keep talking for life will slowly return to a new normality.

Brothers and sisters

Your other children will need to grieve for their dead brother or sister. Don't pour all your energy into keeping life going on normally or you may make them think they should hide their feelings. Just as you find it difficult at first to cope with everyday life, they may need a short break from school before they can cope again. It gives them time to share in what is going on and to cry with you.

If your other children are very young, they may keep expecting their brother or sister to come back as they don't understand the finality of death. Only time will help them learn the truth and their grief may be reawakened when they do.

Your other children probably didn't like their dead brother or sister all the time. They may have shouted at him, told him to go away or secretly wished he was dead so they could have all the attention he was receiving from you. This can leave them full of guilt once their brother or sister has died. They may even worry that they caused the death by wishing for it and need reassurance that none of what has happened was their fault.

Other people

Some people may avoid you after your child's death because they don't know what to say. Others feel they must say something and come out with platitudes that hurt. "It's a release" and "It's better this way" can make you feel guilty for grieving, as if your hurt should be less because your child had special needs. Worse still are the comments like "You're young enough to have another baby" which suggest children are interchangeable like toy dolls.

People are not trying to hurt you - they are just trying to help but being very misguided in the attempt. Perhaps there are no right words beyond the simple expressions of sorrow and sympathy. The friends who can help are those who can listen to your feelings without judging you and talk with you about your lost child without embarrassment at your tears. One home teacher for pre-school children told me how she always continues going to the home after a child has died until the mother herself feels ready for the visits to stop. She drinks tea and shares memories, talking about the child and looking at photos, for she realises how much bereaved parents need to talk about their dead child and how difficult it is for them to do it. Many parents complain of a conspiracy of silence among the people they meet who all avoid any mention of their child.

Many parents find support from others who have lost children. From them, they gain reassurance that their reactions are not abnormal. With them, they find understanding of their need to talk about their child. If you feel you would benefit from such support, contact The Compassionate Friends who can put you in touch with other bereaved parents willing to help you.

Avoid big decisions

It's easy to want to run away from all the hurtful memories, to move to a new house and new surroundings. However, the early stages of grief are not the times to make such important decisions. You are not yourselves and you can easily make changes you will later regret. A move now may lose the painful memories but it will also lose the good ones and your friends. Your other children too have enough to handle without expecting them to cope with changing schools.

It is also best not rush into having another baby. Wait until you are more accustomed to your grief so you can accept your new child as an individual rather than as a replacement for the one you have lost.

Keep busy

Other bereaved parents have all recommended keeping busy. Dad probably is anyway unless he gave up work to help care for his child. It is usually Mum who finds the hours endless while everyone is out all day. Find something to fill those empty hours - a job, voluntary work, redecorating, anything which will force you to keep busy.

In the long term

Be prepared for grief lasting a long time. Other people may expect you back to normal in a few weeks but you won't be. Readjustment to this new reality will take much longer than that. You will never forget this child you have lost but you will learn to live with your memories, to feel joy and happiness again. That does not mean the old ache will not return on his birthday or when you realise that he would now be starting school. But you can move on to a new life, hopefully better people for having had this child, however briefly.

While I have been researching, many people have shared with me words that have brought them comfort. I have not room to include them all but I am ending this section with the one I find most helpful myself.

Death is nothing at all. I have only slipped away into the next room. I am I and you are you. Whatever we were to each other we still are. Call me by my old familiar name, speak to me in the easy way which you always used. Put no difference in your tone, wear no forced air of solemnity and sorrow. Laugh as we always laughed at the little jokes we enjoyed together. Pray, smile, think of me, pray for me. Let my name be always the household word that it always was, let it be spoken without effect, without the trace of a shadow in it. Life means all that it ever meant. It is the same as it ever was; there is unbroken continuity. Why should I be out of mind because I am out of sight? I am waiting for you, for an interval, somewhere very near, just around the corner. All is well.

Henry Scott Holland (1847-1918) Canon of St Paul's Cathedral