Not all children with special needs die young. Many have a normal life expectancy. However, the sad truth is that some special children are extra vulnerable to infections while others have terminal illnesses. If you know your child may or definitely will die, you have every right to feel frightened. For you, every parent's nightmare is a reality.
When our boys were first diagnosed, the prognosis for cystic fibrosis was much worse than it is today so the fear of losing them was very real. It haunted me. I dreamt I was at their funerals. When other parents talked of choosing primary schools, we wondered if they would live long enough to ever go to school. Occasionally we would hear of another CF child who had died and our blood would run cold. I would hold my baby close, trying to protect him from these dangers I didn't fully understand.
So how can you live with the prospect of approaching death, whether it's a certainty or just a possibility? There is no one way of coping. I cannot give you the perfect solution for everyone is different. I can only suggest ideas based on my own experiences and those of other parents and the professionals who work with them.
Try, if you can, to look your fear in the face and admit it is there. Talk to each other about it. Ask the doctors what is likely to happen. How rapidly will the disease progress? Is death likely to come suddenly without warning or will it be preceded by a gradual deterioration? Such questions may sound morbid but it is easier to face something if you know as much as you can about it.
If death is still a long way off or only a possibility, you have to try to move on, to return to the world of the living. Although you know what the future could bring, you need to push that knowledge to one side and live for today, not thinking too far ahead. It's a mental trick you can acquire with practice but you won't manage it all the time. Occasionally some event or chance phrase will trigger all your emotions again and you will feel in turmoil. Accept the feelings as natural - don't make yourself feel even worse by feeling guilty about them.
If the prospect of death is more imminent, you have to cope with the realities of the situation. There are practical decisions to make but remember there are no right or wrong answers. Every child and every family is different. Listen to the advice offered but don't let people talk you into actions which feel wrong. Make the decisions which feel right for you and your family for it is you who will have to live with them.
It's frightening to be part of a family where something is wrong but you don't know what it is. It can leave a child isolated and alone. My father died of cancer when I was 14 and I was trapped by the secrecy that surrounded the disease at that time. No one spoke to me about what was happening, I did not feel able to talk about it either. Years later I can still remember the loneliness and the fear.
Don't exclude your other children from what is happening. Give them a chance to talk about their fears. They need to know you still love them and that they still matter, even though their brother or sister takes so much of your time. If you find it difficult to give them as much attention as they need, perhaps a relative or close friend could spend extra time with them.
Try to involve your other children as much as you can. If your sick child is at home, show them ways to help if they want to - perhaps they could work the tape recorder, play games or read stories. If their brother or sister is in hospital, encourage them to visit, draw pictures and write letters. Don't expect them to be miserable all the time. Let them laugh and play as much as they want. Your sick child will probably enjoy life going on around him.
If you spoil your dying child, you may breed resentment in your other children. Remember you don't have to shower a child with material things to show him you love him. Giving him time and attention does that. Of course, there may be special places you want to visit and things you want to do before it is too late but those treats do not have to be exclusively for your sick child. If possible, make them family events for you all to share and for you all to remember.
The issue of how much to tell your child about his illness is a very emotive one. There are no certain rules to follow because all children are different. I am grateful to Lenore Hill for allowing me to quote the following advice she gave in an article for parents. At the time she wrote this, she was Head Nurse at Martin House children's hospice so she has worked with many dying children and their families.
Some children remain very aware of the treatment that they are going through and of the life they are living. Others have become less aware because of the nature of the disease, but for children who are aware and able to understand, it is important that you share with them as you share with the brothers and sisters, but you will know what is right to do for your family. You will be sensitive to your own children, and to the questions they are asking. It is important to go at the child's pace and not to rush in there in front with things they haven't got round to asking about yet. But as they do ask it is important to be able to spend time with them and to be able to answer their questions honestly. Some parents find this very difficult, especially if the child is going to die. But I think that if we are not honest with them, if we don't share with them, it doesn't actually protect them. There are very few children who are not conscious of the truth. What we do is isolate them in the situation by themselves, because they will try to protect you. If they put out feelers and you don't answer they will withdraw, they'll realise that it's too hurtful for you, and they will stop asking, but they won't be unaware. They'll just be isolated in their situation, because you've not let them talk to you.
All I would add is that if you really can't meet your child's need to talk about the prospect of his death, try to find someone else who can. It could be a close friend, a grandparent, a nurse, a psychotherapist or anyone else your child trusts. Qualifications are less important then personality.
Caring for a child with a life-threatening progressive disorder is hard work, physically and emotionally. A very special type of help is available from children's hospices. They offer long term friendship and support to your entire family. You can all stay for a while or you can leave your child there while you have a holiday, give the other children extra attention or catch up on the chores and your sleep.
Once you are in touch with them, their support is available throughout your child's illness. It doesn't even stop when he dies but continues afterwards to help you through your grief. If you feel one of the children's hospices could help you, ask your doctor or another professional to make enquiries or you can contact them yourself.
Obviously the doctors will do as much for your child as they can. With many conditions, they will keep fighting death until the very end. Sometimes though, a time comes when no amount of treatment will prevent the inevitable, when the extra few days which may be won by yet another course of drugs is not enough to justify putting your child through yet more unpleasant side effects.
Once again there are no hard and fast rules. Be sensitive to your child's feelings and, if you think both you and he have had enough, talk to the doctors. Perhaps the time has come to limit treatment to making your child as comfortable as possible.
If your child is in intensive care, facing the inevitable may involve turning off some or all of the supporting machinery to allow nature to take its course. Our experience is that medical staff know how hard this decision is to make so they are very sensitive to your feelings if they have to suggest it.
If death comes suddenly, you will have no say in where it happens. However, if your child is slowly deteriorating, the question arises of where he should be at the end. Once again there is no right answer. What is right for you depends on your own feelings and your child's, how much you feel you can cope with and what support you have. If you have good medical care available at home through visiting doctors and nurses, you may feel more able to cope at home than you could with no help available. If you are already in touch with a hospice, you may feel that is the best place for your child to die.
Do what feels right for you as a family, whatever anyone else says. In particular, don't feel you have failed your child if you initially decide he should spend his last days at home but unforeseen circumstances force his admission to hospital at the last minute .
Immediately after your child dies, you will be faced with some decisions which have to be made quickly just as you feel too upset to decide anything. If you can force yourself to think about them in advance, you may save yourself making decisions in the heat of the moment which you later regret.
After death, your child will be washed and dressed. If you would like to do this yourselves as part of the process of saying goodbye, say so in advance to the nurses caring for your child. Otherwise they may not think to ask if you want to help when the time arises. As with everything else, there is no right way to behave. Only do this if you want to - you will not be letting your child down if you don't.
In those first hours after your child's death, it can hurt to be asked for permission for a post mortem. If you have already seen your child suffer many painful treatments, it's easy to turn down the idea, feeling he should now be left in peace. However, you may regret that decision later if the exact nature of your child's condition is not known. A post-mortem may be the only hope you have for a proper diagnosis to tell you the risks to any future children although it is fair to point out that it may not provide the answers you need. If you can face up to the prospect, discuss the idea of a post-mortem with your child's doctors before he dies when it may be easier to listen objectively to the arguments.
Another idea worth discussing in advance with the doctors is the possibility of donating any of your child's organs for transplantation. At the time of death you may be too upset to ask about it, and others may hesitate to broach the subject for fear of upsetting you further. By the time you think of the possibility, it may be too late.
Some parents feel their child has already gone through too much and should be left in peace. Others feel helped by knowing their own child's death has, at least, saved another family from the sorrow they themselves face. An older child may have indicated his own feelings on this issue, perhaps by carrying a donor card. Please don't be disappointed if your offer for your child's organs to be used is rejected. His illness may mean they are not suitable.
Arranging the funeral requires a whole flood of decisions. Should it be a burial or cremation? Should you ask for flowers or donations to charity? Do you want a religious service? Which music do you want? It may seem morbid to consider these questions before your child dies but to do so can ease the load later. One family even went to the trouble of visiting all the undertakers long before their child's death and choosing which they would use. They then felt able to relax, knowing that when the time came they could put the arrangements in the hands of someone they trusted.
I doubt if many people could go this far, but it is sensible to think of the other issues. An older child may express his own preference on burial or cremation. Otherwise choose what feels right to you. Some people like to have a grave to give them a place to visit. Others don't.
You don't have to have a religious service at a funeral unless you want one. Some people design their own ceremony, playing favourite music and asking friends to read words with particular meaning to the family. If you have no religious connections but want a service, you can avoid the impersonality which can result from the priest being a stranger by asking him to read out something written by the family about your child's life.
Remember above all that funerals are for the living, they are part of the grieving process. By then your child will be free like a butterfly. All you are disposing of is the cocoon, the discarded shell.