Children's Hospice

Sister Frances Dominica, the founder of Helen House, writes movingly of how children and their parents cope with suffering and death.

This article was first published in the Spring 2002 issue of Chrism. The author's profile below is from the same date

Sister Frances Dominica was born in Scotland in 1942. She trained as a nurse at the Hospital for Sick Children, Great Ormond Street and at the Middlesex Hospital, London. In 1966 she joind the Society of All Saints, and Anglican Religious Community. she became Mother Superior General in 1977 and continued in this role until 1989. She is the Founder and Director of Helen House, the world's first Children's Hospice, which opened in 1982 in Oxford. Helen House gives respite care and terminal care to children with life-limiting illness, offering friendship and practical support to them and their families. The friendship continues after the death of the child for as long as the family may wish. A New project, Douglas House, a respice for young people, due to open in 2003, will extend care to those between the ages of 16 and 40. Sister Frances continues as a Sister of All Saints Sisters of the Poor and enjoys a wide variety of occupations and interests, as well as lecturing and writing on the care of children and young people with life-limiting illness and their families.

© Guild of St Raphael

Whose Side is God On?

'I am not always sure whose side God is on . . . I know God is there, but he never seems to be there when you need him. Will he be there if I fall over? Or if I fell down stairs?'

These were pertinent questions. Jack’s brain tumour was affecting his balance. Treatment had been unsuccessful. He was 11 going on 65, carrying the burden of the grief of his distraught parents and sister and painfully aware that death was not far off. Inside there was an 11 year old, desperately trying to ride a bicycle and go to school and do 11 year old things. His upbringing had engendered in him an old world courtesy, but anger bubbled inside him, like a poisonous brew in a cauldron. It took the death of a younger child in the hospice during one of Jack’s respite care visits to release some of that anger. He raged against God and the unfairness of it all, he cried for a long time, and the evident relief was as if a little of the poison had been drained off.

How do children cope with suffering? It is a question we are often asked and the only honest answer is that like adults they cope with it as unique individuals, no two alike. Each time we come alongside we are treading new ground and it is best if we do not come with preconceived ideas. There is, of course, some common ground—fear of the unknown, loneliness and a feeling of isolation, the awareness that in travelling from life to death and beyond the people you love and trust most, who have always been there for you, cannot travel with you. ‘If only all four of us could die at the same moment . . .’, said a seven year old. And as an afterthought she added, ‘And then no-one would be left behind to be sad.’ Like so many other children who face death she became years older than her chronological age in her concern for her parents, almost reversing roles. ‘When I am in heaven with Jesus’, said another child of the same age, ‘will you make sure Mummy and Daddy watch the Care Bears Movie ‘cos I think it will help them’. A 13 year old boy suffering with muscular dystrophy also expressed his concern about his mother after his death: ‘When I die I want my body burnt because it hasn’t been much use to me but I want my ashes buried with a headstone because Mum will need somewhere to visit’.

Guilt is sometimes too great to bear, the guilt of causing such grief and distress to the people you love. A 10 year old who suffered with a rare and fatal genetic illness, as did her 2 year old sister, watched her parents’ marriage fall apart and tried to commit suicide. She blamed herself for their distress and, at least in part to ease that distress, she wanted to be out of their lives. She lived another three years. One night she prayed: ‘Dear Lord, please look after everyone in the world, most of all look after my sister Katie, as she has the same thing as me but worse. She has a tube down her nose to be fed through and she is sucked out often. Please look after her and may she be healed of her ulcer one day. Also please look after my mum and I pray that we may win the court case. I pray that she will be able to cope with Katie and I and no longer have migraines. Please look after me and I pray that one day I may be able to walk again . . .’ After her death I found a tiny scrap of paper with these words in her handwriting. ‘Why do I feel like this? We’ve won the court case. My mum has got custody of my sister and I. Oh why why why? All I have to do now is win my life. And I don’t know how.’

Children often try to protect their parents by pretending they don’t know they are going to die. A 12 year old with cystic fibrosis telephoned us from home one day. He had stayed with us twice for respite care, his parents coming too. This time he had other ideas. ‘I’m sorry to bother you but I’m bored at home and I’m fed up with my parents. Can you book me in for next week please and they won’t be coming with me?’ His parents took some persuading; they had never left him anywhere before. Finally he got his way, but not before they had told us that he didn’t know what the future held for him and that was how they wanted it to be. We promised we wouldn’t set out to go against their wishes but if he approached us we would not lie or try to pretend. If we did he would never trust us again. He waited until his parents had gone and then said to the youngest, least experienced member of our team, ‘I got cystic fibrosis real bad. I’ll probably be dead this time next year. What’s it like?’ He probably didn’t really want a definitive answer because he was bright enough to know we probably didn’t have one. I guess he just wanted brief reassurance—and the comfort of knowing we knew that he knew. As the trust between us and the family grew he let us tell his parents that he knew, but clearly looked to us to support them. It is very frightening to see your parents not coping.

It takes tremendous courage for a parent to tell a child that he or she is not going to get better and is probably going to die. It tends to be that as you live, so you die, as you face life, so you face death. If you have had an open, honest relationship in good times, you will probably want the same at times of great anguish. The mother of a child who died at the age of 7 as a result of neuroblastoma is convinced that he was aware for some time of the probability that he would die, but most of the time he was intent upon a simple examination of the facts of his illness and treatment and the task of living. His family had created a cosy corner for him, within earshot of the kitchen. One day his 5 year old sister returned from school and curled up beside him to watch television. His mother overheard a conversation between them in which the little girl asked her brother where he would like to be buried. (His imminent death had not yet been discussed with either of them.) ‘I don’t know,’ came the reply. ‘but probably in that churchyard where some other people from our family are buried. Then we could all come out at night and have spooky parties!’ His mother felt it was very important for him—and for her—that they should be open with each other about his death, and a few days before he died he gave her the opening. ‘Yes,’ she said, ‘you probably will die’. He reacted as if she had asked him to go for a very long walk on a stormy day. ‘I’d really rather not,’ was all he said.

Young people cope with the fact that death will come sooner rather than later in different ways. A 16 year old said, ‘I know I’ll be dead before I’m 22 . . . but that’s alright.’ ‘Are you afraid?’ ‘No, but you know I don’t really think too much about it—I just get on with life. I know what might happen but you can decide to be miserable or you can decide to be cheerful and being miserable would only make things worse and worse.’ Another teenager spoke of his own death and in the next conversation spoke of his plans to train as an engineer, like his dad. I believe he needed to plan a positive future for his own sanity and well-being. When he talked of it he really believed it was possible. The knowledge of forthcoming death was lodged in a different compartment of his mind.

Of course it isn’t just the sick child who suffers. However hard a family and friends try, the well brothers and sisters suffer terribly, first of all because almost inevitably everyone’s attention seems to be focussed on the sick child most of the time. There is also the embarrassment of having brothers or sisters who are different. ‘Children at school seemed fascinated by my disabled brother and sister. I remember one time when a friend came back for tea, and stood paralysed against the wall, unsure of what to make of Craig’s crawling. Her reaction really upset me, as did the stares when we all went out. I felt protective of Craig and Becky—I’d stick my tongue out if I saw people gawping. . .’

Telling a well brother or sister that the sick one is going to die is as hard as telling the one who is dying. I make no excuse for quoting a mother at length as she tells that part of her story with exquisite poignancy.

Our lovely Harry died aged six and a half in November 2000. Apart from Harry’s diagnosis and death one of my very worst memories of that time is of telling his five year old brother Cameron what was going to happen.

My Mother died exactly a year before so Cam understood exactly what dying meant. He had been deeply shocked by my Mother’s death and both he and Harry had asked endless questions—until they had some understanding of what it all meant. When we knew that Harry was nearing the end, (he was by this time at Helen House on a morphine syringe-driver), we felt we must warn Cam. Like many of the younger siblings at Helen House, Cam had grown up with a terminally ill brother and knew no different. This was his ‘normal’ and he was completely happy with his adored brother. They did everything together—attending the same school, playing with the same friends, bathtimes and sharing a bedroom. Harry was the eldest and very much the leader, but relied on Cam to enable him to put plots in action—they were a real team. Their often hysterical laughter rang through our house much of the time—unless of course they were suffering sibling rivalry!

Cam was kneeling in the corridor outside the bedrooms at Helen House playing a game. I knelt down beside him in fear and trepidation, not knowing what I was going to say—this was sheer hell. ‘Cam, do you know how ill Harry is at the moment?’ I said. ‘ No’. He looked at me wide eyed and innocent. ‘Cam, I don’t know how to tell you this, but Harry’s going to die in the next day or two’. Cam’s jaw hit his chest—it quite literally dropped. He looked as though he’d been hit by something that had knocked all the air out of him, and then he carried on playing. The news had to sink in slowly so I left it at that moment. I felt as though I had taken away his innocence and something died in me too.

Over the next day and night, Cam asked numerous questions which we answered honestly, he alternated playing (always accompanied by a member of staff and never on his own) and quizzing us on life and death. When Harry died the next morning Cam was out of the room, but we brought him in immediately and he said his own goodbyes. His shock was indescribable but totally visible—it hurt me to the core to see Cam suffering like this, but I knew I couldn’t shelter him from it, just as no-one could save us from this pain either.

Other children suffer the distress of feeling excluded, of living in a world where adults talk quietly behind closed doors and try to pretend everything is going to be alright. ‘Don’t they know we were best friends?’ said a 10 year old after her brother died. ‘Why didn’t anyone tell me what was happening?’ Eventually she wrote this poem:

Five weeks after her sister died a five year old told God, ‘You’ve had my sister long enough now, we need her back please.’

Belief in God or Heaven is perhaps more readily acknowledged when death is close than when life seems to stretch without limits. Nothingness after death doesn’t often seem to be an option. This belief gives way to many expressions: ‘Heaven’s like a lovely pub. You forget all about the things that make you sad. My uncle does anyway’—this at one end of the spectrum, to the Gospel-imbued faith of a 10 year old at the other end. To Garvan God was ever-present in ordinary life and often in conversation.

As I’m sitting here, I’m Garvan, right—but this isn’t really me, my body is just a reflection. When I die I will leave my body behind and that reflection will fade. But the real me won’t die. My real self will leave my body and will go up to God. At that moment when I die I believe Jesus will be standing right beside me with his arms out-stretched, ready to take me to his Father. Imagine the sheer excitement of meeting him for the first time!

Jesus said, ‘Don’t be afraid, I am the light’, and He is the Light; He shines, but we can’t see it, but in the end we will see it. You see, God has the answers, we have the questions, and only in the end, when we come to the end of our life, He will tell us the answers. He’ll have the answers.

Dying isn’t really dying. It’s just like opening an old door into a new room, coming from an old room into a new room, which is the place where you’re going to live; Heaven, where you came from. Where you came from you have to go back to. That’s your real home. I mean, we will all have to go one day, where it will be the happiest life of all. I mean, this earth is very happy but there are riots and things! But when we go into the other life, no sickness, no pain, no tears, just full of happiness and joy. I’m looking forward to that day. Heaven is so beautiful God can’t describe it to us. We’ll only know what it is like when we get there. I’m glad really that Jesus kept it a secret, because it will give us a surprise, it will give us such a big surprise.

And when I die, I do believe that Christ will look after my family and whatever they need He will provide for them. I shall always look down on them if I go before them. I will be there in the midst of my family. They might not see me, but I’ll be there, watching them, looking after them, all the time.

On Easter day, nine days before he died, I visited him and his family at home. He was sitting in a large armchair, wrapped up in a duvet, his face radiant and transfixed as he watched Alec McCowen recite St Mark’s Gospel on television. ‘I’ve always loved the gospel,’ he said, ‘but I’ve never seen anything as wonderful as this!’

I returned four days later. He was very sick and death did not seem far off. ‘Do I have to die now?” he asked. Foolishly I reminded him of all that he so genuinely and fervently believed. ‘Yes,’ he said, ‘but I love my family and my home and life so much, I don’t want to go yet.’ The next days were not easy. The transfusions he had referred to as his ‘life-line’ were no longer possible. He refused the medication prescribed to ease his physical distress in the belief that to accept it would be to hasten the end and, as a result, his suffering was terrible to behold. To the last he was concerned about everyone else’s well-being. ‘Are you all right, Frances?’

Garvan never lost consciousness. His struggle at the end and his agony of parting in no way denied his faith; indeed it made it more real, for in the torment of death he shared a little of the pain of the Lord he loved so much. Faith, however profound, is not an insurance policy against suffering. It’s just that God is somehow there in the very dereliction itself.

A few days ago a little boy came for his first visit. He has a brain tumour and his mother told me the specialist has told them he has a 17% chance of survival. Pale and listless, part of his head shaved of his golden hair with a red raw scar stretching several inches, it just isn’t fair. He should be bright-eyed and bushy-tailed like other toddlers of two and a half.

You never get used to seeing children robbed of the innocence, the hope and the expectancy that is their right. It is outrage every time. In our desperate attempt to make sense of it all people say, ‘He was so special, he was too good for this world,’ or ‘She changed so many lives in her short life’ or even ‘God needed another little angel.’ But these, added to all the other things we say, are not enough to explain the suffering of one child. I have fewer answers now than I had 20 years ago. All we can do is stand alongside as friends and companions, impotent in our unknowing. And I cling to the Incarnate God of self-limitation, of weakness, of seeming failure, the God of Gethsemane who entrusted the message of the love of God and the redemption of humankind to a few uneducated, common women and men, the God who died, and who showed us that there is life beyond death. ‘Put your finger here; look, here are my hands. Give me your hand; put it into my side. Doubt no longer but believe.’ Thomas replied, ‘My Lord and my God!’

Reading what I have written, I realise I have conveyed an almost exclusively bleak side to the suffering of children. I would be failing those children and their families if I did not give at least a glimpse of something else. In the very midst of such suffering the present moment is recognised as a gift: yesterday is gone, tomorrow is uncertain, but today is about living—living fully until we die. We begin to measure time in terms of depth rather than length. Friendships cross the usual barriers of age, race, faith, social background and education because what we share and experience are the fundamental truths of life and death. Values and priorities change. And in the immortal words of Kahlil Gibran: ‘The deeper that sorrow carves into your being, the more joy you can contain’. These are not pious aspirations. We are privileged to see them re-enacted day by day.

© Guild of St Raphael