How it all started and how it goes
(Text written for the Sunday School Programme of the Presbysterian Church in Northern Ireland in 1998.)
We first came to the hospital in 1988, in the autumn. We felt that hospital was an unnatural environment in which children hardly could feel well and we wanted to discover what could be done to improve it. We soon discovered, however, that it was not the environment which the children perceived as being most painful. They suffered from loneliness, were missing their families and friends, feared painful procedures and often felt uncertain about the hospital treatment’s prospects and about their own future lives. Part of their suffering was entirely unnecessary - we soon realised that life of hospitalised children could be made much easier and more bearable and that such an improvement wouldn’t have required either money or any special knowledge but just an open heart and good will. And we decided to do our best to help in accomplishing this.
Our contact with seriously sick children has virtually changed our lives. Our minds were suddenly confronted with new thoughts, new views and new questions. And all this became even more urgent after first of our new friends died.
Death is something we usually tend to associate with the elderly people. “He was old and ill and so he died” we say to our children if they ask why the old man from the neighbourhood disappeared and new people moved in. Well, of course, we know that also children can die - we often read about murders and killings and accidents - but these are all violent deaths, deaths we find possible as they’re so unnatural. But if a child dies from a serious illness and his death comes slowly and without any violence, if he becomes gravely ill despite his young age - then you feel you have to change the way in which you have perceived this world so far.
Many people see children’s deaths as acts of injustice on the part of the Providence. As a mistake made by the Nature.
We still ask many questions and are looking for many answers. But the years we have spent with sick children and their families so far have brought us - if we can put it so - closer to the Lord, have strenghtened our faith in Him, and have taught us that even the most painful and most puzzling happenings in our lives may eventually prove to be wise and helpful.
We know how insufficient our human knowledge is and how weak are our own human powers. We want to rely all the more upon our God’s guidance, and ask Him to use us as His tools. And we pray that we may be able to properly distinguish between His will and our own will - to know when our will starts to depart from His will.
Aleš was a very distinctive person. He was a boy of 16 when we met him first - he was lying in a hospital bed, calm and patient, reading a book. He seemed to be always calm and patient and always had books to read and things to talk about. His hobby was history - we remember him reading an incredibly thick book on the history of mankind during one of his long and frequent stays in hospital. He chose a healthy diet, was eating a lot of vegetables, drinking goat’s milk... Obviously, he was one of the active patients who care very much about everything that is being done to them, who want to be actively involved in the therapeutic procedures and are keen to do something themselves.
In 1992, we had our first summer camp. The campsite was a wonderful green meadow, surrounded by woods from three sides and open to a field by the remaining one. We lived in tents - some children in the big Indian tee-pees which can accommodate up to six people and have a fire-place inside, and some in “regular” little tents for just 2-3 sleepers.
At that time, Aleš was still under the treatment. He always had to spend a week or so in hospital and a couple of weeks at home but as he wanted very much at least to visit the camp, he got the permission from his doctor to spend 3 days with us. The doctor wasn’t sure if Aleš, weakened by his illness and by the long treatment, would be able to cope with the life in a camp.
And so he came. He slept with his friends in one of the small tents, enjoyed, together with us, bright mornings, hot days and soft, warm, magic evenings, beautiful summer weather, quietness of deep green woods, balsamic odour of pine trees. He walked with us to the sandstone rocks with its mysterious caves and holes and stairs - the rocks we were camping at have rather a funny name: Cat Rocks. We were drinking water from a forest spring, water that was ice-cold, sparkling and as clear as a crystal.
Every day, Aleš was walking down to the village to buy some goat’s milk from the farmers.
When the three days were over, he discovered he didn’t want to leave the camp and we would also have missed him badly. So our camp doctor went with Aleš to the village once more and together they phoned Prague, to the clinic. The hospital doctor was happy to learn that Aleš was happy and well and extended her original permission till the very end of the camp. Aleš’s parents also came for a short visit and the sunny days full of love, friendship and peace left a deep imprint in our hearts, remain in us as a happy and shiny memory.
Six months later, Aleš died. His parents remember their son with deep love and also with gratitude. They say that Aleš showed them what was important in life and that the entire course of his illness was a painful but extremely precious lesson for them, a lesson from which they’ve learned a lot.
And for us, Aleš was and is a friend whom we remember when planning our “open house” in the countryside, our children’s hospice. We’d like the place to give other people what our first summer camp gave to him and to all of us.
Vilík was a boy of ten years of age. We remember him wandering round the ward, keen to do something interesting.
Vilík lived in the West of Bohemia, in Karlsbad (which is a spa town famous for its cold and hot mineral springs) and before being diagnosed his serious illness, he used to be an excellent dancer who took part in numerous dancing competitions.
In hospital, where he spent many months, he always wanted to do something and he suffered from the fact that the range of “leisure” activities available was rather limited. He thus invited our frequent visits. Together with other children, we used to go out of the ward to make exploring tours round the hospital or to play games outside the hospital building. Once we even made a film, using an ancient (but genuine) film-camera: the film was about a routine day in the ward and children were starring in it as nurses and doctors. Sometimes we were bringing to hospital our old portable typewriter which soon became very popular among the children. They often were battling to win the privilege of being allowed to type for a while, producing “medical prescriptions”, lists of friends, letters, stories and messages. The same delight was aroused by an old camera and taking photographs also became a favourite activity. But many more things were welcome - anything that was reminding the children of the world “outside” and giving them chance to do something interesting and genuine. Various “sniffing” games, to mention just one more example, were widely enjoyed too: we were all seated in a circle with our eyes closed and were passing round several glass jars with various aromatic substances - with cumin, for example, which often reminded the children of their mums at home cooking potatoes, with sweet smelling vanilla sugar, with cinnamon etc., etc. How exotic such “homely” smells were in the hospital environment! And how easily they could trigger nice memories that were bringing the atmosphere of one’s home to the estranged settings of a modern teaching hospital! Such sessions were eroding the isolation and shattering the walls that separate the hospital world from the world of “normal people”.
We were very close friends with Vilík. We often discussed with him our “open house” plans and were listening to his hospital experiences. His narration helped us to understand more of the situation in which children in hospital happen to be and with which they have to cope. Then Vilík had to undergo the bone-marrow transplant. He feared that procedure very much and stated repeatedly that he wouldn’t survive it. He didn’t. Vilík died a couple of days after the transplant was done.
During the transplant children are confined to a sterile isolation box. Before the new bone marrow begins to develop, their immune system is almost non-functional. In the box, children are usually accompanied and cared for by their mother or father. Vilík shared the isolation cubicle with his mum. When he died, she phoned us from the ward and we came to pick her up and to help her with all her belongings. It was so sad to leave the hospital with bags full of Vilík’s things, with his coat, his shoes, his pencils...
The next train back home to Karlsbad was due to leave early in the morning, so we spent the evening and the night with Vilík’s mum. First we sent a telegram together to the father and then we sat in our flat drinking tea, one cup after another, talking and going through old photographs and through our memories. The mum told us the whole story of Vilík’s childhood and of his illness - from the very beginning to that bitter and unexpected end. This evening and this encounter were an important milestone in our work - we suddenly realised how important it is not to withdraw when the child dies, how helpful it may be to remain available to the family, to offer friendship and frankness and practical help which the family may then choose to accept or not.
And in Vilík’s case, we also felt more strongly than ever before that the child who had died didn’t disappear, that he didn’t cease to exist but that he had just moved, that he had just set for an unknown journey. And that parting with a deceased human being is as if you stand on the sea-shore and are waving to a departing ship. The ship slowly moves towards the horizon, gets smaller and smaller, and then she slips from your eyesight. And you have tears in your eyes but deep in your heart you hope in a happy future re-union.
Lukáš lived with his parents in the North of Bohemia and was about 2 years old when he was diagnosed cancer and when his treatment started. Lukáš was immediately sent to a specialist hospital in Prague and he soon underwent an operation. This meant, however, that he had been separated from his parents and had spent more than a week without them. You can imagine that for a little child his mother and father are the whole world - they are his home and it’s with them he feels safe and protected. For Lukáš this was an extremely hard and difficult time and when his parents were allowed to see him again, they found him crying and desperate. They decided that, from that moment on, they would never leave him in hospital alone. So they started to look for accommodation and they soon found our small and humble self-help hostel for parents who wanted to be as close to their hospitalised children as possible, and they moved in.
Unfortunately, in Czech hospitals parents usually can’t stay with their children in the ward overnight and have to leave when the evening comes. Lukáš, like many other children, was extremely unhappy about it and eventually started to refuse to sleep in the ward without having his parents at his bedside. Fortunately, he was soon allowed to take the treatment on an out-patient basis and his parents, despite all the practical difficulties, simply took him away from the ward in the evening and came back with him in the morning. In the beginning, they all used to sleep at our parents’ hostel. The facility, however, was often overcrowded and thus unsuitable for a small sick child. But as the boy and his parents desperately wanted to be together, they then slept in our flat, not far from the hospital.
Lukáš was, despite his young age, quite an expert in cars - he knew nearly all car brands by their names and was able to recognise them in the streets. He always carried with him a ruck-sack full of toy cars. From time to time a toy car happened to fall under the bed, unnoticed, and in such a case the family phoned us immediately after the disappearance had been discovered: “We are sorry to bother you but Lukáš is missing a white Peugeot. Have you found it? Would you be so kind as to keep it for him till our next visit?” Even today we have on our fridge, stuck with two pieces of Blu-Tac, the traffic lights drawn on a piece of paper - a tool Lukáš used to use so much during his visits to us.
Now Lukáš is well and healthy, has two younger brothers and as a “proper oldest brother” is very attached to them and very protective of them.
There is one more interesting bit to be added to this story. In some parts of our country, there is a habit of planting a tree when a new baby is born. Lukáš’s father had planted a lime tree and, when Lukáš became ill, the lime tree started to suffer also and was turning dry. When Lukáš recovered, “his” tree recovered with him and today it is as green and strong as a young lime tree ought to be.
And every year, in the summer, the entire family (no matter how young its newest members may be) come to join us at our camp - at least for a couple of days.
A CLOSING REMARK ABOUT BEING IN HOSPITAL
When you come to hospital in our country, you suddenly realise that you have entered a strange world, a world of its own rules, a world which differs radically from all what you have been used to so far. You discover, for example, that there are no pleasant things to touch, nice things to smell... You start to miss all the little things which you have always found to be so ordinary, so plain, nearly dull... And you start to learn how precious, how wonderful, how miraculous every day is, what a gift it is to be with your beloved people, to breath freely, to simply live and work, and even to be exposed to all the little troubles that might have seemed annoying in the past. In hospital one often starts to properly distinguish between what is really important in one’s life, and what’s worthless and useless and misleading.
Prague, June 11th, 1998
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