House on the Road
In summer 1997, Czech Television decided to make a 60-minute documentary film on the Klíček Foundation and its work. The following text was selected from interviews used in the film - the aim of this selection is to introduce our hospice project to our English speaking audience.
The first time we came to this room, we were shocked to find this part of the house in a horrible mess with damaged and damp walls, as you can see even now. These damp walls will have to be pulled down and re-erected. What you can't see now is the terrible mess, all the rubbish that virtually filled these rooms - we have already cleaned it up with our volunteers.
The house looked different when we came first. It was all hidden in bushes, messy and we told ourselves: "Well, this doesn't seem to be the right place." After a while, however, after we examined the house from the cellar to the attics and after we felt the very special atmosphere of the building and its surroundings, we realised it might be a good place. You know, our project of the "open house" and of the children's hospice has been maturing for more than seven years and the ideal building, in our imagination, has always resembled a farm, a village house. The school building, obviously, was different, but surprisingly our original plans started to adjust to it, to grow into it. We often think of our friend, a protestant priest, who says: "If things don't go my way, they go the better way."
The disposition of this house enables us, potentially, to do even more than we originally hoped to. It's as if the building was waiting for our plans and ideas to accommodate them. We've discussed our vision with the architect, we've told him what the house should offer in the future and he - in an incredibly short time - incorporated it into his project.
The project is not only tailored to our needs, but it preserves, at the same time, the atmosphere and the appearance of the house.
The school is big and spacious, which is a real advantage. And it's a school, which is an advantage also, as schools invite people to learn new things, new skills, new ideas. The hospice building where the sick children will stay and be cared for, will have to be purpose-built next to the school, in the garden - we were given a big garden together with the school building. The school building itself, with all the activities it is going to offer, can be opened also to "people from outside" from time to time - we plan, for example, to run various courses here, say, to train volunteers, playworkers, counsellors, carers... We hope the school will become a kind of island, giving people time and opportunity to learn something new, to think, to talk and to help.
Our intention, of course, is to help sick children and their families, but our work shouldn't be narrowly targeted to offer care only. Many families with gravely sick children suffer from social isolation, their friends and relatives often feel embarrassed and do find it difficult to approach them, to be in touch with them. We'd like to help in building bridges among "healthy" and "ill" people, in pulling down the walls that prevent people from being together.
So, the school will accommodate a library, video-library, study room, gymnasium, workshops etc. that will be available to children and families staying in the hospice unit, if their condition permits, but also to "healthy" people who might wish to come.
In the attics, there will be four single bedrooms and a dormitory for guests. The reconstruction of this space will be rather demanding - according to the project, for example, 23 roof windows are needed to bring in the daylight - but it's worth the effort.
The roof, as you can see, is badly damaged and needs to be replaced, it's the first urgent priority. To raise money towards the roof repair, we started to sell gingerbread roofing tiles. We baked roofing tiles from gingerbread, enclosed an information about the house and the hospice project with each of them, and then we sold them at the Christmas market for the price of a regular big roofing tile. Now we can buy enough tiles to cover the roof but the roof windows are rather expensive. Maybe we'll have to bake some gingerbread roof windows.
When people hear the word "hospice", they often imagine it is a place to die. It should be, however, a place to live. People who join us for the "working weekends" are sometimes surprised when they meet former cancer patients, children who have been successfully cured and who help us as volunteers now, and hear them talking about what sick children experience during the course of their illness. The working weekends usually are fun, and people who join us can see that the ideas are slowly and gradually being brought to life, and are not depressing. A children's hospice is far more than just a place where one can "die comfortably". We'd like the house to enable the families and their sick children to live normal lives - as much as possible and as long as possible.
Well, eight years ago, when our work started, when we started to visit a paediatric cancer ward in Prague, we were in touch with children who were either under treatment or even cured. At the beginning, we had no idea that so many children die. The cancer treatment itself is very hard and demanding, and even the cured children have many problems to cope with, and so we wanted to offer them a village house, a place to rest and recover. Those days, we found ourselves somewhat prejudiced to the idea of a children's hospice but, after some of our friends died, and after we got in touch with dozens of their families, and learned more about Helen House in Oxford, we realised how helpful and important a hospice for children can be.
Many people think that once the child has been discharged from hospital as an "incurable patient", his life is, in fact, of no worth. They say: "He's got just a couple of weeks or months left, he can't be cured - so what meaning, what importance can the rest of his life have?" But the child lives until he dies, and the entire span of his life is extremely precious for him and his family. The smaller the number of days left, the more the family realise how important, how precious each of them is.
You know, these things are difficult to talk about, people usually don't want to hear about it. It seems to be more rewarding to support the healing of patients but there are many children who cannot be healed in medical terms. Such children and their families happen to be in a very difficult, in a very hard situation. Just imagine the parents take their gravely sick child from the hospital, go home and begin to take care of him. They often are alone, the caring becomes more and more demanding, more and more exhausting. The parents have many fears and many thoughts they need to share but often have nobody to talk to frankly and openly.
This is where a children's hospice can help. You may try to help the family by giving them opportunity to rest and relax, to sleep as much as they need, to "recharge their batteries". You do the caring, you do the cooking, you make yourselves available to them and ready to meet their needs. The whole family is in a friendly and home-like settings, in a place which doesn't resemble hospital at all. This is also important.
I think that any work which aims to help other people must be based on personal contact with such people, on listening to them. They themselves will tell you what they need. Such work is far from any speculations, far from any unrealistic ambitions. One just has to be with the people and must get rid of the assumption one knows best what the people need and want. One just has to be silent...
(Texts were selected from interviews with Jiri and Marketa Kralovcovi, founders of the Klicek Foundation.)
Prague, 15th April, 1998
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