They have such a short life to live

They have such a short life to live …(Im zhizn otmerila tak malo)

It might be pleasant to feel like a magician especially when you can see the results of your “magic”. There are quite a lot of cases when people make good deeds and hope to see the results of their efforts. Of course when one donates money to a kid’s operation or treatment and expects the kid’s recovery it’s noble, pleasant and natural. But there are cases when you know beforehand that all the efforts will be in vain: even if a kid feels better it’s temporal, because there is a diagnose which you can do nothing about. One knows that but doesn’t give up anyway. One just keeps hoping, believing and helping without much hope to see the results of one’s efforts. One just does what must be done. One author wrote “Courage is when you know beforehand that you will lose but in spite of everything you keep struggling. You seldom win but sometimes you are a winner.” In this article I’ll tell you about four really courageous women. Ordinary women who are used neither to honours nor to praise and who are inclined to consider their courage to be just help and care of those who have lost. As for victory in their case it takes place very very very seldom unfortunately.

The Mogilev children’s hospice was founded 5 years ago. Only four women have been working (though this word isn’t right in this situation) in it. Lilia Ivanovna Sudilovskaya is the head, a bookkeeper, a psychologist and a manager, Svetlana is a doctor, Valentina and Natalia are nurses. At the moment they are taking care of 18 children (their number is changing all the time, some children die, new ones come) You should know who these children are. All of them are ill with cancer. They’ve done several courses of chemotherapy, have been operated a few times, spent a few years of treatment in Borovlyany (the republican oncological hospital). Unfortunately most cases are incurable. The doctors have done what was within their power: they provided a proper course of treatment, support and help but they are not magicians, they cannot do wonders. Finally the kids and their parents are at home. In fact they are alone. Sure they are consulted by pediatricians, oncologists. But you know how many other patients they have. So parents can get help, support and just talk about their grief only with each other and with the hospice workers.

The initiative to found the hospice belonged to an Irish charity organization “DONEGAL A.B.C.” Before they decided to take some care of children ill with cancer they had helped the people suffered after the disaster at the Chernobyl nuclear power station. Lilia Ivanovna says the Irish had serious requirements to the hospice personnel. They wanted the hospice workers to be relatively young, quick learners. The headmistress of the hospice was also concerned about the choice of her future colleagues. She wanted them to be kind, professional, responsible. She tool into account medical qualification though she thinks not every doctor or nurse can work there.

These words are confirmed by Valentina, one of the nurses. She says, “It’s difficult to work here first of all psychologically. We remember all the kids. They become very dear to us. Working here differs a lot from working at a hospital when you know your duties perfectly well.” Don’t be surprised, all the medical personnel of the hospice work here part-time. They have their full-time jobs in other places. Lack of finances prevents them from working at the hospice full-time. Sometimes they spend 24 hours a day taking care of the kids. On average they visit every family 2-3 times a week.

The only person for whom working at the hospice is a full-time job is Lilia Ivanovna. It’s a pity that even working hard it’s beyond her power to fulfill everything. She says, “ In the afternoon I work at the hospice solving the problems. In the evening I do paperwork at home typing documents, letters, etc. The hospice takes practically all my time because I have to do almost everything myself. Sometimes we are obliged to do things which have nothing to do with the hospice work. It may concern a garbage bin near the building we rent or electricity. Our doctors and nurses also have plenty of problems. To begin with they visit families at their homes so they have to go around the city almost every day. As they have no their personal cars they use public transport and pay for it from their own pockets. I am ashamed to ask the Irish for money for it. When we go to see the kids we always bring something for them, sweets, a toy. It’s also at our own expense. Another problem is when some people want to share their harvest of fruit or vegetables with the kids and their families we have to look for the transport or ask the parents to transport it themselves. It shouldn’t be like this!”

There is no doubt that the kids and their parents look forward to visits of the hospice workers. They support the families, help them to overcome pain and suffering. During the years of the disease both parents and kids have lost their old circle of friends. New friends have appeared with whom they have a common tragedy. Many of them had to give up their jobs to be able to take care of their children. Nothing else interests them. They hurry to give a kid everything they could have given during his or her life. Unfortunately not all families can go through these difficulties together, some of then break up. Lilia Ivanovna tells me about one ten-year-old boy who was very attached to her. When asked about his family he answered seriously like an adult, “I live with my mum. We have no dad. When I was in hospital in Borovlyany my mum was with me all the time while dad was seeing another young woman. Once he came to see me with her. Now I do not want to know him anymore.” Of course there are exceptions in this situation.

While I am talking with the hospice workers I’m looking through a photo album. There are pictures of the kids. Different pictures, kids with their mothers, with the hospice personnel smiling and on the contrary extremely sad. They are all remembered here, what character they had, what they liked and how many days they spent in hospice. Lilia Ivanovna shows me a picture of a girl. She spent only two days with them but they remember her with love. She wanted to live so much. When she was in Borovlyany with her mum they did not waste a day, went to the circus, on an excursion, to the botanical garden. Her mother is an orphan so they loved each other very much.

I can’t help asking Lilia Ivanovna if there are miracles and children recover. And she tells me about one girl who came from Minsk. Doctors said Lena had a few days to live. When she was brought to Mogilev she could not get up feeling really badly. And then a miracle happened. She began getting better. She could even visit a charity concert held by volunteers in the downtown. It’s unbelievable progress. But in these cases no guarantees can be given. Only facts matter and the fact is that the girl is living. The girl is very cute. She’s brought up by her relative because her mother was deprived of her parental rights. The woman tries to spoil Lena from to time as much as she can afford it. She bought her a doll’s pram, a dress the girl asked for. Like any child she likes to play, to dress up. Kids are kids, even if they are incurably ill. And they dream of the same things their peers dream of: toys, gifts, friends. When Mogilev Roman Catholic church and the Drama theatre had a charity project kids were asked about their wishes which were made true later. One boy told about his wish to have a parrot. And he got a parrot. Though at first his parents objected to having a bird at home because they had a cat already. The hospice workers say that now they have even become friends. Once Nabokoff wrote, “Hurry to spoil kids. You never know what future they will have”. As for these kids I’d like to say, “Hurry to spoil them”. Unfortunately such presents can be their last ones. Lilia Ivanovna tells about one more case. When her Italian friends came to Mogilev they visited the hospice to meet its personnel and the kids. One boy Andryushka by name couldn’t come as he was feeling very badly. So they came to see him. While talking to him the Italians found out that he collected toy cars. In particular he liked BMW models. So they decided to make him a present and asked Lilia Ivanovna for help. She dropped in many shops around the city and finally found she’d been looking for. But it was a collection model and cost about 100 thousand roubles. In spite of it the Italians bought it, money was not important as they said. When they brought the car the boy’s health was really poor. If you could have seen his eyes! Right after their visit the hospice doctor came and she called later almost crying, ”He’s holding the box with the car in his hands.” Later the boy’s dad assembled the car which became Anryushka’s last toy.
In general as the hospice workers tell there are quite a lot of sympathetic people. Mostly they are common people who have neither particular power bor much money. Young people, students often help.The hospice personnel would like to thank students and lecturers of the Economics Department of the Belarusian-Russian University. They make special projects at the University and then show performances for the kids and make presents for them. Some people just come and bring something for the kids, others like to play with them. Especially it’s touching when help comes from a person who makes both ends meet himself (usually pensioners). For example the hospice gets 7 thousand roubles on their account on the 12-13 of every month. Maybe it’s a pensioner who gets his or her pension on this day. Maybe it’s a considerable sum of money for this person but he or she has been doing it for several months. Thank him or her for compassion and sympathy. Once an old woman called, she had no money to help with but she wanted to share jam she’d made herself with the kids. One old man, a former teacher and ill with cancer himself brought some books, exercise-books and offered … his help. The hospice have good friends, they are their volunteers and common people. Among them there is a young man about 30 years old, he’s got his own firm. Once he told, “I’m not a magnate, I have not much money but if you need something ask me for help without hesitation.” All these people don’t expect praise or thanks, they just help as much as they can.
At the same time the hospice workers have faced exceptional indifference. Lilia Ivanovna cannot forget the situation when she asked the director of quite a big company for a trifle. After there had been some repair in the hospice building she wanted to have a good door lock. She failed to find a proper one in the shops and applied to the director of the company who could easily solve the problem. She left her written request in the company’s office. Some tome later a secretary called to find out about the hospice. Lilia Ivanovna told her a lot about it, about the kids. But after that call there was complete silence. Then Lilia Ivanovna decided to get in touch with the director herself but he hardly listened to her and said he could do nothing for her. It’s interesting that later an ordinary worker of the same company helped the hospice to get a lock. Lilia Ivanovna says, “Every time I face such indifference, selfishness I cannot help crying. How can we live? How can the kids and their mothers live surrounded by such hard-hearted people? By the way there are young people among them who have only started to live.”

Really how will we live? At least we will live and they kids will die, these kids who have learnt in their short life what real pain, grief and indifference are.

Natalia Gorovtsova

P.S. Dear readers maybe some of you would like to help the Mogilev children’s hospice. Children ill with cancer and their families need money, special medicines and vitamins, diapers, food, clothes, toys, sweets, books, stationery. Finally these families need help in organizing funeral services.
The hospice’s address: 212029, 24 Gabrovskaya street, Mogilev.

The bank account:
получатель ОБО "Могилевский детский хоспис", резидент Республики Беларусь,
УНП 700838750,
расчетный счет BY30BLBB31350700838750001001
в Дирекции ОАО «Белинвестбанк» по Могилевской области, г. Могилев, ул.Первомайская, 29 а,
код банка BLBBBY2X

Telephone: 45-32-84, (029)320-43-13
Tel./fax: 8-0222-48-53-34