On a December morning, a minibus trudges out of town. Stops by a pine forest. The driver mutes the radio singing about unhappy and fleeting love: "Here. Get out." Opposite - the pointer of the children's cancer center.
Alien and own
A girl of about six is walking along the path with her father and briskly tells him something. They roll a small suitcase behind them. Not far from the entrance - a woman with a gym bag is talking on the phone and asks the boy running around not to fuss. I don’t want to ask the parents taking their children to the oncology center how to get to the children's hospice, so I go to the help center.
The polite and friendly receptionist explains that you need to go back to the road near the forest, turn left at the local cafe, and turn left again near a large puddle (it is an important sign here). Ten minutes later, a gray fence is visible. Behind it is a low, bright building with a signboard "Lesnaya Polyana". The Belarusian Children's Hospice and the Republican Clinical Center for Palliative Medical Care for Children are located under one roof.
In the lobby, I am met by the director of the hospice, Anna Gorchakova. Active, lively, smiling. Any Internet search engine will tell so much about this person that it will be possible to write a book without even meeting her.
Director of the Belarusian Children's Hospice Anna Gorchakova
By the way, recently the documentary filmmaker Galina Adamovich made a very touching and powerful movie about Anna. The tape "Alien and Own" won the international charity film festival in Moscow.
What is habilitation
I came to the beginning of the rounds. The staff has little free time - I have time to talk to one of the nurses for a short time.
Irina Zueva talks about work and patients on a soft, cozy sofa in the corridor. She has been in palliative for six years. Each day, in addition to being busy at the hospice, she has two home visits scheduled. 27 children are assigned to the nurse.
Each of their parents can call Irina at any time of the day. It is important to feel that you can always turn to a specialist for help, advice, rely on someone's competence.
"Sometimes it is not easy. Children and adults are different. Fatigue and resentment are expressed differently in everyone. Some of the parents withdraw into themselves, the other will swear loudly, scream, scandalize. You just have to listen, give the person the necessary attention. And, naturally, to help the child, "says Irina.
Nurse Irina Zueva has been working in palliative for six years
Most of the hospice wards are children with incurable diseases. Small patients with genetic disorders, pathology of the central nervous system. There are contraindications for their rehabilitation in ordinary clinics. For example: profound mental retardation, immobility, severe tone and hyperkinesis disorders. Behind all these medical terms are difficult diagnoses, sleepless nights and hectic parenting days.
For such patients, there is habilitation in palliative (treatment measures aimed at effective adaptation to the life of people with disabilities - Sputnik). The joint work of parents and doctors sometimes works wonders. Little patients with unfavorable prognosis begin to hold their heads, eat independently, actively move, and sometimes speak.
"Yes, they will never become ordinary children in the understanding of the majority. But they may well be happy and give happiness to others. I have asked myself many times why, why a child with special needs is born in a particular family. And I concluded that he teaches their parents' absolute love, tolerance ", - says Irina Zueva.
At the morning meeting in the hospice, the condition of all patients, including those who are at home, is discussed - parents are in touch with the nurses 24 hours
"When it covers, I allow myself to cry"
It takes a parent, on average, 2 to 5 years to accept that the child's disability will remain and the diagnosis will not be removed. Over the years, adults often try to "break" the child. They take him to painful physiotherapy and change specialists. Time passes, but little progress. Adults feel helpless and guilty.
“Once in the trolley bus I gave way to my mother and daughter. Some woman sitting next to me began to be indignant that the girl was already an adult, she could have stood. Mom and the child began to make excuses, then took out some documents, told that her child - a disabled person with problems of the musculoskeletal system. Why did she make excuses and to whom? She and her family owe nothing to anyone, her child is beautiful the way he is, and certainly has nothing to prove to anyone, "says Irina.
Irina has two grown children. She loves to read, in the summer she goes to the country. She is absolutely sure that she is in the right place, she feels needed and happy, although sometimes she gets tired, and sometimes, she admits, when emotions are overwhelmed, she allows herself to cry.
“All of our employees, all of us, are damaged to some extent. After all, it is impossible to completely abstract, not let other people's problems pass through ourselves,” says Anna Gorchakova about working days.
The new building of the Belarusian Children's Hospice was opened last summer
Don't include "Mother Teresa"
A psychologist works with each of the nurses, with the hospice doctors, all undergo compulsory supervision. The staff is 32 people (two men, the rest are women). The adaptive and protective capabilities of the human psyche are not unlimited. In the West, it is recommended that medical personnel working in a children's hospice change at least an institution every five years. This is also a kind of burnout prevention.
"Only those who see the glass as half full and not empty should come to this sphere. People with a pessimistic attitude towards life have nothing to do here. They will not only not help others, they will harm themselves," Anna is sure.
Another important feature is the ability to work in a team. Some may have a pattern of behavior that Anna calls "Mother Teresa." They are convinced that they will cope with everything themselves, alone, because this is their mission. Sooner or later, a person cannot withstand the load and breaks down. Such mistakes are costly.
“Once our employee volunteered to help the family of a seriously ill child. The parents took him out of the hospital, they wanted to be there during his leaving. And at the most difficult, crisis moment, the nurse was confused. And when the mother asked to call an ambulance or not, she recommended calling, as a result, the child died in intensive care alone without parents "- says Gorchakova.
Little Kira is used to coming to the hospice and enjoys working with its staff
Another mistake is to give yourself completely to work. Such people quickly burn out, lose the opportunity to recover. Most often we are talking about women. They are so involved professionally that they have no place for a family, personal. According to Anna, such employees become not resourceful, cannot support themselves, miss a lot and, as a result, feel unhappy, and then blame the work for this, although they themselves made it the main part of their life.
Just recognize us as equal
During our conversation, the doors of the room where we are sitting now and then open - visitors come to the director. While Anna is deciding work issues, I am examining her office. This is a small corner room. On the shelves there are small figurines of angels, icons. On the wall at the entrance - a toucan on a branch - a drawing signed in children's handwriting. Documents, books, several unassembled boxes.In all these objects there is a sense of the presence of many people - with their despair, requests, sometimes humility and gratitude.
"Our patients do not need pity. This is often said. But even volunteers do not always understand this. They see such a child and let's hug him, feel sorry for him. Oh, how unhappy you are, poor. You don't need this. Just talk, talk, ask. Be sincere, do not lisp, do not be hypocritical, but show interest, participation ", - continues Anna, If earlier mostly students came to the hospice as volunteers, today they are more mature people.
"This tendency cannot but rejoice. After all, for young people, cooperation most often ends with graduation from a university. Adults are more constant. Besides, their decisions are more conscious," Gorchakova says.
Dozens of wishes and dreams of patients and visitors are suspended from a tree in the hospice lobby. Everyone believes that they will definitely come true.
Ahead are the New Year and Christmas holidays, which means all kinds of charity events, to which the children's hospice also joins, - here they are always glad to help and participate.
“Nevertheless, I do not really like all this action activity. You see, the work should be systematic, systematicity is important. Many people today use our name, and for me, as a leader, it is important to maintain the provision of hospice all the time. so that we are recognized as equal partners at the state level. We do not need help, just equalize us in rights with state institutions, "Anna continues.
Gorchakova has big plans and dreams. She enthusiastically says that she would like to open a Palliative Center for Young Adults. She says that she is very grateful to all those who are not indifferent, who contributed to the construction of the building for children.
"If we all together can implement another important project, the world will become a better place for everyone," Anna believes.
And something tells me that her dreams will come true.
I walk back to the bus stop, around - the same Belarusian December with melted snow and puddles. But this winter has gotten better, for me personally. Thanks to Anna Gorchakova and the staff of the Belarusian Children's Hospice.