Translated material
Clothing dragon
“When to call us? Maybe when Vanya is sleeping? For shooting, after all, you need to keep the phone differently. And with the interview different, right? Then you can just cry, ”says Vani's grandmother. But it does not cry
We help the prospects to helpVanya lies with her grandmother in the hospice on the planned regime - a simple test of the body that needs to be arranged once a year so that there is no deterioration, his grandmother Natalya explains. Until eighteen years, a children's hospice in Pavlovsk, and then a complete unknown, but it seems like an adult hospice is being built near Pushkin.
Will there be improvements, I do not ask.
Vanya took with him his favorite dinosaur. His hands work poorly, and his grandmother plays with him. And draws together - a hand in his hand.
Lying here for three weeks - enough time for all games. “What are you, this is not torment, this is such an exhalation,” Natalya convinces. - Divide. Resort".
Natalia is not crying.
Ordinary life
Vanya is eleven, and he has a severe form of cerebral palsy with multiple violations-this is if in case.
Outside of the “resort” Vanya lives an ordinary life, and this is a big grandmother’s pride: he goes to school, albeit at home schooling, but he gets out with her grandmother several times a week for two to two and a half hours. And additional classes: pool, music therapy, hippotherapy , canisterpers ...
Vanya photo: Anna Ivantsova for TDVan is good at school. His teacher is a psychologist with whom the family met in the organization of prospects in 2015. Natalya recalls: then the “prospects” simply opened the eyes that there are schools for children like Vanya. “ At first we got into their daytime center - I was then looking for where to go to Vanya to class. She did not know anything then. I have three healthy children, I have grown already. And I did not know with such children as communicating. How to change it correctly? How to keep a spoon? They say to me: "You do not worry, we will help with the school." And I: “What school? We do not know anything! There are no schools for such children!” ”
Then, five years ago, Vanya stayed with his grandmother. First for a while. And then forever. Vanya has mom, you don't think. But I did not see him a long time ago, although he lives in a neighboring apartment, in one staircase. It happens.
Family
Vanin dad, Natalin son, died in a car accident, even when Vanya was just about to be born. The daughter -in -law gave birth. Natalia remained nearby: the grandson! She helped, took it for the weekend and vacations. At home, Vanya was just lying, and Natalya understood that it was wrong. I tried my best to study, I was looking for ways and specialists. And in Vanina for five years, the daughter -in -law came with the words “Take it to yourself. By proxy. It is necessary to build a personal life. ”
Natalia, of course, was waiting for support, she thought that she just helps the daughter -in -law for the first time. Even quit: Well, how to combine work and Vanya? The daughter -in -law handed over to Natalia a mother -in -law pension through acquaintances, but never came. Even on vanines, birthdays.
Vanya photo: Anna Ivantsova for TDAll five years, while Natalia had a power of attorney, she waited. And when the term began to come to an end, she began to act.
“I thought that this power of attorney would end and it would be necessary to return it to her ... But how? After all, she will neither treat him, nor to develop, she does not even know what Vanya the medicine takes, where to take it to classes, how to deal with him at home. The child grew up without her. I said and guarded: do you, make her love Vanya? If she is returned to her, it is how to hand over Vanya as in the storage room. ”
And my mother did not fight for Vanya. And Natalia received a complete custody. They see on the stairwell - the door of the door door. Natalia just stands with Vanya in her arms, waits for her. No one greets.
I ask if it was difficult for Natalia to take all the vanines of diagnosis. Natalya says: She accepted right away.
“Well, what, well, that means it is necessary. These children do not need us, but we are. And we have no right to betray. After all, if you do not help, do not teach, do not pull up, it will remain completely helpless and will remain. We must engage in, pull, not give up, ”she says with conviction. Her task is to give the grandson everything that can. Not to pull on the professor-to give it, but still every day to continue to continue classes. Although the professor is - Hawking, recalls the famous scientist woman.
“They often say this, you know: I live once. So after all, everyone lives once! And everyone leaves his mark, ”says Natalya.
Vanya and the world
Vanya drives in a wheelchair. The state usually prescribes such strollers that sometimes can not be moved without disability: uncomfortable, heavy, clumsy-and torture in them. He was in that stroller for the whole curve, Natalya recalls. And there are good ones. In which you can not suffer, but live. Here, for such a stroller for Vanya, the partner of the “prospect” from VTB Bank helped to raise money, although Natalya did not even hope for help. I thought: who needs us.
Vanya photo: Anna Ivantsova for TDVanya loves a lot of things in this world: horses, walk, curious, cars - most firefighters, with stairs and lights. And also music. Especially if they sing! “We are all the events so,” Natalya laughs. “If they don’t sing, let's not go.”
The boy is ready to listen to modern music and classics - even opera. And he and her grandmother somehow went to listen to the singer Zara. We sat close to the stage - and where will you squeeze with a stroller? - And in applause, she took Vanya by the hand.
He liked it.
He was twice in the camp from the "prospects". The first time returned angry, sulked for two days, recalls Natalya. I was indignant. But the second time - the banged returned, hardened, "spoke in his Tarabar language how they went to watch the birds." “He understands bird singing, you know? He recognizes them, birds, and loves very much. I visited excursions from the school. ”
And Vanya loves the sea and patiently travels south by train. It is impossible on an airplane: epilepsy, dangerous, there may be an attack from pressure drops. You can’t even in the subway. So they go around the city with their grandmother only on land transport. Three types for the trip sometimes have to be changed. In transport, says Natalia, tries to be strict: "So, quietly, not squeal." Now Vanya can withstand, and when there was a spastic , it was difficult to ... But they did not give up.
Vanya photo: Anna Ivantsova for TDHow is it - take it and locked it at home? For what? “ We do not refuse life,” says Natalia.
Natalia has a fifth floor. Vanya has a thirst for feeling and recognize the world, a clockwork dragon and a very cool stroller - as a means of cognition of the world. But on the fifth floor, Vanya Natalia carries on her back.
Thirty vanine kilograms and another backpack of food. There is no elevator. The neighbors were allowed to leave the stroller below. And you can’t leave Vanya alone - the nimble became. At home, a daughter with the kids, but she is not up to the supervision of Vanya, and he is alone in the room "can still bring some kind of tarrars."
We must grow up
Natalia does not complain. If only, he says, the “prospects” have not disappeared. You would, say, see how they communicate with them respectfully. How attentive to everyone, so what that the little person does not say - but they communicate with him anyway! And they also made such costumes for the holidays, the real magic ones, they played the theater ...
Vanya and Natalya Photo: Anna Ivantsova for TD“You have to grow up with such children,” says Natalia. - See how he is changing. What turns out, and what is not, and tell me how to help. I am twenty -four hours nearby, I do not see him as they see from the side. And from the outside they say: what Vanya became talkative! Darkly, with his own desires, the choice makes it himself, it says, I want it either. Red today or blue. Thawed like a Snow Maiden. "
First, grandmother had to pull everything on intuition. He whimper - is Vanya frozen or hungry? Or wants to sleep? Or something hurts? And Natalya was taught a lot in the “prospects”: to hear, see, understand the features. To communicate with the grandson in his language.
The woman quietly adds: “You just don’t write about Vanina hard, okay? For the best that it happened. He would sit on her fifth floor, what would he see ... We will assume that it was noble on her part. I could not cope. And so many good people help me! They made a stroller Vanya.
And I also have girlfriends, I’m not alone: one has a lying mother, the other has a child like Vanya. So sometimes I leave them together. I can go on business quickly or to my son in a cemetery. I no longer have a son - but there is a grandson. And I look not at those who throw such children, but at those who live with them. In the hospice, we see each other regularly, we know about each other, we see who is pulling. And also in the center of daytime stay from the “prospects”. There Vanya remains himself, one - and everything is in order with him. And you know what I think? All mothers would be such help as me: how much easier it would be. ”
Vanya and Natalya Photo: Anna Ivantsova for TDNothing ends with the eighteenth birthday - a family with children like Vanya should lead all their lives. Please support this invisible work outside. So that Vanya saw the world outside the room in a five -story building, even when a new stroller will grow up and need. So that Natalia could exhale not only in the hospice. And so that mothers and children receive the necessary help.