You cannot give it to

Even one child with disabilities is hard. Tatyana was able to educate two boys with cerebral palsy and now dreams of opening the center of accompanied residence for other families

We help the prospects to help

She gave Slabin only once. At the age of 12, the boys began a puberty. Seryozha screamed for hours long, fought his head against the wall, breaking it into the blood, ran around the room day and night. It was not easy with him before, but it was impossible to endure further. Seeing how his brother was tormented, Vitalya scored into the farthest corner of the room and did not want to react to anything.

And Tatyana realized - that's it. I can't go away anymore. I give up. As in a fog, I went to a boarding school. The best in St. Petersburg, as she was prompted. They discussed for a long time how to leave Seryozha here - for a year, no more, so that you could take a breath at least a little and for the first time in twelve years, finally, and finally, and vital.

Twins

In recent years, Tatyana spent with Seryozha. Mom is always with someone who is more painful - and this is not the choice that you make yourself. And if intellect was preserved after the birth injury, Seryozha remained at the level of a small child.

Now the Gemini has been left for the age of majority. Vitalik is a phlegmatic and closed teenager, sits on the phone for days and tries to compose poetry. Seryozha is noisy, shouting, he hardly holds a spoon and did not learn to ask for the toilet. Vitalya tries to walk, relying on the walls. Seryozha still had to buy a wheelchair. Vital is taken to a correctional school every day, and there he is bored, because it is too simple. Seryozha speaks individual words only when he is very scared or painful. Vitalya loves Seryozha very much and helps mom when he can. Seryozha respects his brother: only he does not take away food and a remote control from him.

“Laid completely until she got down. But you won’t break for two. If there was more time, if you could double yourself and have time to have everything! Maybe Vital could be better to socialize and live a full life, ”Tatyana complains.

Tatyana photo: Ekaterina Rezmaya for TD

With the boys I had to sit in four walls around the clock. Health completely failed: because of constant severity-the guys were soaking out! - the back and joints were constantly sick, the eternal insomnia drove crazy. The three of them even less often managed to go out even on a simple walk near the house: barely holding on their feet, the twins interfere with the balance and their mother.

The doctors, barely seeing Tatyana, said right away: you can’t get by with the medicines alone. “With a child like yours, a year has been going on for two. And since you have two of them - then at once in five, ”the therapist spread her hands.

And Tatyana closed more and more, went into herself. I felt terrible unclaimed. I burst into books: I read excited about the Second World War to see-yes, people were even worse, but somehow withstood. Having laid the children to sleep, she sat at night on endless forums, coordinated the work to search for missing front -line soldiers - just to be useful.

But then there was no strength left even for this. There is only one desire left: to go to bed and do not wake up the next morning. “Why be afraid? Death? Last court? Even if I get to hell, it will be easier for me there. At least you suffer yourself, and do not watch how your children suffer. And after all, these years - the most productive, when both smart and young - all flew into the pipe. "

On one such evening, Tatyana caught herself on the only distinct thought - how did I want Seryozha to pass away before her so that it could be worthily to spend him to the next world. And it became so scary that she decided - better a boarding school. Yes, with the Habalized nurses, with the indifference of the staff and the absence of any kind of study, but at least in warmth and with food.

Seryozha and Vitalik Photo: Catherine Frushing for TD

Then it turned out that a boarding school, recommended, as the best, also very in demand, to wait for at least two years. And Tatyana breathed a sigh of relief - if she had to give the boy right now, she would still not be able to. And a forced delay has become a pleasant self-deception-now the son is here, nearby, and after a couple of years, maybe everything will improve somehow. At least some image of the future.

Family

All previous years of the future was not. Once there was an ordinary life, carefree and complete hope. Tatyana moved to Petersburg from Riga, where her father served, in the mid-90s. She graduated from the legal, entered the service of the clerk at the Ministry of Internal Affairs, read books on history and dreamed of becoming an archaeologist. She married a sensitive, attentive man, even a church. At twenty -eight she gave birth to twins from him - Vitalya and Seryozha.

Immediately after birth, the kids got into intensive care. They could go out, but Seryozha survived the clinical death in three months. When the boys turned a year, the doctors finally confirmed - children's cerebral paralysis. And the stigma on Seryozha - "do not learn."

“Then did I understand that it was? When I saw such children on the street, I always went around them. I have excellent genetics, everyone lived up to 90 years, and there were no harmful habits, ”Tatyana recalls. There was a total, crushing unknown ahead: there is no Internet yet, and the doctors spoke contradictory. He will be able to speak or - no, he cannot. He will walk or - no, it will not.

There were no good rehabilitation courses. There was nothing. At some point, the husband quietly went to work and did not return. Tatyana tried to get through, finding him is useless. After many years, Vital himself will find dad on social networks and write to him - “You think that we are subhuman, but we are still your children. Although you do not consider us children. " “You live in sorrows,” his father will answer him highly. “I have nothing to talk about with them,” he will tell his ex -wife.

Vitalik, Seryozha and Mom Tatyana Photo: Ekaterina Rezmaya for TD

The first three years were especially difficult: Tatyana did not get out of hospitals, tried to do something with the boys, wrote the last plans, taught the alphabet and score. It was always necessary to be at home with children, I had to quit from work. Former colleagues first came in, but then stopped. The neighbors bashfully hid their eyes, accidentally colliding on the stairwell. But most of all, the indifference of relatives was most painful. Cousin - grew together, passed fire and water - now a big man in the arbitration court. You won’t wait for a visit: his wife does not want to see how “wretched children” crawl around the apartment. Only the parents did not turn away. Yes, they cursed, fell into both a daughter and grandchildren - after all, also young, there are still fifty, but such a burden. But they remained to the end: Grandfather, as he finished the service, went to work as a guard, just to stretch his family. At home, as best he could, he replaced his father’s children - he played with them, talked.

When the boarding school was told to wait two years, Tatyana began to look for any other possible way out. And finally found it - for several years now Seryozha took a volunteer from the St. Petersburg Charitable organization “Prospects” for children. The “prospects” have a “guest house” project - a special apartment with volunteers and social workers, where you can leave a child or adult with disabilities for several days.

Vitalik and Seryozha Photo: Catherine Rezmaya for TD

And Tatyana decided to leave Seryozha for two weeks in the “guest house” to go to the sanatorium. “I escaped from this hopelessness. For the first time I felt not an application to the child, but by myself. I don’t recognize myself: I go out at five in the morning, warm, birds sing. And I understand: here, at least a little freedom. You type it as much as you can, and give it to the child. As mothers need happy children, so children need a happy mother. ”

Further every year Seryozha spent at least a few days in the guest house. He really liked it - he was also tired of always to be in the same place with the same people. Tatyana went to the theater several times, went to Novgorod to visit her brother and the wedding and - met a new man. Tatyana has been together with Andrei for several years, but does not seek to crucify. “He, of course, is strong, the athlete is the same to carry our boys,” Tatyana laughs. “Only I see that it’s difficult for him.” But I strictly do not judge. I don’t know yet, I could have accepted someone like that in his place. ”

Future

Now Tatyana is most afraid of the age of majority of sons. All existing opportunities now - for a small person with disabilities. And no one needs a large person with disabilities except his loved ones. Therefore, Vitalya Mom really wants to marry: it is true that even in the communities of the same guys with cerebral palsy he is silent, hesitates and does not communicate with anyone. And Seryozha ...

“Here, you are a baby, everyone rushes with you. And since you are just an adult disabled uncle, no one needs. You will get sick - no one will stand in the blood to help you. It will happen to me that - they will throw him into a boarding school, like in prison, for many years, and the end with the end, ”Tatyana is worried.

Many times they told her that it would be better if the boys were not born at all. But who was to decide? If Seryozha was born, then it was necessary. Now he is visiting the children's boarding school only two to three times a week, and the rest of the time lives at home-with his brother and mother. Thanks to the constant support of the prospect.

Seryozha in the center of daytime stay

“Often they tell us that we are embittered by life, hysterical mothers. We sit only at home, take care of our sick cubs. But now I feel respect for myself. I knew from the very beginning how hard it would be, suffered and laid out in full. I have nothing to blame myself for. I myself have changed - before there was such a bunny, always cautious and indecisive, and now I can much more: to stand up for myself, and break through all the doors. ”

Tatyana knows what he was talking about - she managed to ensure that they were given a new apartment with the boys not far in the Leningrad region, but in a good area. Although for this I had to achieve a personal meeting with Governor Poltavchenko. Now Tatyana is ready to help others the same as her. Having talked with the “prospects” and the employees of the “guest house”, Tatyana realized that he wanted to promote in Russia advanced projects of accompanied residence for people with disabilities and take on all the work with the state.

“Indeed, officials like blind kittens - they do not know anything about how to treat the disabled. They have money, and they even spend money on something. But how would they explain that money is spent wrong? We and other mothers of such children are ready to do everything ourselves. ”

The main thing is that we are not put before this choice: either a boarding school, or sit and rot alive in your room

In the immediate plans, open the center of the accompanying residence so that there, too, you can leave your children for several days, and not part with them forever. There is already a room, registration has been received, it remains only to achieve assistance to the authorities.

If, when the boys grew up, there was such an organization as a “guest house,” says Tatyana, everything could be different. Without endless fatigue and the most terrible - loss and unknown. “I was always silent about some holidays and meetings about my children-I was afraid that I would get into the category of losers who did not have life, blamed myself. But now I understand - this is my achievement, my pride. It remains to change the attitude of society towards such children and mothers. ”

“Guest House” is a unique project for children and adults with disabilities. When the project only opened, not many people knew about it, and each family could leave their child for a week. Now the turn is always filled three months in advance, and the “guest house” is very lacking in the resources. Since the beginning of the year, he helped 62 families. But in support in St. Petersburg alone, hundreds of families need.

For many parents, it is the opportunity to leave the child with those who can be trusted is the only opportunity to stop being a hero and live like an ordinary person at least for a short while. The “guest house” works completely at the expense of private donations, for example, every two hundred rubles transferred - this is an hour of remuneration of a social worker. Please support the “guest house”, because not all parents are as strong and patient as the heroine of this text.