The most monstrous act

Ekaterina Krongauz recorded a monologue of her mother, who took her child with Down syndrome from the orphanage 4 years after birth

We help mine and my mother’s school collected 1,695 939 r required 1,660 171 r

The collection of funds is over

Monologue: Daria Fitina

It was 2004. I am 30 years old. I have the first long -awaited pregnancy. I went to a regular antenatal clinic. Nobody ever offered me screening, and I did not know anything about him. Everything was fine, the doctors had no questions. Once on an ultrasound, some specialist told me that he sees a heart disease in the child. And I ran to Bakulevka, made a bunch of examinations of everything that was possible there. They said: “All garbage, everything is fine” (although then it turned out that there was a vice).

At the eighth month of pregnancy, the husband left, not because of the child, we then knew nothing yet. I lay down with hypoxia in the hospital. But again, no one then said anything bad about pregnancy or child. Then I gave birth, they said that everything was fine, nine out of 10 on Apgar. I called my mother and sister, said that everything was fine. And an hour later I called them and said that they say that a child with Down syndrome.

Doctors called genetics, began to ask something, look, there is also a special shape of the ears of such children. They did not put her to my chest, they gave it to see simply, and they immediately took it away.

And the confusion began. Doctors began to come to me and say: “You can’t imagine, you will mumble your life, you will be attached to the child, the child will not be able to.” And plus to this, the husband, who has left. Well, I did not receive mass support from the family either. I am not making excuses, I just tell you how it was.

It lasted for some time, a few days. And the doctors convinced me that in no case should I start feeding. Although I fed her once all the same. And then they told me: “No, do not feed”, well, in the sense that you will be tied now and will not leave.

They took another analysis. He was preparing for some time. And they said: "You go from the hospital, and then you will decide." Then the ex-husband came to the hospital and asked for some reason whether she could have the ability to mathematics. Apparently, he was not delighted with mathematics, as with everything else.

And a week later, both of us wrote a refusal. But I once went there more than once because I passed a genetic test, he passed a genetic test. We both have normal ones, that is, it is not a genetics, it was the stars like that. Or ... well, in general, the Lord God decided so.

And yes, and we wrote both of the refusal. And all.

I did not know anything about it or found out. I was in some absolutely somnambulic condition. Everyone said: "Refuse" I had to twist this quote in such a, absolutely no, depressed state due to the fact that I was left alone. Actually, before that, I was already in it at the end of pregnancy. And here is completely in poor condition. And, in general, I committed this very monstrous act in my life. Doctors then said that the girl would not live for a long time, she could never do anything herself, sit, stand, eat. But this is not important, in any case, I made the decision. What it was caused by - the pressure from others, the general situation, my depression ... whatever it is, this is still my responsibility.

And then I periodically somehow traced her fate-the hospital, the house of the baby, the house of the child, but never visited her.

I did not know or recognized anything about it then or later. I was in some absolutely somnambulic condition. I walked, smoked, ate something mechanically. She didn’t google anything, and no one was googling anything to me, I must say.

Everyone said: "Refuse."

It was very bad for me. And colleagues, friends - no one directly asked me anything. They knew that I had any troubles with the child, but what exactly, no one had ever asked me. They knew in the family, knew friends, close friends. No one directly condemned me, did not say: "And you look, think." These words in general I did not hear from anyone at that moment, except, possibly, her sister, but she also worried about me and was afraid to overpower.

I don’t remember what I thought and felt then. It was bad, yes. And it was bad for a long time. And even when it became better later, it still hung on my heart. But despite this, I did not go and did not take it right away.

This is very difficult - I was tormented, but I did not take Nastya. And it’s hard for me to explain how I feel about this. If I took her then, I might not have a youngest girl - Sasha. That is, fate is fate. But the fact that I have lost these four years in the deck development is a huge omission. Because in these four years it would be possible to make a bunch of everything, given how Nastya developed later.

My old friend saved me. We had a novel to my husband, then we parted, and I got married. Then he appeared back after four to five months. He took me somewhere, talked to me, somehow took me out of this state.
I told him that it was terrible, that I committed such an act and that I threw a child. But he did not invite me to go, to visit or pick up, he simply comforted. And then I became pregnant, and this topic no longer arose.

It was generally a closed topic in the family. Nobody talked to me on this topic. I don’t know if I wanted to talk, but I thought about it a lot.

Some more time passed, my daughter Sasha was born, and when she was not a year, her dad died, drowned. And I decided that I was taking Nastya. I realized that one close person died, I refused another - these things were absolutely contacted with me. I rode from the funeral and made a firm decision that I was taking it.

***

The first time I went to Nastya and began to visit, draw up documents. When I took her, she was already without one month for four years. On the first of November 2008, I took her.

She was in a pretty sweet house of the baby, there people were quite pleasant, and the conditions, in general, are not bad (well, I mean in comparison with what you sometimes hear and see). But they told me: “What are you! Are you crazy? Yes, she will never be able to never. ” She did not walk, did not stand, did not sit, she was in such reclining, drank food from a bottle at four years old. She did not say a single word, did nothing. They told me: “What are you! She can never eat herself. ”

This, of course, is idiocy that they say a lie. And there and in the hospital. It was all simply not true. Why do this, it is not clear, from what reasons? What is this concern for the neighbor? I, in fact, no one to them. Why do they need to have a child there in a lying state and drank from a bottle instead of living at home, and that it is all my problems, and not them, I do not understand this installation.

In the child’s house and in the maternity hospital, people should be focused that parents take their children. But we have a completely different installation It seems to me to twist this quote , on the contrary, both in the child’s house and in the hospital, people should be (and doctors first of all) are focused on the parents to take the children. But our installation is completely different.

As I later understood, they decided that I want to get some benefits. And about the benefits, I also did not know at all. And when they realized that I was not doing this because of the benefits, they generally horrified.

In general, then, in the process of paperwork, I began to read about Down syndrome. I read about the TsLP, I read about Dawnside AP, in general, some articles about children with Down syndrome.

When everyone issued, it turned out that, despite my refusal, I was not deprived of my parental rights. And it turned out that officially we have been parents all this time. Therefore, it was just a decision of the guardianship authorities to allow me to pick up my daughter from the child’s house. The ex -husband did not understand why I am doing this, but, we must give him his due, he began to help him since then, for which I am very grateful to him.

I went with my mother to pick up Nastya. All the way home, Nastya yelled like a cut, because she was first fastened in a children's chair from behind. But in general, at first she yelled all the time, no matter what you do - combed or soap. She screamed all the time. That is, all this for her was some potentially hostile actions, apparently.

And so I brought her home and found that she could not drink from other bottles. These maternity nipples, which put on a bottle, are a completely special shape, they are not like our nipples. She can neither drink nor eat except from this nipple. In the morning the next day, I stuck urgently to the hospital, and they gave me these nipples with bottles so that she could at least somehow eat. And gradually we began to learn to live together.

***
At first it was not easy - with food, with classes, she completely had no squeamishness in relation to poop, for example. And how many of these situations we had when you go into the room in the morning, and Nastya is all smeared. All. The bed, she herself is so smeared. All this, of course, was very unpleasant. And she simply does not have this threshold of disgust. But now this has not happened for a long time.

She had, of course, completely huge. Nastya screamed, did not want to do anything, she is a terrible lazy person. It was a battle so that she crawled, got up, she had to force her to sit straight. But however, now Nastya walks, eats perfectly, talks, studies at school. It is impossible to imagine what would happen if she was at home from the very beginning.

In general, when I already decided that I was taking her, I was no longer scared, I understood that it would somehow be, it would be normal, there would be nothing wrong. I did not have the thought that I have gone to hard labor, as I was told. I had a completely different feeling that it was right. And I still have it. Despite all my anger, the rage of both girls is periodically when they bring me. I still have the feeling that everything is absolutely natural.

When I realized that she was already getting up, walking, starting to speak and so on, I found a kindergarten of an inclusive type where she went. Then the question arose about the school. Although at first they told me that she was unsuccessful. Fully. So it was written in the medical card, I don’t know why they decided so and why they wrote whether they taught her at least something. Then we went to the commission, and at some point they wrote to us that yes, they can study. But they told me that we need to look for a school of eighth type, correctional. Maybe I also have an obsolete impression, but I categorically did not want to go to a school of eighth kind. Moreover, I phoned all the schools of the eighth -type of our area and was even more convinced that I did not want to.

I don't like rudeness at all. And to give a child to a place where they talk so rudely, and even more so where you cannot control, since this is a completely closed institution, I did not see any sense.

I began to find out then what else is. And found our school, inclusive. I wrote a letter there that, of course, from the street, I understand that no one would come from the street to them, but now, could it be discussed somehow? They answered me. Moreover, they called back and said: “Well, what are you, what are you! Come. Let's look at the girl and you. ”

I arrived with Nastya there. Nastya had an interview there, they said that a wonderful girl, that they were sometimes brought to them in general, who should be carried from one class to another in their hands, and Nastya is simply wonderful, and they will take her with pleasure.

Well, they took Nastya, and now she is in the third grade, she can read, and it’s better and better. She can write. Yes, crookedly, but can write. It can be considered in a certain framework. She is praised even in English, they say that she knows a lot of words. Nastya is still going to school with a nanny, a nanny as a tutor in this case, because she cannot yet. But this is because Nastya is lazy now - she has to force her to study, she is reluctant.

When we acted, they showed me a girl, she seemed to be in the seventh grade with Down syndrome. She completely comes out on her own completely, and in general a pleasant cute adequate girl. We are still far away, of course.

Nastya got into a regular class, and there are different children. Including eastern ones. Here are the oriental children, apparently, this love is vaccinated in the family for the weak, and for the eldest, and the younger ones. They perceive Nastya as the youngest and treat her well. That is, no: everyone treats it well. No one lifts her.

There were two characters in the class, according to which, it can be said, a correctional school cries. Absolutely inadequate children who throw, yell, rush at children. Well, Nastya got it. That is, it is not because, again, that it is special, but simply because they treated everyone like that, and Nastya had something to mock.

Nastya was called to the board and let her solve a simple example. And Nastya decided. And the whole class applauded her Twist this quote , but now even they stopped doing it. And moreover, at the end of last year, Nastya was somehow called to the board and gave her some simple example to solve. And Nastya decided. And the whole class applauded her. Well, that is, they are well done there.

This is a useful thing for everyone. Sasha’s girl with Down syndrome also studies at Sasha - not in her class, but at school.

Of course, Nastya is not an ordinary child, and this is not a fairy tale about how everything was bad and it became good. But Nastya is my child. And everything was wrong, but it became right.

But there are problems, of course. We still can’t find that Nastya would be interesting-she can do a little bit, she clearly likes the music, but not for long, she likes to drive by car, but you won’t travel for a long time.

***

I have never encountered some aggression on the street. No one took his child from the playground, but I can’t say that I am most comfortable. I can’t say that I got rid of it. At first, Nastya walked with her mouth wide open and stuck in her tongue to the navel, saliva could flow. This is very unpleasant aesthetically and, of course, a feeling of constraint appears.

These are my internal complexes. But now they sometimes arise for me, because Nastya is insanely curious and eager to hug everyone, she is a very emotional child, and this is not pleasant for everyone.

She is my dear person, a child, of course, dear. And it causes me joy, and tenderness, and anger, and rage, like, in general, all other children.

Parents have a normal relationship with Nastya. Of course, not what could be, but there is no rejection. But this is also all because of these four years. If the baby grew next to them, it would be different. But it turned out that their daughter, whose husband died, remained another infant in her arms, takes it unknown in what condition of the child. Again, they also knew little about this. If I took her from the very beginning, I think everything would be different.

***

In many ways, I made the decision because I did not understand anything. Everything that they said was terrible and not true, and no one said anything else. I think that it would be enough for me if someone came to the hospital, who would track the birth of children with Down syndrome and give some brochures, would tell, show some examples that there are families with such children, children study in schools, may, they may not, this is not a tragedy with whom you can live calmly. And he would say that I am not alone, and if I have problems, that is, people and places that will help me. I think that this could be very much affected by my decision. Very much. But this is again my story, my decision. But if you can help people not make the most terrible mistake in life, with which they will not be able to live with, then this is always good.

In Irkutsk there is a center “My and mother’s school”, which helps families in which a child with Down syndrome was born. Helps to accept the child, teach and socialize him. Already, the center helps 40 families. In 2016, the center would like to help 100 families with children with Down syndrome. In order for the center to exist for at least a year, so that several children leave the maternity hospital with their mother, and do not stay in him forever, you need to collect money for the work of lawyers, psychologists, and defectologists and the equipment of the sensory room that helps children develop.

Do you want us to send the best texts of “such cases” to you by e -mail? Subscribe to our weekly newsletter!