Novye Izvestia has more than once published the stories of Lida Moniava, an activist, co-founder and development director of the House with a Lighthouse Foundation, about her young pupil Kolya, who has been confined to a wheelchair since childhood. But recently an extraordinary event happened - Kolya's mother was found, a woman who, while still in the hospital, abandoned her son. Lida spoke with her in detail about how and why this happened:
“I asked Kolya’s mom how Kolya ended up in the boarding school and how it happened that they hadn’t seen each other for 12 years. This is a story not about Kolya alone, but about 15 thousand disabled children in Russia who do not live at home with their parents, but live in boarding schools. There are 1,500 such children in Moscow alone..."
Here is what Kolya's mother said:
HOW KOLYA WAS BORN
I was 23 years old, my husband and I were expecting a child and carefully prepared for his appearance. We chose a maternity hospital - so that there were good reviews, so that there was children's intensive care. We bought a stroller, crib and baby stuff. We paid for the doctor who was supposed to accompany the birth in the hospital. At the perinatal ultrasound and examinations, everything was fine, the baby was absolutely healthy.
Early in the morning on May 22, my water broke, my husband and I arrived at the hospital. I remember everything that happened that day every minute. Doctors stimulated labor, burst the bladder. When the attempts began, they put me on a chair, at that moment the contractions stopped abruptly. I saw the midwife and the doctor exchange glances, and the monitor, which showed the baby's heartbeat, began to beep.
The baby's pulse slowed down every second. The doctor shouted at me: “Give birth! Come on push !! " I lost consciousness. She regained consciousness, tried to push, and lost consciousness again. The midwife pressed on my stomach with the words: "I'm afraid!" Several doctors rushed in, made an incision and took out the child with their hands.
It was very quiet. The child did not cry. They put it on the table and started doing some kind of manipulation, heart massage. I got an injection and passed out.
I woke up at 5 am from a child's cry. I got hysterical because my child was not around. Probably, these are hormones, because at that moment I had absolutely no thoughts that something was wrong with Kolka. I knew that there are difficult births, sometimes children are taken to intensive care. How serious this is, I had no idea and found out about it not on the first or second day. I lay and cried. The nurse came and told me not to worry, the doctor will come at 10 am, he will tell and explain everything, take me to the intensive care unit, I can see the child. I remember how infinitely long time passed from 6 to 10 in the morning.
From what the doctors in the intensive care unit said, I understood absolutely nothing. They spoke in a complex medical language, and I did not understand what all this meant. Due to extensive hypoxia, a hemorrhage occurred ... Among my friends there was no one with a disability. I didn't even know what cerebral palsy was. I was very far from the topic of diseases. I had only one question for the doctors: “What do I need to do? Maybe you need money? Maybe you need to move him to some other hospital? "
The doctors talked to me once a day in the morning for several minutes. The rest of the time I was in the ward. Neither the midwife nor the doctor who paid for the delivery came up to talk to me. I didn't know what happened at the time of delivery and how serious it was. I couldn't eat or drink because of the stress. Milk came, I was sitting in the ward, pumping and pouring milk into the sink.
It was possible to stay in intensive care for only 5 minutes once a day. I remember how I stand and watch Kolya, so small, lying all in tubes and wires in the incubator, everything picks, everything is sterile, it was impossible to even touch him. The rest of the time I walked along the corridors, stood and looked out the window of the intensive care unit, but everyone was driven from there. Once I saw how the priest was baptizing a baby in the next room. I caught this priest, asked him to baptize Kolka too. He was in a hurry, everything was very fast. We chose the name Kolya for Christmas. Nicholas the Wonderworker is a very strong saint, we wanted him to protect our Kolka.
I saw how children in other incubators moved, gagged, and Kolka just lay there. I began to ask the doctors: “When will Kolya be able to move? When can I hug him? " The doctors answered: "Not soon, not soon." Only then did I suspect that something serious had happened. Husband, dad, mom, everyone called me at the hospital, no one understood anything, and I could not explain anything. I told my husband that nobody comes to me and nobody explains anything, apparently something happened in childbirth, but nobody says what exactly. The husband called the health department with a complaint to the hotline, and from there they called the hospital. I didn't know about it.
HOW DID REFUSE
On the fifth day, a delegation suddenly entered my room, several heads of departments. Then the first time they talked to me normally. They said that during childbirth, Kolya entered the birth canal incorrectly, his shoulders were stuck, my contractions stopped, Kolya had to be squeezed out, this led to an injury.
The doctors said that I was very lucky that I stayed alive and they saved my life. And also that in such a situation, the uterus could burst, and I would never have children again. About the child, they said that in this case they recommend refusal. He will have a very low quality of life, he will be very weak, sick, he will not live long, a year or two. It will not be possible to leave such a child on its own, the care he needs is possible only within the walls of special institutions. Unfortunately, in Russia there is not a single institution that would help such children in families, we have such a state, nothing can be done about it. But there are special places where such children are kept. Therefore, I need to sign a paper - refusal.
I lay on the hospital bed in complete shock. Two professors, heads of departments, a woman and a man, sat in front of me and said that I should sign a waiver of my child. I asked them only one question: "Isn't it a sin to leave the child?" They said, “No, not a sin. It happens, it happened, nothing can be done about it. " They said that if I do not leave this child, my husband will leave me, my family will break up, I will no longer have children. And so I can get pregnant again in six months. They advised me to sign a refusal and pray, thank God for the fact that I survived and that I might still have children.
They left the room, I stayed. I imagined how my husband was leaving me, how I was left alone with a disabled child, that I would never have children again, that my whole life was continuous torment. At that moment, something inside me clicked, closed, and I suddenly realized that the only way out of this terrible situation was to do as they said. Write a waiver and get pregnant again six months later. I need to give birth to a healthy baby, I need to give birth to more - this thought seemed to me the only salvation from the horror in which I was.
I asked the doctors to tell the same to my husband. My husband arrived. We went up to the director's office, there were again two heads of departments, they again told the whole story. They also said that they were very sorry that they had canceled the law on the refusal of resuscitation actions, which operated under the Soviet Union, because there would not be such seriously ill children if doctors were not obliged by law to resuscitate unviable babies.
The doctors said that in this situation we have one way out - these are special places created by the state, where such children can be, and the state takes care of them. We ourselves do not need to do anything, all the documents will be prepared by the maternity hospital lawyer, we will just need to come in a few days to sign the papers.
I asked: "What are we going to tell the rest of the people?" They replied: “Don't say anything, who cares. You will say that there is no more child. "
MOST WRONG DECISION
When you are 23, adult professors are sitting in front of you, and they tell you how to do it right ... They said so - we know better, we are medical workers. Due to the brainwashing, I could not soberly assess at that moment whether I was doing the right thing or wrong, what would happen next. I jumped at the advice these people gave me.
The doctors said that the sooner we sign the waiver, the better, otherwise we will get used to the child and will no longer be able to do it. Well, that's all. We arrived at the hospital. There was a lawyer uncle with papers. You sign and leave ...
Since childhood, I have been praying and talking with God. But when everything happened, I stopped doing it. I had a very strong rejection - the child was supposed to be healthy, but he was deprived of everything from the very birth, how can this be with children? Everything seemed so unfair to me. On the other hand, I felt that I had done such an act that now I never again have the right to turn to God with anything.
It is difficult to describe the state of a woman after such childbirth. A state of grief and passion. It seemed to me that half of my body had been cut off. That I don't have an arm or a leg. It was as if a piece of the body was opened from me. I couldn't eat, I didn't feel the taste of food for about a month - neither salty nor bitter. I couldn't leave the house, I had a lot of fears, I was afraid that I would be lost. I didn't understand how I was going to walk, because half of me was gone. These feelings feel terrible, the strongest grief. Everything that happened did not fit into my head.
When a parent abandons a child, it does not become easier for him, this is a big delusion. This is unnatural, this is a huge trauma. To abandon the child is not a way out of the situation; on the contrary, it is even worse. It destroys you from the inside out. There is an illusion that after giving up the child, the parents live a calm life, but this is not so. It just kills you from the inside. The woman with whom all this happened feels like nothing. A small ant in a big world. You cannot help your child, you cannot do anything, everything has already been decided for you, you are nothing.
Parents should not be advised to abandon the child.
We tried not to talk to anyone on this topic. Those who asked were told that our Kolka was no more. Died. This was the most wrong decision. It's very bad to do that. If you lied once, you cannot say tomorrow that you no longer have two, but three children. Sometimes there is no turning back. This should not be allowed initially. The element of falsehood is very heavy. Even if you leave your child in a boarding school, it is better to tell the truth. You can't say that there is no child. It is very hard to live with this burden later.
MOM DOESN'T NEED TO GO THERE
I felt like a leper. I am to blame for everything, I gave birth badly. The psyche is so structured that you either go crazy, or chop off inside yourself, close this topic and get hung up on something else. For me, such an obsession was the idea of having another child. I felt that if I didn't get pregnant soon, I would not survive. Six months later, I became pregnant, my son was born.
When my son was one year old, I slowly began to come to my senses. I realized that we need to find Kolka. We need to find out what happened to him. We called the hospital. They said that they sent him to the baby's house. It was incredibly difficult for me to call there, I was shaking all over. I called. The woman replied in an icy voice: "First, go to custody." I asked if they had Kolka. She replied: “Yes, there is such a child. He's the hardest. " I asked, how is he there? The woman replied: “I will not tell you anything. If you want a visit, go to custody. "
My husband and I went to care. We were given a bunch of papers - it turned out that in order to visit a child, you need to go through a medical commission, a dentist, a neurologist, a therapist, pass a bunch of tests, do fluorography, vaccinations. When a woman in custody opened a business, I accidentally saw Colin's photo there ... He was so small and so pretty. I got hysterical, I was crying and could not stop. The woman from the guardianship looked at me and said: "You go there right now, maybe they will let you in."
The orphanage was not far from the custody. We came there with my husband. I was all crying. A woman in a white coat came up to us and said: “Mom doesn't need to go there. We will show only to dad. Let Mom stand here, and you, man, we will see you. " They took her husband to Kolka for 3 minutes. They said: "Here is your Kolya." He stood next to the bed, then they took him out.
Perhaps, then, psychologically, I was really not ready to see Kolka, I was very scared. I thought that when I saw him, I would fall, I could not stand it, I don’t know how to explain. I was very afraid. I thought, if they, doctors, think that it is better for me not to see, they probably know better that I will not stand it.
I asked the doctor at the baby's house, what if we took Kolka home? They said: “What are you, what kind of home. Such children are not for the family. Every 3 months he goes to the hospital and receives injections for seizures. Even if you wanted, it would not be given to you, this child is not for home. Calm down, he's good with us. "
At the Children's Home they said that we can no longer come. That we are only disturbing our souls. Kolya still does not see anything, does not hear, does not understand. That he is the most difficult in their institution and very sick. They said that they would write down our contacts, and if something happens, they will call us.
I asked what we can do, maybe we need to bring something? The woman doctor replied that they would have only one request for us - to bury him when Kolya dies. I don't remember exactly how she explained, it seems that the state does not allocate individual graves to orphans, and they are buried in common graves. The doctor said that this is not Christian, and it would be good if we bury Kolya ourselves. We said yes, of course, maybe there is something else we can do? She said nothing else.
It somehow became easier for me when I heard from the doctor that Kolka at least did not understand what was happening to him. I created such a picture for myself from her words - Kolya does not see, does not hear, does not realize anything, and therefore does not feel unhappy. More unfortunate I am - they ripped out of me as if a piece.
My husband saw how hard it was for me and said that he would take it all upon himself. He himself will communicate with the orphanage and tell me. He wanted to isolate me from all this. He then went to the orphanage several more times. In boarding schools there is still a situation ... For a person who is not accustomed, far from this topic, it is really all scary, or rather creepy. My husband said that until you get to Kolka, you will see so many disabled children, all are sick, you still need to get to the Kolka ward.
When we called for the first time, and then arrived at the orphanage, we felt a little better. We felt that we had taken some step - we found the child, declared that we were his parents. Through a terrible shame, through a feeling of guilt that we gave our child to strangers. It was very scary inside to take this step, what will they, these people, tell us? Suddenly they will be condemned, suddenly they will say: “You gave your child, what do you want now? Bye!".
Once the husband called the orphanage to find out how Kolka was, and he was told that Kolya was transferred to another boarding school. Time passed, it was even harder psychologically to call strangers again, go through all this again. We reassured ourselves that we left contacts, and if anything, we will be contacted. Well, they lived, lived ...
Parents never spoke to us about Kolka. Even with my husband it was difficult to talk about this topic. You live in a routine, more children appear in your family, over time you begin to look at everything that happened already as if from another world. Sometimes we sat down and said - we ought to call Kolka to find him. Yes, I ought to, I also think about it ... Probably, he is no longer alive ... We were told that he would only live for a year, or two, but how much time has passed ... So we lived with the feeling that, probably , the son is gone.
10 years later, we had another child. Once I saw that my husband was not himself. I asked what happened? He said: "Imagine, we, you and me, have been sued." A new law has come out, according to which parents who abandoned their children must pay child support. We received a letter from the new, already third boarding school that Kolya is alive and is with them. A month later, another letter came that the boarding school had filed a lawsuit against us for failure to pay alimony.
We started paying child support. All our communication with the boarding school was about alimony. Here is the decree, here are the papers, you must pay. They said that people were servants, then the state checks them, they should receive alimony from us. Although this money is still not spent later, it is simply kept on the child's book.
Once a month my husband sent checks to the boarding school and asked how Kolka was doing. They answered him: "No change." Every month we asked the same question and received the same answer: “No change. All the same".
Nobody invited us to come to our son - they did not forbid us, but they did not invite us either. It seems that they themselves did not see the point in this. It was so easy to say: “Don't be afraid, come, let us introduce you to Kolya”. Only once in the boarding school there was an open day, my husband was invited to come to see Kolya. A doctor in a white coat brought him to the bed and said: "Here, look, here is your Kolya." The husband stood there, stroked Kolka, looked. Such meetings are very formal, under the gaze of doctors to stand at the crib of your child ... After that, then it is very hard.
It seemed to me that this whole story was from a bad movie, not about me. I was so worn out mentally over the years that I went to a psychologist. The psychologist says - you will come to your son. I say: "I have not seen him since birth, I probably can not." She says: "Just come and sit next to him, you need to come to him." I thought to myself that she was abnormal, this psychologist, I would not go to her again.
After 11 years, I began to pray again and ask God for help, because it was a kind of vicious circle. I don't see Kolka, nor does it get any easier for me. How this situation could change, I could not even imagine. How? There was a feeling that it was a dead end.
And then they called us from the boarding school and said that some woman was taking Kolya away. I felt that since all this began to happen - first the trial, alimony, then this call - I needed to come to Kolka. Maybe he has been waiting for me all these years. It suddenly came to me by itself that I must overcome fear, step over the inner child (when we are afraid, we turn into children) and become an adult. It is unnatural and wrong to hide, this is my son, and I must see him.
When I went to the hospice, everything inside me was shaking. I didn't know what would happen to me when I saw my son for the first time in 12 years. I was preparing myself that I would faint or that my heart would stop. In the car, I asked my husband to let me see the pictures of Kolka. I saw him for the first time. Very much like me. Our son. The way it should be.
I remember asking you if it was possible to touch, you said "yes, of course, this is your child." I was happy that I could touch him, hold him. How grateful I am, no words can convey this. My life has turned from head to foot, and for me it is incredibly important. I stopped being afraid of Kolya's disability only when I began to come to the hospice, began to immerse myself in this topic and realized that there was nothing wrong with that.
Every time I leave Kolka, I always think how lucky I am. No matter how hard and sad it is for me, now is much better than before. I think all the time that I could never see Kolka.
The rest of our children will definitely know that they have a brother. But I don't know when, how to tell them, for me this is a very difficult question. I myself just accepted the idea that I have another son. I'm just starting to talk about Kolka after 12 years of silence. My biggest fear is that other children will stop trusting me. They will say that since mom gave Kolka, it means she can do the same with us. I need to understand everything from the beginning to the end. Not much time has passed since the summer, and I am not yet used to it all myself ... I am afraid to undermine the trust of my children, because their mother did this.
I told my own sister the truth only recently. I thought that if I told someone, I would share my burden, relieve my soul, and it would not be fair.
There are a lot of us
A person is not immune from anything. We went for a lot of money to give birth to a healthy child in the best maternity hospital in the district. Parents who leave their children are not villains, they are scared, ignorant people, bewildered by the advice of well-wishers. There are a lot of us like that. Not everyone is dysfunctional or indifferent, we are just frightened people left without support. All our life then we are tormented by feelings of guilt, shame and helplessness.
The problem begins with a maternity hospital, they reanimate an unviable child, who will then be disabled and will not be able to live without outside help. Is it humane?
The staff of maternity hospitals, hospitals consider it in the order of things to offer and strongly recommend abandoning the child. Grieving parents are told that this is the only reasonable option. But what kind of proposal is this, what kind of option is this? Why do doctors suggest this, who are they to suggest such things? Why do doctors say that the husband will leave the woman? Why do they say that instead of a sick child, you can give birth to a new child?
Simply taking sick children and hiding them in boarding schools is not an option. Do not produce boarding schools, give support to parents.
In the maternity hospital - for someone to tell in simple human language what happened to the child, what can be done about it, what support to get from the state, how to arrange life at home. So that my mother understands that she will not be left alone with all this, that her life will not stop, that she will not be knocking on closed doors alone.
Why does the state allocate 20 thousand rubles for a disabled child and 250 thousand rubles for a boarding school? It would be better if half of this money was allocated to parents so that parents know that they can buy a wheelchair and medicine for their child, they can hire a nanny and continue working.
Parents need to know that they can get their children to cure seizures without being sent to prison for it.
It would be better if the state arranged not boarding schools, but kindergartens and schools, which would take children with disabilities.
Well, if the child ended up in a boarding school, at least a little bit they would give this frightened parent goodwill. The parent is afraid to ask himself. Is it difficult to say - "Please come, this is your child, we will show you, tell you and help you."
This interview is anonymous because we are afraid of judgment. To abandon a child is a very bad thing to do. But condemnation from others drives a person into a pit even deeper and leaves no chance to get out. Only support can help fix something.
It is important that this is not a story about Kolya alone, but about tens of thousands of families with disabled children in Russia. The state system allocates huge funds to ensure that children live in boarding schools. And it gives too little help and support to parents to raise disabled children in the family.