Here are five inspiring stories of how different parents have found the strength and faith to raise their seriously disabled children with a positive attitude for the future. They talk about how to survive, about their joys and concerns, the support and lack of support they receive from others, social attitudes, love, despair, and love again.
Alexandra Semenova. “I learned to appreciate the little joys in life”
Alexandra Semenova, the “Dream Skis” Project Director in the Udmurt Republic [an autonomous republic in central Russia], a member of the “Assol[1] Association of Disabled Children, Persons with Childhood Disabilities, Their Parents and Care-givers” public organization in Izhevsk (the Udmurt Republic’s capital). Her two daughters are Rita [a diminutive form of the name Margarita in Russian], sixteen, and Maya, eleven. Maya has cerebral palsy (CP).
I have very vivid memories of my impressions during the first walk with my baby in her buggy. I thought that the whole world must be gazing at me and that this was the most significant event on our planet. It seemed as if nobody had ever done it before me. (Laughs).
My husband was with me in my delivery room both times. It was a great support. Although it was so long ago, I still remember what the weather was like on those days. In my view, if I had been alone in labor, the doctors’ attitude would have been different and I would have been less protected.
With regard to our second baby, it was a birth injury. CP can be caused by many factors, the most widespread of which is hypoxia (oxygen deficiency) during delivery. The severity of the disorder depends on the number of the injured brain nerve cells. My daughter has mild CP, but there are also severe forms of this disease, when children cannot walk, or remain mentally impaired.
My daughter was most probably infected at the maternity home, but I couldn’t waste time trying to find out a satisfactory explanation as I needed to treat my infant.
The first several months were a nightmare. The same thought kept pestering me day and night: ‘What will become of my baby?’ The doctor told me: ‘Stop crying! Your daughter may still begin to walk.’ It was unclear what would come of it.
Some areas of the left hemisphere of Maya’s brain are damaged. It is a fact. I noticed this when she was less than one month old. We are so grateful to our Republican Children’s Hospital, to its pediatric neurology department. There is a wonderful doctor there, Natalia Rudolfovna Chugunova, who literally saved Maya’s life by giving her a correct diagnosis. Thanks to her we began our rehabilitation process when it was not too late. As a result, Maya’s condition considerably improved.
My elder five-year-old daughter was extremely supportive of me. She was with me around the clock. So I couldn’t cry during the day and would howl only at night.
Generally speaking, it is always so helpful if a family has a healthy child in addition to a disabled child. I don’t mean the parents’ constant commands: ‘Fetch us this! Give us that thing! Sit with the baby today!’ Rather, I mean moral support. First and foremost, you see how your healthy child develops. For example, a toddler takes his first steps at the age of twelve months, starts to speak at the age of two and begins to read by the age of five. It enables you to take a sober view of things and estimate your disabled child’s abilities. And every step forward is slow and requires painstaking efforts from the mother, tutors, specialists… And we treasure all our little victories.
Our daddy loves Maya dearly. When we were going through very hard times for the first several months after her birth, he used to say, ‘Our girl, this is our girl! We will live with this.’ Sometimes husbands leave their families after the birth of a disabled child. Mothers are stronger, and fathers are weaker in such situations.
But eventually my husband and I did separate, though it was not because of the children. To my mind, it was due to my vigorous activity. Not every husband can withstand this test—a very active wife and her achievements. Anyway, I am not one to judge. I have changed a lot.
I came to realize that I can bring about some positive changes to this world and make society understand that we, the parents of children with special needs, are like all other parents. I was an ordinary parent for five years and I would look down upon handicapped children’s parents… I thought that such a thing could never happen to me, that it was exclusively the lot of alcoholics and drug addicts, while I did not drink, smoke, or ignore my doctors’ advice.
When I was faced with this challenge, I saw that there were so many wonderful parents in this ‘world’. Only love gives them strength.
But you go through difficulties in any case. You have to undergo the torments of becoming aware of your new self, of the new world around you and the fact that your child will never be like others. It is difficult to accept this, so many parents either don’t accept the situation or do it very slowly, trying to blame others, to find ‘healers’ or pretend that everything is fine. There are many ways of escaping this problem. Not everybody can accept reality as it is.
In fact it is a hard inner work. Every single person has his own experience. I came to realize that I have internal resources, that I can help not only my own child. If you want to turn the world towards children with disabilities, you won’t succeed in this by turning it only towards your own child. It is impossible to provide an accessible environment only to one child. If you do something for your child, you do it for all children. It simply doesn’t work in any other way. Natalia Belogolovtseva wanted to make alpine skiing an adaptive sport for her own disabled son, but she did it for the whole country.
Many mothers do much more for their disabled children’s rehabilitation than I do for mine… but with no result. It depends on the degree of brain damage. There is no remedy for CP; it is an incurable disease, we can speak only about restoration therapy or rehabilitation.
I learned to appreciate the little joys in life. After all, you can walk, speak, read, see the sun, go outdoors and take a bite of a sandwich, step into the water, feel a ladybug crawling on your skin, lie on the sand. You can realize all of this and take joy in everything. I have changed much, earlier I was very different. Now I am happy with every day and all the people willing to help us. Ever since I began to help children I have felt that I have been attracting kind people. It is a miracle for me every single time. I believe it is because I opened myself to the world.
Everything is interesting to me and I like to assign many tasks to myself. I am currently managing multiple social projects simultaneously, namely the “Dream Skis” in Izhevsk; an inclusive theater jointly with the “Ptitsa” (“Bird”) Theater; the “Theater in Wheelchairs” studio; and the “Assol” center for development of children. It took me and my activities several years to earn recognition by the city. Now people, especially the authorities, the public and benefactors, know about us, listen to us and pay attention to us. We have reached this level through our enthusiasm alone. Our team consists of parents of disabled people like me. There are 200 families in it; ten of them take an active part in our work.
All of a sudden miracles started to occur. First we built a children’s playground in Izhevsk, then we began to work on the “Dream Skis” project, and finally the Undervud[2] band that supports it gave a concert at Chekeril (a sport resort near Izhevsk). So, one should set goals and work hard to attain them despite all difficulties. Later I said to the Undervud vocalists: ‘You and your songs have filled me with the bountiful energy that launched this project in Izhevsk. Now we are having forty children!’
I have lots of ideas. People call me every day and suggest their ideas too. Our children are growing very fast. I think in two years my participation won’t be needed at all. I also want to develop so-called ‘accompanied employment’. This is when disabled children come to a specialized center, for example, a laundry, several days a week, and work under the direction of support persons or supervisors. The problem is that many disabled adults as well as children remain socially isolated.
People often spare their feelings. They often say: “No, I can’t! If I come and see handicapped children, I will feel pain and burst into tears!” How can they be so sensitive?
I have no answer to the question as to what will happen to my daughter after I die. I hope that I have enough time to change our society so that I might leave my girl with no worry and risks in due time. And our society is not ready to co-exist with the disabled at all. I often despair deeply, thinking that I am just fighting windmills and unable to change the situation. For instance, with the “optimization” in Russia’s health care many children’s clinics are being closed, highly skilled doctors opt to work in private expensive medical centers, so we have to pay for all our medical services... And so forth.
You should accept. Accept and love. You ought to take joy in your child’s little everyday achievements. Of course, you will see people frowning continually if you are thinking only about that. If a mother feels awkward in her situation, she will inevitably see scowling glances in every corner. It wholly depends on the mother.
When everything is bad, you should begin to feel that all is well rather than pretend that everything is all right. It is because we live, because love exists and we are loved by our children. We love our little ones and they need us. We can really change this world, make it better not only for ourselves but also for the people whose situations are worse and who feel more pain than we do. Indeed all is well.
Maya, Alexandra’s younger daughter, goes to a specialized school for children with CP. She recently took part in a regional alpine skiing competition (the “Dream Skis” program) and finished third. In addition, Maya plays in an accessible and inclusive theater, supervised by the “Assol” public organization (https://vk.com/assol_deti).
“The religious faith helped me accept this new reality”
Alla Shumikhina. Alla Shumikhina, Head of the Department of Meteorological Services of the Udmurt Republican Meteorology Center (Izhevsk). Her daughter Xenia, twelve, was diagnosed with Rubinstein-Taybi syndrome (RTS).
My daughter learns in a class for children with severe mental retardation (intellectual disability). Yet she is one of the ablest pupils in her class. All those who see Xenia love her dearly and say that she is a pure soul and a very inspiring person.
She is fond of technology, computers, and gadgets. She learned to use the internet herself and can find whatever she needs there. She likes dancing, whirling around and listening to music.
I was very young when I learned that I would become a mother. I was twenty-one and had no special emotions about that. It was a difficult delivery and it was a nightmare. I don’t remember my physical sensations, but I do remember my emotions clearly: it seemed as if I were cast into hell. My baby was very sick and the doctors warned me that we would most probably have many health problems.
We both spent the first year of Xenia’s life at the hospital. But my daughter was diagnosed with Rubinstein-Daybi syndrome when she was six months old. It is a very rare disease. While we were at the hospital, one doctor was leafing through a hospital book and comparing our condition with its contents. As a result she gave Xenia a correct diagnosis. She came up to us and said: ‘Please, don’t get very upset and don’t make hasty decisions. (She saw that I was so young). Your baby is most likely to have this disorder. It means that she will be mentally retarded all her life; there are limitations in intellectual functioning and behavior.’ It was a real shock for me. More than that, I was an unmarried mother. So I felt utterly abandoned. I wept for half a day. I myself was a child. I remember my feeling of resentment for life in general, the entire world. I suffered of a total lack of support. I was depressed, lonely, and scared.
I accepted this long ago. However, it was a long process consisting of several stages. Firstly, I needed to realize that my life was going to be different from what I had expected. Secondly, I needed to feel happy in that situation and develop a right attitude towards my little one. The main thing I learned since then is the following: I have harmony in the new life that I have now. It became ‘normal’ for me.
The faith really helped me at that stage. I was baptized shortly before Xenia’s birth of my own accord. As a neophyte (a convert to the faith) I was filled with religious fervor and it lasted several years. I have no idea if I would have survived that period without faith or not; perhaps I would have given way to despondency and despair. The religious faith helped me accept the new reality. At present I am in the next stage of the life of faith. It hasn’t grown weaker at all, but it is different.
I have changed considerably. Formerly, I was so light-minded. Now I am mature and, in some sense, down-to-earth.
And one day I felt an inner freedom, a possibility for getting rid of all my phobias—for example, the fear of telling others about my child. The fear was not groundless. Earlier I felt discomfort and stress every time people stared at us, as a disabled child attracts attention. Very often their reactions were unfriendly. Initially I wanted to distance myself from others. But later I resolved to put an end to that feeling of embarrassment and to tell people about my child. Now I am free from those fears, albeit not completely. Sometimes I feel really bad and even don’t want to go for a walk with my daughter. Sometimes children are cruel. Children who walk in our yard can be aggressive to my Xenia and call her names. I am not always sure what my reaction should be. I want to keep my self-control, yet at times it is very hard for me to do so.
Outwardly and physically Xenia is like all other children. Our major problem is that my daughter has dysphasia and psycho-emotional and mental retardation. But she is very clever nevertheless. However, she cannot control her behavior in the presence of others. But I count upon a huge leap in development during the child’s transition age.
We receive considerable support from the government, including financial support. But our people are still very immature in regard to their attitudes to disabled children. We their parents get scared and withdraw into our shells. As a result, people don’t know how to respond. I believe we should take the first step towards mutual understanding. We should go out of our homes, go to people and be among them, and they will get accustomed to the handicapped. At the beginning I couldn’t develop a right attitude towards my handicapped daughter, but now I consider her a full-fledged person and member of society. It will be a great achievement for our society when non-disabled people begin to treat members of the disabled population as their equals.
Of course, my communication with Xenia is limited as she cannot speak. I can say that I have lived with a baby for twelve years. At the same time, I do feel there is an emotional connection between my child and me, albeit in some other form.
I met my husband when Xenia was still staying with my mother. I moved from Kazan to Izhevsk and took my daughter with me at the earliest opportunity. By the way, my mother was always very supportive of me. I grew up in an atmosphere of mutual love and support. Today I set high goals and pursue them with confidence largely thanks to my mom. I owe my self-confidence to my mom’s influence. She also helped me with my daughter in each stage. She neither pointed out my mistakes nor blamed me.
Immediately and without hesitation I told my future husband that I had a child with special needs. But he did not worry about that. They immediately found common language. Now my husband loves Xenia as his own daughter.
I begin every day with a quick prayer—it gives me strength. My communication with God is always short and simple, yet it comes from the bottom of my heart.
But sometimes I lose heart. The bright feelings that arise in me do not always last long. From time to time they leave me.
Despite everything I feel I am a happy person and a happy mother. Xenia has taught me another level of love. Parental love is typically the most unselfish one. Loving our children, we subconsciously expect them to give us their love in return. But in my case I have nothing to expect. I love just because I love. Our actions determine our character. The love I give to my daughter makes me better. And I am thankful to Xenia for that.
“You should close your eyes and move forward with faith in yourself and your child”
Natalia Belogolovtseva. Natalia Belogolovtseva, founder of the “Dream Skis” project for people with disabilities (Moscow). Her three sons: Nikita, thirty-one, Alexander, thirty, and Evgeny (Eugene), thirty. Evgeny has CP.
Both boys were born prematurely, and there were twins rather than one baby. Doctors said to me: ‘Deliver the second one as soon as possible or he will die.’ Can you imagine my reaction? At that moment we were living in the Far East at a family obshchezhitie [in the Soviet Union these were so-called ‘shared apartment buildings’ where couples could temporarily live in separate rooms or small flats], when Sergei[3] worked as a mining engineer. I went to my parents to Moscow to give birth to my sons. Finally we had to return to their apartment again with all our children where five of us were to live in the same room. And that period lasted quite long. I was twenty-four and had three children.
The infants were tiny and physically weak. So they were placed into the incubator for a time. On the third day it appeared that Evgeny had heart murmurs, so we both were taken to Bakulev Institute of Cardiac Surgery in Moscow. The doctors found that Evgeny had four heart diseases.
My parents wholeheartedly devoted themselves to helping my boys survive. The children stayed at the hospital for a month and a half. My aunt and cousin would come and help us too. My granny who then was eighty took it upon herself to take care of little Alexander. My family made a Herculean effort to help us and we are so grateful to them.
And the children have always supported me and Sergei. They are and have always been willing to help us with Evgeny, they never felt embarrassed by him… It was our common struggle.
Of course, I thought much trying to figure out why it had happened to me. It is impossible to answer this question. It was a nightmare in our life; sometimes we can cope with the problems that befell us, but sometimes we can’t. Now Evgeny is about thirty, yet we still don’t live as a normal family. Zhenya’s [a diminutive form of the name Evgeny] diagnoses… I cannot read them without tears. They are written on one page and a half. This life is truly unbearable. However, there is no getting away from it…
We play neither TV nor radio loudly at home. Every minute I must be sure that Evgeny is breathing. Earlier he had convulsive attacks with respiratory arrests on some occasions. I needed to respond and act as soon as possible. And I caught myself being very calm each time it happened. I even used to say to myself: “How can you be so unfeeling and callous?” But once the worst is over, I feel dead tired, unable to move any of my limbs. Therefore, I muster courage at the moment of imminent danger.
Some call my situation “a cross to bear, a trial, purification”. But I would think, I don’t need a cross. Give me a healthy child. Let me live a normal human life everyday, without this suffering and podvig [heroic labor], I don’t want it.
Imagine your life when you know that your child can stop breathing at any moment. And you live with this.
It is hard for me to imagine our life with all of our children being healthy. And this is a period of thirty years of life.
As a year-old baby Evgeny weighed only five kilos. He could sit on his own from the age of three, made his first steps at the age of six, and he learned to walk for four years after that. Evgeny would stand up, take two steps, fall, hit his head, while I would run around him, trying to catch him. I was kind of obsessed and persisted in teaching him to walk. Why do some children with intellectual and other severe disabilities never begin to walk? Because their parents don’t want to take the pains to teach them. I wholeheartedly devoted many years to this and now my son can walk independently, whereas I could have got him seated in a wheelchair and not to worry about him any more…
The doctors predicted that Evgeny would die early, but the reality is proving them wrong and I am not interested in their opinions.
Evgeny is the only certified actor in our family. It was achieved by accident. Of course, nobody wished to train a sick boy as an actor. But it was our family psychologist (who is like our ‘guardian angel’ and has been with us for twenty years) who suggested this idea to us. We are so fortunate in having many kind people around us. So, our psychologist and Evgeny started with reciting poetry and preparing puppet shows. Much to our surprise, the psychologist discovered that Evgeny is a talented actor. And soon the headmistress of his school called us and said: ‘Do you see that your son should study at a theater art institute?’
Most educational institutions naturally refused to admit a severely disabled applicant, though we did find one small institute of theater arts which wanted to see Evgeny and eventually agreed to admit him. And in due course our son did an excellent performance based on the famous drama, Bury Me Behind the Baseboard.
But at present we are told by everybody that no audience is interested in a handicapped actor and that people are wearied by his performances.
When Evgeny was seven or eight, I was ashamed of his condition and did not go to walk with him. People would display idle curiosity, poke their fingers at Evgeny, and lead their children aside. It was hard to endure that monstrous behavior… Today, there are more people with disabilities in our public space, and people are becoming accustomed to them. I presume that the terrible attitude was ‘inherited’ from the Soviet era, when after the Second World War the disabled were removed from the public space and placed into special institutions for years. Now the situation is improving.
At the same time, Evgeny is and has always been so warm, as if he has been radiating warmth, optimism, and open-heartedness. Generally speaking, small children are powerful “modulators” and “transmitters” of vital energy. This applies to all children, but to disabled ones in particular.
Clearly, Evgeny is unaware of the darker side of this life. This state of things has its minuses. He has been under our protection and has no idea that people can deceive or offend each other. He still lives in a “utopia” as it were. On the other hand, does he need to get a beating to “experience” this darker side?! In short, we are trying to find a solution. But now I don’t think that he can live on his own.
Our family, our relations are the most important things in our lives. My son has taught me courage, responsibility in decision-making.
I regret not having more children. To be honest, I was scared. Now we are so happy to have grandchildren and we adore them.
We brought up our children in strictness. “Evgeny, don’t make yourself out to be a poor disabled boy!” we used to tell him. In other words, we insist that he should feel and behave as a full-fledged human being, albeit with some reasonable limitations for safety.
From time to time mothers need to have a respite from their children. They must love themselves and their time. This is what I have read in one interview: “The best things are for moms!”
We were extremely poor until our children turned ten or so. Here is a real situation: At one time we could only afford to buy one orange for three of our children per week, share it between them, and I would finish up the peel. At the same time, I know from our family’s experience that if a family really wants to cure its child, it will find all the necessary resources to do it. Sergei worked at a construction site, and I wanted to wash the floors of apartment buildings’ lobbies (he never allowed me to do it, though there is nothing awful in this job).
You should close your eyes and move forward with faith in yourself and your child. I decided that Evgeny would live.
Four years ago Sergei and Natalia Belogolovtsev founded the “Dream Skis” program which gives both children and adults with various disabilities (CP, autism, Down syndrome, visual and hearing impairments) access to an effective rehabilitation and socialization process.
Over 5,000 people have taken part in the program to date. This specially developed technique of alpine skiing speeds up the treatment process and allows them to feel healthier and happier.
The “Dream Skis” program needs your support: http://dreamski.ru/help/.
God… will not suffer you to be tempted above what ye are able.
Lyubov Beloborodova. Lyubov Beloborodova, Moscow. A priest’s wife, a housewife, member of the Rett Syndrome Parents Association. She has two daughters: the eldest, Elizaveta, eight, has Rett syndrome.
When the doctors announced our diagnosis, I was relieved.
When our daughter was four months old, I noticed that there was something wrong with her. Then I was a psychology student and we were studying infant development. I was alarmed because Elizaveta was too calm and did not turn over at all. And we were overwhelmed by problems that came like a bolt from the blue: My daughter neither turned over, nor began to sit up on time, nor began to crawl. On top of that, she did not sleep well, often became hysteric, screamed, cried, and vomited. We consulted pediatricians and psychologists, but they said that it was her temperament and that she would surely catch up to her peers. They would say, “Rest assured! Everything is well!” So I would stop worrying and settle down. But every time something happened again soon and I realized that my baby did have real problems.
When Elizaveta turned two, we consulted a geneticist. He supposed that she had Rett syndrome (RTT). We did genetic testing and were told that ‘no mutation was found’. But another specialist saw an error, we did a test again and this time Rett syndrome was confirmed. RTT is a rare disease with an approximate prevalence of one in 15,000 people. It tends to affect mainly girls.
Some are driven into despair, others get terrified, but I found my starting point and realized that at last I had something to work with. Earlier I had been completely in the dark about my daughter’s condition, while it had been crystal clear that something was wrong with her. For me the period between four months and two years since Elizaveta’s birth was much more difficult than the present one. Perhaps I shouldn’t say this. Now I have concrete tasks and a concrete plan of action; I know how to take care of my daughter and organize her rehabilitation.
I have no illusions about Elizaveta’s complete recovery. She is very likely to remain disabled for the rest of her life and I have accepted that. But we do hope that she will begin to walk one day. The current American research (American scientists are investing a lot in gene therapy) arouses hope as well. At the present time they are testing one important drug which may minimize the symptoms. Unfortunately, Russian scientists are not involved in this research.
Sometimes, when I feel very bad, I ask myself this question: Why did it happen to me? In general, RTT is an unpredictable disease: as long as it is not progressive all is quiet, but the situation may change radically at any moment. Liza [a diminutive form of the name Elizaveta] cannot walk, she has epilepsy, but she can chew and swallow by herself, so all is fairly well. However, in case of regress her condition may deteriorate rapidly. We experienced this last year: our daughter wouldn’t stand on her leg and felt much worse. So you are suddenly weighed down with numerous problems, while you are not prepared for them. At those moments out of your human weakness you begin to grumble: ‘What have I done?’ We personally answer ourselves this way: God… will not suffer you to be tempted above that ye are able (1 Cor. 10:13). He sent us this girl for some purpose. Maybe He wants us to get stronger. When you have a heavily disabled child in your family, you make efforts to improve and cultivate your abilities. You need to be stronger, purer in order to help her. And you see Divine providence in action. For example, there are so many kind people around us. As soon as we pray quickly and say, sighing, “Oh, how difficult it is!” good people appear as if out of nowhere and ask us themselves, “How can we help you?”
Sport activities help me keep fit and maintain my inner strength. It is best to get up at six in the morning and do your exercises in the silence or even outdoors… I really need to be strong as I have to carry my daughter. My husband [Priest Sergei Beloborodov] and I can watch some funny movie late in the evening, while the kids are sleeping, or go to a café—it helps me accumulate energy for another half a year.
In our family everybody loves Elizaveta. We live with my mother [Galina Sokolova, widow of Archpriest Fyodor Sokolov, rector of the Church of the Holy Transfiguration in Tushino, Moscow, a beloved pastor of hundreds of his spiritual children, who tragically died in a car accident in 2000], so we have plenty of guests every Sunday with tea parties. Elizaveta enjoys this atmosphere: she begins to talk a lot and listen as the guests sing. One of my sisters, who is the choir director at a church nearby, comes here from the opposite end of Moscow on Sundays to stay with us overnight, while some people come after church services. Our flat is always full of people. This atmosphere is favorable to Elizaveta. And I don’t stay at home alone—I feel that life is going on and it is in full swing.
Whenever Elizaveta is smiling and laughing, she becomes a normal healthy child.
And it is important to struggle with negative thinking. As I start reading a prayer, or the Gospel, or my favorite Akathist, I get better. I thank God for every single day: He has given me this day and gotten me through it, therefore, all will be well.
In Rett syndrome, eye contact is considered a common form of communication. Girls with RTT are often called, ‘intellect confined to the body’. They understand everything, but their bodies prevent them from expressing themselves. Elizaveta is always looking for her younger sister Sophia with her eyes and waiting for her (Sophia) to pay attention to her. Elizaveta loves her dearly and smiles at her. And Sophia tells other children about Elizaveta, about her illness and defends her.
Slowly as it may be, the attitudes towards disabled people in our country are changing. The public awareness of their needs is increasing. I am never embarrassed to be seen with my handicapped daughter. I think children with special needs should be able to take part in various events, to be present at concerts, theater performances. That is vital for both parents and children. They should be able to socialize and be integrated into society.
Although, old women in the church are not always friendly and mindful of the needs of a disabled child next to them. They can say to me, “Why have you come here with this big wheelchair?” I explain the reason to them with perfect calm. I have never experienced any aggressive behavior, though.
I am often asked by other parents how we manage to receive aid from generous people. I answer them, “That’s not me, I give my father the credit for this.” He died eighteen years ago, but people still remember and love him. His short life was such that he is still honored and revered by many. So Elizaveta is fortunate enough to be a granddaughter of her grandfather, as I have a blessing of being my father’s daughter. My father used to say that it is not good for anyone to be alone. Each of us should love and protect someone else, take care of someone else. Children appear in our families as a continuation of our love, of our life. By sending us children the Lord puts us to the test. We want our children to become good people and we must raise them that way.
We can resort to prayer, and it gives us consolation. We feel the help and support of God and His providence. It’s our life, and the Creator sent us the child not for our sins (all of us commit sins)… These children with special needs… They are different and they teach us to live our lives according to the calls of our hearts and conscience.
On March 23 Elizaveta Beloborodova turned eight. She leads an active life and is currently learning to control her voice in order to communicate with people more effectively. Her family made a website dedicated to the girl’s life (http://angel-liza.com).
If you want to donate for Elizaveta’s medical treatment, you can transfer money to the Visa Card (Sberbank of Russia) of her mother, Lyubov Fyodorovna Beloborodova: 4276 8380 9284 8565
“I solve all of Anna’s problems myself”
Evgeny Krivenko. Evgeny Krivenko, a Russian media producer (Izhevsk). Four children: Dmitry, sixteen, and triplets Barbara, Anastasia, and Anna (seven). Anna has ESES (electrical status epilepticus in slow wave sleep).
Anna’s first epileptic seizure happened when I was to leave for Perm, but I stayed at home because there was no bus ticket. She didn’t usually sleep with us, but that night she came to our bedroom towards morning and I saw that her head, arms and legs were twitching, with her eyes rolling upwards. She was three years old. I took Anna in my arms and she lost her consciousness—she was not breathing and had no pulse. I laid the child on the floor and gave her artificial respiration. Two or three minutes later she regained consciousness. It was a generalized seizure, but now Anna has only focal seizures which have a limited activity involving one or two parts of the body (a leg, an arm, a leg and an arm, a cheek, an eye) rather than the whole body.
My wife Lyudmila called in an ambulance, which arrived twenty minutes later. By that time Anna had come round, though she did not remember who and where she was. We both were taken to Pediatric Clinical Psychoneurological Hospital of Izhevsk. The doctors told us that Anna had epilepsy, “Everything is okay. Wait for the next siezure.” I turned to my acquaintances and we ended up at the Republican Clinical Hospital. But we were not given a precise diagnosis for a long time (for a year) all the same. Over that period there were seizures, which varied in severity; and it was not until our move to Perm, to one specific neurologist, that everything became clear to us. The most important thing in epilepsy is finding a trustworthy doctor. I think we had seen around twenty doctors before meeting Alina Sergeevna Vyatkina, Head of the Neurology Unit of the Perm territory’s Regional Pediatric Clinic. Anna was immediately diagnosed as having ESES. This diagnosis was later confirmed by German specialists.
Russia has had no good, pure hormones for ten years. At length we were offered a federal quota (grant), but it turned out that the further examination was impossible as we had learned all we could in Perm (our regions are very well equipped).
We had two alternatives: either to register Anna as disabled and opt for palliative care or to look for a clinic.
I felt certain that the remedy existed. I called as many as fifty clinics, including Professor Ayvazyan, a famous pediatric epilepsy doctor in Moscow, and told them about Anna’s symptoms. I am not sure if they were listening to me attentively. The most common answer was: “We are sorry we can’t help you. Your daughter has a very rare form of epilepsy.”
And it became clear that we must launch a fundraising campaign, because an examination in Germany alone cost an astronomical sum of money—500,000 rubles.[4] And it was a psychological barrier for me as I realized that I did not have that money and there was nowhere for me to get it from. We immediately sold our flat and bought a smaller one. Then we sold our car and borrowed some money from our friends and relatives. After that I started raising money.
In our family it is my responsibility to take care of Anna. If she goes to hospital, I go with her. I solve all Anna’s problems myself. I decided to do it of my own free will.
A lot has changed. First and foremost, it is our perception of life. Anything can happen at any moment, and we are powerless to prevent it; nothing depends on us. The more children we have the more we think about this. I have arrived at the conclusion that we cannot escape our fate. But I have also noticed that we can always remedy the situation. Earlier I swam with the tide and never took serious decisions. But I have changed since then and now have so much energy (goodness knows where from) to solve the problems that everybody else deems unsolvable! There is faith inside me and I believe that we will surely win, but for that we will need to overcome difficulties.
In addition to technical things like money, we need to know our next steps and how we can get to the point when we can calm down at last. In February 2018 alone Anna had five seizures, and each time her memory deteriorates. What impact will it have on her future? We fear it most of all. Our primary concern is that we want Anna to reach the age of ten to twelve—the puberty period—as soon as possible. At that stage of development the child’s body starts to take on adult form. ESES is a purely childhood syndrome; cases of this epilepsy have never been described in adult patients.
I make efforts and form a mental image of Anna’s wedding and visualize myself as her children’s grandfather. This is not my dream, I really see this image in my mind and want it to become reality. I believe it can come true.
I can find many shortcomings and flaws in myself due to which I well deserve these trials. But I cannot really believe that they are from God…
Despite everything, Anna is stronger than I. She has gotten used to all these difficulties. She can warn me about her seizures. And she always has a plan in her mind: ‘Well, dad, today I’ve had a seizure. But, please, stop crying, pull yourself together, and let us go to Blank [Anna’s doctor, Christian Blank] straightaway, he will put the drip into my vein, and all will get back to normal.’ And Anna keeps trying to prove that she is not ‘inferior’ to her peers. Recently she learned a long poem by heart; we together often look at the homework that her sisters do at school. With all these things my daughter wants to say, ‘Don’t worry! Everything is not so bad!’ The girl has grown considerably over this period. We trust each other and can discuss any topics.
However, I had to encounter negative moments too. For example, while we are raising huge sums of money for Anna, other families are not receiving funds for their children’s cancer treatment. So those parents demand that the money we have raised be sent to them instead. Sometimes they threaten us. Sometimes they write: “Why are you trying to treat your daughter? Her disorder is incurable!” I always answer them in a peaceful, friendly manner and explain: “Perhaps you are right and I shouldn’t have done it. But she is my child and I have a right to make this decision.”
Initially my wife, and my sister (who received letters as well) and I were very upset about this. But now we are stronger and we must keep pursuing our goal.
Now Evgeny and Anna Krivenko have returned to Izhevsk from Germany for a short while. The family has managed to collect over 450,000 rubles (c. 7,178 US dollars). The treatment is to be continued in two weeks. Later they will need to collect about 280,000 rubles (c. 4,463 US dollars) to purchase medicines for the next year. Anna will be taking twenty medicines a day.
While Anna is receiving her medical treatment, her classmates (including her sisters Barbara and Anastasia) have been sending letters to her: “We are waiting for you!” “Hope you will learn to count!” “Wishing you a speedy recover!”, “I love you!”
You can help Evgeny and Anna:
- Through PayPal: https://www.paypal.me/kriev
- Sberbank: 4276 6800 1388 1329
- Tinkoff Bank: 4377 7237 4401 7629
The bank cards are linked to the mobile phone number: +7(912)021-94-37 (Evgeny Viktorovich Krivenko).
