"No money in the world will save my son": where to look for strength when everything is bad

2024 Author: Malcolm Clapton | [email protected]. Last modified: 2023-12-17 03:44

The mother of a terminally ill child is about fighting the incompetence of doctors, trying to accept reality and finding joy in simple things.

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When it seems that the whole world is against you, it’s hard to pull yourself together and move on. It doesn't matter how serious the problem has caused you to search for the meaning of life again. The main thing is to find a source of strength and motivation that will help you get out of the endless cycle in which you ask yourself only one question: "Why?"

We talked to the heroine who knows exactly what pain, despair and the feeling that you have lost everything in one second. Olga Shelest gave birth to an absolutely healthy-looking child, and six months later she found out that Yura's son had a palliative status: he was terminally ill. No medicines and even the most expensive surgeries can help him. It seems that this is the end, and Olga thought so too, but found the strength to continue to live happily.

We learned how she felt when the diagnosis of her son was determined, how the family's life changed after the birth of a special child, and whether there is a light at the end of the tunnel when you realize that nothing can help you.

“For six months after the birth of my son, I lost up to 40 kilograms”

Before Yura was born, my life was completely ordinary: I graduated from the university, worked on television, got a job as a press secretary in the drug control department in the Samara region, gave birth to my first (healthy) son Timur. I was worried that we could not buy ourselves a cake or go on vacation, and I did not even imagine that there is another side of life - one in which there are terminally ill children and there is no accessible environment.

In 2013, I gave birth to Yurik. The pregnancy was going well, and the baby was born completely healthy. Everything was fine until the moment when I began to notice strangeness in the baby's behavior. The first and main thing that alerted me was that Yura slept only 15 minutes every 6 hours. The rest of the time he screamed and fell silent only at the moment of feeding.

When you put a child on his stomach, he usually tries to raise his head, but Yura did not try to do that either. I became wary and began to ask friends for contacts of good pediatricians and neurologists. All the doctors said that the child is still small - it will be clearer closer to three months.

Time passed, and it only got worse.

Six months after the birth of my son, I lost up to 40 kilograms. I don't know how I would have survived this period of sleepless nights and endless screams, if not for my mother, who helped and supported. We visited more than a hundred doctors: some said that my child was just lazy, while others advised to put him on his stomach more often so that he would scream and thus train his neck.

Five months later, I still managed to be admitted to the hospital and Yurik and I were sent for examination. The doctors noticed that the child had stopped developing, and wrote in the card a lot of terrible diagnoses, ranging from congenital lesions of the central nervous system to cerebral palsy. I was surprised, because initially I had a completely healthy son. Where did all this come from?

During the examination, one of the doctors told me: “You urgently need rehabilitation in a day hospital,” and wrote out a referral. Staying there didn't help us, but I'm grateful for her concern. At least someone, looking at my child, understood that physical development at the level of a baby six months after birth is abnormal. He cannot simply be discharged from the hospital and given standard therapy.

The doctor called him a girl all the time, although he was lying without a diaper

I saw that something was wrong with my son, so I started looking for solutions myself - unfortunately, not always suitable. So, for example, we got to a homeopath - a very famous person. It is rather unpleasant to remember how this professor looked at my child and said: “He lacks one component in his body. Buy this medicine, and in two weeks he will be able to sit. Reception cost 3,000 rubles, and the miraculous component, like any homeopathy, is inexpensive - only 500 rubles. Of course, the miracle did not happen.

Then I was advised to make an appointment with a very famous neurologist in our area - she has a lot of experience and her own private center. True, they clarified that getting to her is almost unrealistic: recording for six months in advance. By some miracle, we managed to get to the appointment two weeks later: one of the patients missed the queue, and we were offered to come earlier. I am very grateful to this neurologist, because she was the only one who clearly said: "You have genetics."

At that time, I did not even suspect how many genetic diseases there are, and I did not even know about ours. We were sent to an experienced neurologist, a geneticist, who accepts in one of the Samara hospitals. They said that we would not find anyone better. I had no other solution, so I trusted.

For half an hour of examination, this doctor 15 times tried to lift my child from a prone position and pull his arms towards herself, and I tirelessly repeated: "Wait, he is not holding his head, she will now lean back." The doctor called him a girl all the time, although he was lying without a diaper, and asked the same questions: how old is the child and what problem we came with.

I asked for a referral for an MRI, and that was my salvation. Based on its results, we were diagnosed with signs of leukodystrophy zones - this is a brain disease. The first question asked by the doctors after the MRI: "Did you drop it?" Now, when I know that my son's disease is congenital and develops from the sixth week of life in the mother's belly, remembering this question is simply scary. It once again confirms the level of "competence" of our doctors.

Now Yura is six years old, but he is still like a newborn child

I was prescribed paid examinations for 250,000 rubles. While I was looking for funds that would help pay for them, I came across a medical representative. He sent people abroad for diagnostics. I was very lucky that I did not encounter scammers, because later I heard many sad stories. Mine turned out to be happy: we paid 8,000 dollars, which included an interpreter into Russian, transfer from the airport, logistics from an apartment to a clinic in Israel. We flew in and did the only examination: an MRI of the brain in 5D format. Then, within a week, it was deciphered.

When the time came to announce the diagnosis to us, the doctors cried.

I was amazed, because over the entire period of examinations in Russia, not a single specialist did not just drop a tear - there was not even a shadow of indifference. I was told that Yura has leukodystrophy, Canavan's disease. The prognosis is unfavorable: such children, according to statistics, live no longer than three years. Now I know that this is not the limit. I am in a group with mothers whose children suffer from Canavan disease, and in six years our small community has experienced three deaths: one child was 18 years old, the second was 9 years old, and only the third was 2 years old.

Now I know everything about our diagnosis. In my son's brain, the white matter, which is responsible for all the nerve endings, is slowly dying off. As a result, at some point a person simply stops developing.

Now Yura is six years old, but he is still like a newborn child. He will never hold his head, stand, sit, consciously move his hands, speak. The body is like cotton wool - soft, so if you want to seat the child, then you need to hold the body, neck and head so that it does not fall forward or to one side. There is sight, but there is no connection between what he sees and perception. When God takes something, he gives another double, and in our case it is a rumor. Yura catches any creak, but, in fact, this is also an imperfection of the nervous system.

My child actively maintains a dialogue and does it with different intonations, but always with only one sound - "a". When we open the door to the apartment, he greets each family member with a separate greeting: he pulls the sound either more or less. He loves music and falls silent when he hears Tsvetaeva's poems.

We do not know what is with the intellect of children like Yura, but judging by what I see, he understands everything, only he cannot express it.

Our disease does not bring anything good. We can no longer drink water, but we still manage to feed Yura with very thick porridge. At a certain moment, he will not be able to do this either, so we insured ourselves and installed a gastrostomy tube - a special tube that delivers food and drink directly to the stomach. After a while, it will become harder for Yura to breathe and he will need oxygen support, but so far this has not happened and we do not need special equipment.

“This child will become nothing. What can you do?"

Even a month and a half before receiving the final diagnosis, I felt that we had something irreparable, but when the doctor talks about it, it’s very hard. I felt sorry for my son and myself. Every day I thought, where did I sin, that God punished me so - gave me such a child. It was very scary. I just didn't understand how I was going to live on. There are no unsolvable problems for me, but in this case I did not see a way out. I understood that no money in the world would save my child - I could not help him.

One day a masseuse came to us. I shared my thoughts with her that I do not understand why everything happened this way, and she replied: “Ol, do you know how such children as Yurik were called in Russia? Poor. This is not because they are fools, but because they are with God. It means that you are next to him. This was the first phrase that made me wake up a little. The next one was said by my friend and also a psychologist.

She asked: "Do you think if your child was healthy or could speak, he would like to be weights on your feet?" Here my perception turned upside down and I looked at the situation differently.

For two weeks I digested what had happened, reproached myself, felt sorry for my son, but at one point I realized that this was the road to nowhere. If I continue to poke around in myself, I will simply get bogged down in this and die spiritually. Even if the child has three years to live, will I really spend them crying over his bed? It is not his fault that he was born that way, and so was I. This is genetics, not a consequence of a wrong lifestyle. So from the question "For what?" I have a question "For what?"

The most important thing that Yurik taught me was to love just like that. When children are born, we involuntarily expect something from them, because this is our future, the realization of hopes, support. We think that they will become excellent students, famous athletes, pianists. This child will become nothing. What can you do in such a situation? Just to love - for what he is.

Thanks to this feeling, I learned not to be angry with people, but simply to wish well and walk away if a person offends me. I don’t want to carry negativity into my life, so I’ll never discuss what bad roads or politics we have: I don’t like taking the position of a sofa expert. My goal in any business now is to do what I can, and not lament over issues that cannot be influenced. Yura made me stronger and more merciful.

It is impossible to accept that you are holding a child who is slowly dying

I have no husband, we divorced even before Yura was born. I understood that I did not want the care of my youngest son to fall on my elderly parents: they are alone with me. It is quite obvious that it is impossible to live on a disability pension of 15 thousand, so I found a nanny for Yura and returned to work - this way I can earn money and feel that my child is not a burden for the rest of the family.

I think if they told me that Yura could be cured by persistently doing some exercises for 10 years, I would quit my job and put all my strength into the child's recovery. But the reality is different: I understand that nothing will put my son on his feet, so the maximum that I can give him is love, care and our home.

I am lucky in life because I enjoy my work. She helps me feel happy so that I can share this state with Yura and other loved ones. All my disability pension and part of my earnings go to pay for the nanny, and the rest of the money goes to medicine, food, utilities and the needs of my eldest son. He is 18 years old, and I perfectly understand that I want to dress stylishly or invite a girl to the cinema.

When Yura was just born, Timur helped me a lot: he intercepted the child, carried him in his arms, calmed him down and gave me the opportunity to rest. I understood that under the supervision of the eldest son nothing would happen to the baby, but any mother would understand me: it’s impossible to relax when your child in the next room is crying hysterically.

Timur and I never talked about how he perceives Yura. I think the same as I do: I have such a son, and he has a brother.

Yurik is very sociable and doesn't like being alone. His whole life is our hands and voices. Sometimes I have to run away to make evening porridge, for example. Therefore, from time to time I ask Timur to stay at home and help me. Of course, this imposes certain restrictions on him.

I remember when Yurik was two years old, the eldest son, in a fit of emotion, asked: "Mom, maybe we should take him to an orphanage at least for a while, so that we can have a little rest?" I answered: “How is it? Your brother will be with strangers, in someone else's bed, in someone else's room, most of his life alone. Can you live with this? " Tim looked at me and said he hadn't thought about it.

He wanted to make our life a little easier, but at the age of 12 he did not think that Yura was also a human being. He feels everything and loves us. What will we give it for? For having to change something in your life and become uncomfortable? I do not blame anyone, but I will never understand a mother who sent her child to an orphanage, because it is hard for her.

It’s not easy for my loved ones, of course. We all understand that sooner or later Yurik will leave us.

Sometimes my mother and I begin to imagine that now he would already be running, going to kindergarten and preparing for school. At such moments I feel a special pain precisely for my parents, because I am a mother and love the child with a different love - not the same as my grandmother or grandfather.

However, I have already said that Yurik taught us all to love not for something, but just like that. This is such a defenseless, open and bright child that the person next to him simply cannot remain indifferent. Yura will certainly touch the lightest strings - so deep that you might not even know that you have them.

It seems to me that my dad still does not realize that his grandson is terminally ill. He always jokes: "Yurik, you are like Ilya Muromets: you will lie on the stove for 33 years, and then you will get up and go." This phrase alone tells me that he is closing himself off from the truth. It is impossible to accept that you are holding a child who is slowly dying.

I try not to think about the bad and enjoy the little things

My world has not collapsed - it has changed. But I understand that with the birth of any child, even a healthy one, you no longer belong to yourself. It becomes impossible to do the same as before, when you were free from obligations to the little man.

The peculiarity of caring for terminally ill children is that you are attached to them. True, in our family this problem is minimized: a nanny comes, and I work. But my soul is always with Yura. In the morning I leave, in the evening I return, and my son sits in my arms. I can count on my fingers how many times in six years I went to the cinema or for a walk along the embankment. We spend evenings at home, because we live in an entrance without a ramp and a 30-kilogram stroller can hardly fit into an elevator. But I know many mothers who go out to breathe air even with a ventilator. This is a personal choice and opportunity for everyone.

Eating takes only 30 minutes. I think it takes about the same amount of time to feed a healthy baby: while drinking some water, while turning, while stroking him. Every morning I process the gastrostomy tube through which Yurik feeds, but for me it's the same routine as brushing your teeth. The only question is how to relate to this.

Many mothers who have given birth to terminally ill children think that life is over. I always want to tell them that this is not the end.

Special children come into our lives for a reason. Since they chose us, it means that we are stronger, we will definitely cope and must be happy. The state of our children depends on our emotional state. But what I’m saying now applies to healthy children, don’t you agree?

The difference is that I live on a powder keg and am afraid of any infection. If such children have a fever, then it happens instantly and it is very difficult to bring it down. In 2018, Yurik had a fever and fainted. I had a terrible panic: I realized that I was losing a child. Timur came to the rescue, took Yurik away from me and insisted that I leave and call an ambulance. I don't know what he did, but when I returned, the child was already conscious. Then for the first time we got to the intensive care unit, where Yurik's trachea was cleaned through his nose. While this was happening, he gnawed all of his fangs in pain. This is probably the worst thing that I can remember.

I try not to think about the bad and enjoy the little things. When the younger is stable, I am happy. It's great that I have a mom and a dad who sometimes make me feel like a little daughter. I exhale when they arrive on Sunday and I have the opportunity to sleep not until 8:00, but until 10:00. Of course, I am happy that I have Timur. And also - when my mother and I can just take a walk on the weekend: walk around the house or in a shopping center, and sometimes even sit in a cafe. These are all small things, but they saturate me.

My main source of motivation is Yura

Now I am the executive director of the EVITA charitable foundation. It was founded by businessman, musician and philanthropist Vladimir Avetisyan. When he invited me to head the organization, I was already looking for families for orphans with disabilities. Gradually, this activity became one of the Foundation's programs, but besides this, I told Vladimir Evgenievich my story - about children with incurable diseases and mothers like me. The fund was created to help people gain health or significantly improve the quality of life: for example, they paid for an operation - the child recovered, bought a stroller - a person was able to leave the house for fresh air.

Helping children who will never get better is difficult, but necessary.

Vladimir Avetisyan recently admitted: “The most difficult thing is to realize that we cannot cure these children. But we can help them live without pain. Today, palliative care is one of our key programs. About 5 million rubles a year are spent on medicines, food, operations and medical equipment for incurable children, and the same amount for other programs.

We managed to organize six palliative wards in the Samara region in two different hospitals. These are small houses for mothers with incurable children. There is a sofa, a special bed with a torso, a microwave oven, a kettle, a TV - thanks to these conveniences, you don't have to run through ten rooms to warm up your child's water or food. We also installed dryers inside, comfortable cabinets and air conditioners that allow you to adjust the temperature to the needs of the patient.

A year has passed, and parents are still sending photos of their children in new wards and thank us for the comfort and convenience. This result is a great pride for me. I would like to create several more chambers, but the fund's budget has suffered a little due to the coronavirus pandemic. More than 150 children are receiving help, and now it is important to concentrate on the primary tasks, and then, I hope, we will continue to work on the wards.

Mothers who are in a state of grief and despair often write and call me, but I understand that I can only help with a word - this is unsettling. It upsets me when I explain how to do it, because I have passed this way, and they do not listen to me. Then, however, they call and say that I was right, but the time has already been lost.

I am upset by doctors who do not want to develop and confuse gastrostomy with tracheostomy. Once I was told: "The vocation of doctors is to save lives, not watch them fade away." I was then very surprised and replied: “Why watch the extinction? Nobody knows how long our children will live, so you can just be there. " Unfortunately, few are ready for this now.

Of course, sometimes you want to give up everything, because it seems that you are fighting with windmills.

But in moments like this, it is important to think about the children you are helping. I am empowered by foster mothers who talk about the successes of their children, and many more everyday little things. But my main source of motivation is Yura. If today he wakes up, smiles, smacks his lips with pleasure or sings a song, this is already the coolest morning.

Most of all I want him not to suffer when he leaves me. Let this happen not in intensive care in the position of crucified on the bed, but with me - at home, where it is calm, not painful and not at all scary. I will hold him in my arms. The main thing is that he knows that I am near.