"Unbearable life can be made tolerant"

Portrait of a woman who saves seriously ill children every day

The plane from Moscow to Perm flies just the two hours that make up the time difference between Moscow and Perm. Lida flies out at midnight, and arrives at four in the morning. So, in a couple of hours, a short Lidin night will begin and end. Lida sleeps in airplanes. And he also sleeps in trains. And almost always in a dream she dreams that she is going or flying somewhere. “In general, nothing interesting,” says Lida.

Although, probably, this is also how interesting.

Lydia Delishevskaya thirty six. From twenty - it works in medicine, with the most severe patients. Those as it is difficult to even imagine: oncological, surgical, resuscal, terminal.

"Why, Lida?" - I ask. “I only feel the meaning of what I am doing. Well, - hesitates - how to say ... I see a return, understand? " And he looks very directly in the eyes: do I understand?

It is quite difficult to understand Lida. With such an education as her, with such work experience you can earn a lot and work anywhere: by the way, at one time Lida worked in cosmetology and clients were expected to pray for it. But Lida left the beauty salon. “This is just some waste of time, it is not clear why,” says Lida.

The plane sits in Perm at 4.40 in the morning. Big Savino Lida knows with closed eyes. Perm is her usual route. Of those which time a week, the patronage sister of the Babochka Children Foundation Lidia Delishevskaya with a full suitcase of bandages, nets, bandages and sponges flies or goes to the child without skin.

"How many meters of bandage usually go to the child?" -In a businesslike way, I ask Lida. “Oh, I don’t know,” she suddenly lost. And he looks as if I asked about something indecent. For about five minutes we are silent:

“You see, this is impossible to calculate in advance. Once the child was so heavy that my patronage box was enough only half, ”says Lida.

"And what happened next?" - “Thank God, it was in Moscow. I bandaged half. I went for the dressing material, returned. And bandaged the other half. But after all, children-butterfly, they are not only in Moscow. Both in Vladivostok and Grozny. Then there is nowhere to return. We strengthen everyone that is. ”

In May 2013, an extraordinary Masha, a butterfly girl, was born in Perm from the ordinary parents of the Ivanovs. But at first no one understood this: just a stain on the back is five centimeters in size. And inside the spot is no skin. The next day, the factory told her mother that Masha had an infectious bubble. Transferred to a children's hospital, put in intensive care. And a day later, the doctor made Masha a diagnosis: bullous epidermolysis, a genetic disease that makes the skin incredibly fragile. Mom was advised to refuse Masha. But my mother did not refuse.

"In general, do they often refuse?" - I ask Lida. “No, they almost do not refuse. Doctors offer such parents, of course. I remember one case when they refused.

I immediately flew out, talked with my parents, with my grandmother. Explained everything. She said that I myself will help that the fund will help. They thought a day and took the child home.

But there are still cases of failures. We now have three refusenings among the wards. ”

For the first six years, Lida tried to find her professional life, helping adults: surgery, oncology, oncopsychology. On the one hand, this is just such hard work as she loves. On the other hand, Lida still tormented something all the time, it was prevented from receiving satisfaction from work. In 2012, Lida came to the volunteer in the Babochka Children, who had just been born (then the fund was called “Bela”). And somehow almost immediately I realized: this is just her, Lidino. It turns out that for complete self -realization, Lida had to work not just with severe patients, with children who seemed to be in the seemingly hopeless situation: “I don’t know how to explain it, but a sense of satisfaction comes because you are making an unbearable childhood life tolerant. Almost, almost the same as other guys. This is not salvation, do you understand? " It seems that Lida is very important that no one thinks about her that she can save someone. Although actually saves every day.

Two weeks after the birth of Masha, Lida first ended up in Perm with her huge patronage suitcase. Doctors spent her to Masha in intensive care. And Lida first bandaged the little girl Ivanov. And the girl first fell asleep calmly. She ceased to be hurt. Now Lida and Masha are found a couple of times a year - in Perm, where Lida comes to Masha to bandage, and a couple of times a year - in Moscow, where Masha comes to planned examinations.

In the apartment of the Ivanovs, Lida is glad. The most amazing, glad and Masha. "She doesn't remember that the dressings are painful?" - I ask.

“He remembers, of course,” says Lida. - But our Masha is already big. She knows that dressings are part of her life. She understands that I am not from evil, that I am so taking care of her. ”

From a large bag similar to a bag, Lida gets bandages, lips, some of his special products: in jars and tubes. Lidina hands take off quickly, but not fussy. Masha is watching them. There is no fear in her eyes: the bandages are soaked and removed, the wounds are wiped, melted, processed. And then a centimeter by a centimeter, fingers, hands, forearms - Lida bandages Masha. They say: "Did you ride in the park on a swing?" - asks Lida. “Mom and I rode on the engine, I ate ice cream, and we are going to the theater,” Masha says thoroughly.

So they say, and Lida bandages, an hour and a half. Sometimes it happens that the “butterflies” are bandaged for five hours, if the situation is difficult. Very small, if necessary, bandage under anesthesia. And with large, Lida knows how to negotiate. When the car is over, I will ask again: “Why doesn't it cry? She hurts. " “She knows that it will end soon. Children cry who do not know what will be now, how long it will end, they cry. ” - "They cry, and you?" - “And I can't cry. If I start crying, I can’t work with my hands. And why am I then? "

Lida says that sometimes he cries at home. And sometimes he does not cry, but simply sits, staring at one point. This means that she was very tired at work, which means there was a difficult child, which means he was very painful:

“You know, I am physically, probably ten times less, I get tired than morally. It happens that I can’t talk to anyone at home. We need to sit and reboot, lay out everything experienced on the shelves. ”

Six and a half years ago, the nurse Lydia Delishevskaya worked in the same clinic with the Genetic doctor of the Babochka Children Foundation Julia Kotalevskaya. The fund then just began its activities, and Julia told my colleagues a lot about what to deal with. “I would like to be a patronage sister of the fund,” Lida once said to the doctor. Kotalevskaya, knowing what a lead of a perfect nurse, suggested that she make a trial dressing with another doctor of the fund. There were no more tests: on the same day, Lida became part of the team.

Now everyone in the fund is sure-this was one of the best personnel decisions ever made. “If something happens and we need to look for another patronage sister? - repeats my question Julia. - It should be such a patronage sister as Lida. This, in fact, should be Lida. Nobody needs another! "

For six and a half years of work, Lida learned all the Russian wards of the Babochka Children, went to all villages, cities, auls and villages where such children live.

And, it seems, it is impossible to scare or surprise with some kind of story. They say that Lida, so outwardly calm and even, can scold the mother of “butterflies” in full, if some purpose is violated and this influenced the condition of the skin. But no one knows a single story when Lida could not establish relations with the child and his parents. Everyone loves Lida.

And she is such loud words - love! - It doesn't really like it. But he says that the worst and intolerable in her work is when the child, whom she bandaged with kilometers of bandages from birth, suddenly died. And nothing can be done, no bandages do not help. “You see,” says Lida, “we, in fact, are deceiving the disease. All the time, new technologies appear on which they make dressing materials, all the time some new operations, now it seems-here Lida spits over the shoulder-the geneticists came up with something that in the future can help someone ... But the children die all the same here and now. These are those cases when we did not win, but the disease. I can’t learn these defeats to take these defeats. ”

And here I read to Lida a piece of one, by the way, by the way, a cannibalist comment on a popular forum. Under a note on raising funds for dressing materials for one baby baby, an adult man wrote that collecting money for such children, bandaging, examining, operating it means to extend suffering. “Stupid and inhuman,” the man wrote. And he is not one thinks so.

I expected Lida exploding.

But Lida looks directly into my eyes. And he says: “Well, who will take a living child to kill? Even if you get into your head that it is so that he does not suffer? "

And it seems to me that the conversation is over, Lida answered an uncomfortable question. But the patronage sister of the Babochka Children Foundation is not one of those people who break off the thought at a glance without expressing it to the end: “Yes, probably when the baby dies in infancy, for the mother this may be easier,” says Lida. “Although one of us would like to check how she feels?” No. But then, when you already live with your child day after day, when to decide that it would be better to die for him? No way. This is the impossible decision from any side. People who raise the question so probably do not understand that thanks to all these bandages, bandages, rags and sponges that stand like the wing of the aircraft, we make the child’s hard life not just acceptable - full: kindergarten, school, pool ... - anything. Can I refuse it? No".

Lida takes a breath, looking out the window. And as if there, in the window, he sees another argument for an unfamiliar compatriot from the forum: “The way medicine is now developing, allows these children and their mothers to hope that they will live to see better times when the dressings are no longer needed. But so far there are only dressings. ” And now, it seems, Lida has finished.

A plane from Perm to Moscow flies for two hours. Aeroexpress, trolleybus, and here is Lida at home. He goes, easily waving her medical bag, as if she had traveled to work somewhere in a couple of metro stations from the house. He greets the old women at the entrance. Do they know where Lida was today, what she is doing at all, what kind of outstanding woman she is? No, they don't know. “I am not the most sociable person,” she says. “And I never tell the first about my work.” Shrugs: "People are different, different reactions."

“Are people mostly good or bad? - I ask. - And how are people from Moscow, for example, differ from Permians? Or from the inhabitants of the Yakut village, where were you last week? " Here Lida, it seems, for the first time, smiles: “And they are not different! All are good. I am a native Muscovite. And nowhere did I see that they somehow treated me like that, or they were very different, ”says Lida. -The cities look different. Almost everything is worse than Moscow. Especially those that are not millionaires, everything is destroyed there: at home, and structure, and medicine. But medicine, you know, wakes up, I feel it right. ”

And Lida is already smiling widely. Six and a half years ago, when she came to some region, the doctors who crowded around the child without leather had at best a bint, Analgin and Levomekol. And they all looked at Lida incredulously: came here, the metropolitan little thing. But Lida went anyway. She unfolded her large suitcase with bandages and lips and explained to the doctors how much can do, how much they can do specifically, so that the children were not so painful.

And here it is incomprehensible whether Lida says so convincingly, or people are really good: in Russia there is no longer a single region where no one has ever heard anything about bullet epidermolysis.