Personal experience

"My son is a butterfly child"

Two years ago, Muscovite Ekaterina Kozynda adopted six-year-old Nicholas. The boy has a special skin: with any touch, bubbles and erosion form on it - because of this, people who live with epidermolysis bullosa are called “butterflies”. Catherine told Life around about how she fell in love with Nick at first sight, how she learned to care for his skin and how to dissuade her from going to St. Petersburg.


Elena Barkovskaya


Daria Globina

About adoption and adaptation

I never thought of adopting a child, but once I was leafing through a Facebook feed and saw a post with a photograph of Nick. And she stopped sleeping soundly. Constantly waking up, thinking: "Suddenly he was already taken?" Nick’s illness, bullous epidemiolysis, I didn’t attach any serious significance - I couldn’t even imagine that for someone this could be the reason for Nicholas's refusal.

I saw the photo at the end of December, and after the January holidays (the numbers of the 7th or 8th) I went to St. Petersburg to the orphanage at the Christmas tree - as a guest. I remember sitting in the director’s office, the door is open, and at that moment Nick is led past. He was wearing a blue satin waistcoat that would fit on our teddy bear now - he was so small. I almost burst into tears at that moment.

Six months later, at the end of June, my friend Harry and seven-year-old son Gosha brought Nick home. He went into the apartment and said: "Can I go to another group? I don’t like it here." I was frightened, explained to him where the bedroom in which we will sleep. “I'll never fall asleep here,” Nick said. And until eight in the morning really did not fall asleep.

All the games that Nick started with us came down to one thing: it was necessary to prove how dear he was to us, that we did not want to part with him

Nick’s adaptation was classic - they told us about her in classes for adoptive parents. The child comes into the family and tests it for strength: how much they love him and whether they can return him. All the games that Nick started with us came down to one thing: it was necessary to prove how dear he is to us, how we want him not to go anywhere. In the first month, Nicholas made a strong request to Peter (but in fact he wanted to hear from us that we would not send him back to the orphanage - this was also explained to us at the adoptive parents' school). Nicholas opened the freezer, as if it were his car, and said: "I sit down, go." I asked: "Where did I go?" "To St. Petersburg". - "For a long time?" - "Forever and ever". I said that I would not let him go forever, only for half an hour. He smiled: "Well, I'll be back in half an hour."

This game lasted all day. In the evening, Harry came from work. He had dinner in the kitchen, and I did something in the bathroom. I hear Nick goes to the refrigerator and says: "Harry, but I got a car!" Opens the freezer: "I went." Harry asks: "Where?" "To St. Petersburg". Harry, thinking about something, continues to eat. Nick does not stand: "Forever!" Harry replies: "Well, come on." Nick immediately slammed the fridge, ran to me: "I will never be friends with Harry again!"

The teachers also said that the child must go through stages that he did not live in his time. For example, in the orphanage, there were no drawers in the cabinets, there were only shelves. And Nick - an adult and conscious - at home slammed doors, a refrigerator, pulled things out of drawers. But if you stop it and prevent it from performing these actions, it can be covered even in 30 years.

Once we were going out with Nick somewhere, and Harry had to give us a ride; he was in a hurry to work and did not want to be late. Nick had to put on a sweater, but he asked me: "Can you go out, will I make you a surprise?" - I wanted to get dressed myself. I went into another room and suddenly I heard a scream. I run in and see that Nick fell and sits on the pope. He was very upset - not because of the fall, but because the scandal was about to begin: Harry was late. I told Harry to leave. "No, I'll wait for you, take your time, bandage yourself." We bandaged, we leave. Nick became quiet and when I put him in the car, he said: "Now I know that you love me." It was a turning point.

About the disease

When we took Nick, the disease was in the background - we were more worried about adaptation. The dressing question arose when we brought Nick home: we arrived at night, and I bandaged him the next day. At first it was scary. A day later, a nurse of the Butterfly-Children Foundation came to us to help with dressings, plus Nick told me: take it, put it on it, give it a shit. At first the dressings were very long: I persuaded Nick, bandaged, took a break for half an hour, then again bandaged, took a break. Dressing ended in the evening. Now it takes us an hour and a half to dress the whole body - and so every day. Most blisters appear just like that, not from injuries, so it’s better to inspect the skin once again and notice the blister while it is small.

At first the dressings were very long: I persuaded Nick, bandaged, took a break for half an hour, then again bandaged, took a break. Finished in the evening

Nicholas has a dystrophic form of bullous epidermolysis, a severe course, but, thank God, the organs are not damaged. If not for the skin, he would be an absolutely healthy child. Of course, we want him to have no wounds at all. We are constantly experimenting: a couple of days we smear with one remedy, then another. I have my own know-how, I started to sew - when I make a collar, I sew it in the back. In early April, Harry went to the hospital with Nick for two months and bandaged him there every day - and he developed his own schemes.

When we took Nick from the orphanage, he walked poorly. Harry changed the car to fit a wheelchair. Thank God we didn’t buy a stroller, otherwise Nick wouldn’t get down from it. I had to make him walk, and at some point I saw that he climbed into a chair: knelt down and got up myself. Six months later, Nicholas walked like everyone else - he ran, jumped, danced.

Do they turn to Nick on the street? I don’t notice, to be honest. But most likely yes. He doesn’t care, it seems to me. And I like it when they examine it - I feel like a mom of a superstar.

Nick wants to be a soccer referee. If someone at home says something wrong, he can come up and give a red card

About study and hobbies

When Nick was seven years old, we took him to a comprehensive school - the same where Gosha goes. Nicholas had a very good class: the teacher put him next to her, the guys helped - they served something, carried a backpack. The room itself was on the third floor, it was necessary to periodically move between floors, and first-graders were active - even Gosh was demolished somehow from the stairs. We watched Nick for a week or two in the corridor, but we realized that it was hard: things weren’t done at home, Harry had to work. Plus it was necessary to bandage very early: we got up at six in the morning in order to catch classes by 08:15. We stopped going to school.

In late December, we were offered to go to a Christian gymnasium. It is paid, and the classes are very small - five to six people. They study there from nine in the morning, that is, it was possible at normal times to wake up and bandage. Nick joined the class from day one, learned to read and write in a week. A teacher in the Russian language awarded him the title "The Most Raised Child of the Gymnasium." A friend, by the way, told me how she drank tea with Nick in the kitchen. They chatted, he got up, said: “Thank you for the conversation,” and went about his business.

Now Nick is deeply immersed in the football theme, watching Match TV from morning till night. He wants to become a football referee - he knows all the rules, he has cards. If someone in our family says something wrong, Nick can come up and give a red card.

About Gaucher and Love

Gosha found out about Nick before anyone else. Just before the New Year we were at the cottage, and I showed him the video: "There is a boy in the orphanage, do you think we can take it?" He replied: "Yes, let's take it." They met when we went to pick up Nick: they laughed all the way to Moscow, sang songs.

In the first month, Nick always called me Katya. Once we were driving in a car, the guys were sitting in the back, and Gosha said to Nick: “What do you call her all the time Katya? She’s your mother.” I was just numb. Or once Nick got nervous, said Gaucher: "Actually, this is my mother!" And instead of saying: "No, this is my mother," Gosha replied: "This is not your mother, but ours." I thought: "What a cool son I have, such a core inside."

One day I put Gosha to bed and asked: "You didn’t regret that we took Nick?" He replied: "What are you! I began to see you more often." I used to work a lot and almost never saw him. When we spent time together, it was a holiday. It’s good that Nick appeared - I at least recognized Gosha for real. Maybe I would still work without Nick, and Gosha would be raised by grandmothers.

It happens that Gosha and Nick are arguing. Moreover, when everyone is calm, they can go about their business in different rooms, and when they quarrel, they sit down nearby. They also had a serious conflict: Nick intentionally broke Gosha's favorite gun. It was just during the adaptation of Nick. Gosha burst into tears: "He breaks everything, I forbid him to touch my things!" I said then that even a thousand toys broken by Nick are not worth it in the orphanage, and Gosha's tears immediately dried up. Nick is absolutely native. Incidentally, he periodically says to me: "Finally you gave birth to me."

Life around thanks the Butterfly Kids Foundation for helping prepare this article.

Watch the video: Ryan Reynolds & Jake Gyllenhaal Answer the Web's Most Searched Questions. WIRED (November 2019).

Popular Posts

Category Personal experience, Next Article

Confederations Cup - 2017: how it works in Sochi

Confederations Cup - 2017: how it works in Sochi

The Russian resort hosts four FIFA Confederations Cup meetings - like the other three cities: Moscow, St. Petersburg and Kazan. The maximum number of games within the framework of KK-2017 at the Sochi stadium Fisht can be held by the German team. In anticipation of the tournament, the city was first empty, after which it was full of visiting fans.
Read More
"Flowers" appeared in Moscow

"Flowers" appeared in Moscow

Vending machines with flowers were installed at the Afimall City, Golden Babylon shopping centers, as well as at several Perekrestok and Seventh Continent supermarkets. The device is equipped with a climate control system, and all the bouquets are stored in bottles with a special antibacterial solution that keeps the flowers fresh for several days.
Read More
In "Aviapark" opened a store of farm products SeasonMarket

In "Aviapark" opened a store of farm products SeasonMarket

On the ground floor of the Aviapark shopping center, opposite the entrance to Auchan, a SeasonMarket farm products store has opened. This was around Life around representatives of the site. Before the store opened, SeasonMarket products could only be bought in the online store of the same name. The store’s suppliers are mainly Russian farms and manufacturers from Kostroma, Krasnodar, Susanin and Galich.
Read More