Be an astronaut

Ira is very happy. But, not at all according to the writer Leo Tolstoy, her happiness is not at all equally with the happiness of other happy families. Ira presses Tai: Taya is the second child of Ira, but the first, whom she with all the power of maternal love can press to her chest

A compromise option

“I didn’t think that motherhood is ...” Ira looks around, trying to choose the exact word. Finally finds and exhales, - such carelessness ... "

Ira smiles. And her hands feel tiny Taisia: they stroke the back, tickle the heel, adjust the diaper. “It had never occurred to me before that motherhood is not a depressive hell,” says Ira. At that moment, Maxim enters the room.

Armed with the telephone, Max commands a combat detachment, arranges an ambush and finally wins the battle: “Wow, Mom, look,” Max shouts. Ira is distracted and a little angry. But he immediately recalls: “By the way, Maxim came up with the name of Taisiya. I watched some kind of film, came and said: “She will be called Taisia.”

- Is it true? - I am asking for Maxim.

She shakes his head negatively, not looking up from the phone:

- I generally think that the best name is an antelope. Taisiya is a compromise option.

The seven-year-old Max Kutin, the eldest Irin's son, bullous epidermolysis, he is a “butterfly boy”. The skin of such children is so fragile that it is damaged and injured all the time; And the mucous membranes and internal organs are also wounded. Maxim’s arms and legs are tied with special bandages, on the face and body of the wounds: some heal, new ones appear. So it will be all your life. Bulleous epidermolysis is a genetic disease. The appearance of such a child in a family in healthy parents means that both parents have a damaged gene. And then with a high degree of probability, subsequent children in the family can also be “butterflies”. Therefore, the firstborn, as a rule, forever closes the issue of the second or third child in families. It’s scary to give birth to new children in such families.

Not a tear

"Have you wanted another child?" - I ask Ira.

Max is responsible for her : "Who is how." And we all laugh. It turns out that the seven -year -old Maxim is very embarrassed by diapers and nipples, but especially - the scampers of Taisia ​​with all their contents. “Max is squeamish,” Ira smiles. “ He’s generally very squeamish . ”

The fact to give birth to a second child, Irina Malyavina and her husband Stas Kutin, after the birth of Maxim, rarely thought. And if they thought, it was purely hypothetically. “I remembered too well what hell was my motherhood: I could not stroke or hug my son, I could not wallow with him in bed, breastfeed and toss up in my arms, you know how they showed in rollers about a happy life. In general, I took him in my hands only in three months! I hardly remember what happened to us, but I remember the constant fear and the Morok that I will make my son pain, that something will happen, that the world will collapse, ”says Ira.

When seven years ago Maxim was born in Yelets, his hometown of Irin's parents , the family had a clear n lan. Only the baby will be born to AK , Ira and her son will come to the Kaliningrad region to Pope Stas, he is a soldier, an air defense officer. But Maxim was born, and they did not give him to Ira: they took it to intensive care. There, the baby spent three weeks for which he was diagnosed and brought to his mother’s information: this is not treated, this is forever.

Irina and Maxim Photo: Foundation "Children-Babochka"

“I lived in a permanent nightmare. Maxim was lying in one hospital, then in another, the doctors around said: “Oh, it would live with this form for up to three months if you are lucky, and then - that's it.” On the forums on the Internet they wrote: “Dads always throw sick children,” but I can’t return to my husband and have to live with my parents because of Maxim’s disease! I remember that I was sobbing for hours: I so wanted to be happy, I was so happy, I married a man whom I loved, believed that we were giving birth to a child, we will enjoy life, travel ... And then all these plans collapsed. ”

In the family of parents, Ira spent a year and a half, at the very beginning of which a fund for helping children with bullet epidermolysis “Babochka children” appeared in them with the maxim of life: they helped with expensive bandages, and taught the video tutorials to bandage Max. I ask: "Shouted?" And then Maxim answers again: "Believe, not a tear!"

“In the very first months, I realized that I should pull myself together and accustom his dressings,” says Ira, “at first our grandmother helped - she is very combat: she holds the child , I pierce the bubbles, or vice versa, I hold it. They learned to feed through the tubes when there were ulcers, learned to process the wounds ... I learned everything. But I wanted to my husband, I wanted to live a family. "

Fate

Cheez Polt about RA of the year Irina took her son, sat on the plane and flew to Kaliningrad. To Stas. Stas honestly waited for his wife and child. And they decided to live as they planned: usually, that is, happily. With bandages and dressings, with difficulties and joys, but - all together. At three years old, Maxim went to kindergarten as all ordinary children.

- Was it scary? - I ask.

“It’s scary,” Ira replies, “but I realized that if I keep it at home, then everyone will be worse.” And to us and him. Yes, it turned out that he has a serious illness, but he is alive! He is a normal kid who needs peers around, friends, and not four walls of the official apartment.

Irina and Taisiya Photo: Foundation "Children-Babochka"

Around the same time, Irina called the Babochka Children and asked what they and Stas were thinking about the second child.

“I said that I won’t pull the second child with such a disease as Max, I am not a hero,” says Irina. - Then they said that the fund will soon have a new project: the IVF program with genetic diagnostics of embryos - this is when doctors can guarantee that the next child will not have bullous epidermalization. This was done in the world, but in Russia with bullous epidermolysis, never. And so they told me that quite a few families were selected for the project, and ours - among the first. I did not ask why. I just thought that probably fate ... "

Without fear

The essence of the unique project of the Babochka Children Foundation was that the couple who agreed to participate in the program does the IVF procedure, conduct a genetic analysis of the obtained embryos and select only those that do not have a “broken” gene leading to bullous epidermolysis. One of these embryos plants to mom. And then - pregnancy as pregnancy, childbirth and baby. Only Ira and Stas were supposed to be the first such parents.

“ It was not even some action, it was a process that eventually stretched for three years ,” recalls Irina. During this time, she, Stanislav and their son Maxim made the necessary genetic tests paid by the fund ; Psychologists and specialists from the “butterfly children” spent a dozen conversations with the family, answering all questions in detail. And fear, not even arising, left. But I still ask again:

- Was it scary?

“No,” says Irina. - In the end, there was no special fear. There were ordinary fears of pregnant women: suddenly something will be wrong-with me, with a child. But there was nothing special in this. Only patience and faith were required of us. And we suffered and believed.

Taya wakes up and grunts. Ira kisses her forehead, then rubs her nose on her nose, then, although everything is in order, feels all the buttons on the slider, strokes the heel, tickles the palm. Taya looks at her mother. Mom hugs her even more. Max is suitable. He does not touch. He looks at her with curiosity. Then he spends his bandaged hand along Taina’s leg. Departs.

Maxim Photo: Foundation "Baso Children"

- How does Taya react to Max? - I ask Irina.

“He examines,” laughs. - She already learned to endure his dressings even, can you imagine? Taika herself is only a swaddling at night - so we have a free person. But she already has an obligation: wait until I bandage Maxim. Usually at this moment dad is engaged in her. But if he is not there, she can lie down calmly, the main thing is that she was sleepy and fed and does not distract us and Max until we bandage. But we, of course, can already do everything quickly.

I ask Max:

- Do you love her?

Answers severely:

“I'm not used to her yet.”

I ask Ira:

- Are you happy?

Answers:

- Yes, I did not immediately understand this, but I am happy. It’s strange to talk about this, but ... Ira is silent.

Now for yourself

Ira looks out the window. The Kaliningrad embankment, which was previously a swamp, and now - beautiful and comfortable, is visible from the window. “I like to live in Kaliningrad so much,” says Ira. - I say to everyone with my own: “I live in Europe, and you - as you want.” We laugh.

Max leaves the room to put a kettle. And Ira, turning around, suddenly says: “You know, it seems to me that I only now understood the importance of what happened. I am the first woman in Russia, whose first child is sick with bullous epidermolysis, but who knew that she became pregnant with a precisely healthy child, endured and gave birth to him. This is a miracle. In the case of this disease, this is true. And it is very important that this miracle can happen now with others. With people who desperate, lost hope, with those who could not think about having a second child, because the first -born disease took away all his strength and killed hope. ”

Irina, Stas and Taisiya Photo: Foundation "Children-Babochka"

Ira is a little silent, and then, looking at the door, from which Maxim is about to appear, says: “I am an adult and I understand that one day, when Maxim is needed, my dad and I will not have much strength to help him. I hope Taya can. And it is very important for me to know about it. ”

While we drink tea, Ira talks about the fact that now she shares his experience with a woman who has to give birth to a child according to this program.

- Is she afraid?

- Yes, everything is like everyone else. We, we know, do not understand to ourselves that we, as astronauts, open a completely new world for people. We just live our life and try to be happy.

After tea, Ira, Max and Taya are going for a walk. Max, to be honest, does not like to walk. It only agrees if a trip outside the city shines. Taya sleeps well in the car. Therefore, the baby with car seats and stroller is loaded into the car, and mother and children go far, far, to the forest on the lake. “There,” says Irina, “it’s good for us.” There we are on our own, we do not belong to anyone. ”