One small force

The twins Ksyusha and Arsyusha were born three and a half years ago. During this time, the girl learned everything that a child of her age usually knows how. Brother learned only to walk and say “ha-ha-ha”. And Victoria, the mother of the twins and another, the youngest, daughter, learned to be strong. But not enough to cope alone

We help the prospects to help

"Ga-ha-ha"

In the hallway I am met by Victoria, her mother -in -law and Arseny. The boy continuously twists a shoe horn in his hands, as if hoping to get fire with his help. In response to my "Hello!" He is distracted for a second and claps my hand lightly on the arm. Mom and grandmother are very happy that the boy greeted the guest.

There is what Victoria distinguishes from many mothers of special children - she does not hide the truth behind a wide smile and ostentatious optimism. Her fatigue, despair, confusion are noticeable immediately, she smiles little and restrained and speaks quietly about her three babies. With the youngest daughter, Alena, the second grandmother is now walking. Ksenia today went to the kindergarten for the first time after quarantine. Her twin brother Arseny missed the lesson in the rehabilitation center and stayed at home-today he and his mom, I have taken interviews.

Arseny and Mom Victoria Photo: Lisa Zhakova for TD

Arseny clumsily runs around the cramped room. Now six live in it: Vika and her husband Andrei, three of their children and who came from another city to help and visit Vikin's mother. And without that, a small room decreased from the abundance of furniture, boxes, toys.

Arseny continues the Brownian movement, accompanying it with an endless song from one vowel. Finally, Vika gives his son his beloved book of Russian folk tales and puts on the decomposed sofa. He watches the illustrations of Vasnetsov and repeats “Ga-ha-ha-ha”. So far, this is the only syllable that he knows how to speak. And even this goose song is an inconspicuous step for all of humanity, but huge for one little Arseny.

“Have you already talked with such children? It seems to me that when you don’t see such children and do not know, it is difficult to understand them, ”says Victoria and explains that Arseny does not dress, does not undress, does not bring a spoon with his favorite food - porridge - to his mouth, does not drink from the cup (the exception does only for a fermented rod), he eats only bread, stuffing a whole piece in his mouth, not understanding that it is necessary to bite away.

Arseniy photo: Lisa Zhakova for TD

The book brings Arsyusha for a short while, and in the silence that came, Victoria talks about how he and her husband Andrei tried to have children for ten years. The first pregnancy occurred after four years of treatment for infertility. “For four years I drank hormonal pills, and then spat, stopped being treated and became pregnant at 29,” Vika is still surprised. Unfortunately, the pregnancy was frozen. And Vika was treated for another four years, while IVF failed on the second attempt. The doctor informed her about the seats of two embryos at once during the procedure, Victoria did not even have time to discuss this detail with her husband.

“In short, planted. And one embryo turned out to be faulty. In the sense - genetically. "

"He was melting before his eyes"

Even after a successful eco, Vika did not believe in success for a long time: "My pregnancy would be beautiful, if not for the fear of losing children, thanks to the incompetent doctors of the female consultation."

During pregnancy, Victoria lay five times on preservation. I came home as to visit, for a week, and back to the hospital. At first there was a threat of detachment of the fetal egg. Then in the hospital they scared that one fruit froze. And a week later, in a paid medical center, Vika was relieved to hear two heartbeat on ultrasound.

At the 34th week, Vika got into Snegirevka (maternity hospital No. 6 named after professional V.F. Snegirev.-Approx. TD ), and the doctors there discovered “problems with Arsyushka”. On an ultrasound, they learned that he had a second degree hypotrophy - weight loss and a lag in growth. The doctor also did not like the placental condition. But the doctors said that at the 34th week there is no need to give birth, which is better in the womb. "Maybe they were afraid for the second child."

Arseniy with mom photo: Lisa Zhakova for TD

The twins waited another three weeks and were born on February 10: first Ksyusha, a minute later Arsyusha. A healthy girl remained in the ward with her mother. Arseny was taken to the intensive care unit for premature children. There he was on the Ivl for a day, under the droppers, ate through the probe-a tube in his nose: he did not have a sucker-gear reflex. A few days later he learned to suck, but he still could not swallow: he was poured a mixture and mother’s milk, and his mouth flowed back from his mouth.

“In the hospital, I ran to Arsyush every evening. And I saw how he melts before his eyes, she was getting less and less. I could neither speak nor breathe from tears. It was some kind of nightmare, ”-and now, almost without restraining tears, Victoria recalls.

On the tenth day, Arseny had a sucking reflex, and then it could not be torn away from his mother’s chest. So he got out.

"Half"

In two months, the twins were brought to the clinic for a planned examination. The neurologist, barely seeing Arseny, realized that he urgently needed to genetics. Before that, none of the doctors noticed external signs: the ears are located just below the usual, widely arranged eyes and folds under them, high palate, small hands. Separately, any person can have such features, but when they are gaining 5-6 or more, this is a sign of genetic problems. At the stage of pregnancy, Vika’s genetics tests were normal. In the hospital, a blood test in newborns is taken only on known genetic diseases, and Arseny's disease is not one of them. They began to be examined. In the medical and genetic center at the Tobolsk parents they did not say anything for a long time. And then they made a photocopy of one paragraph from some medical encyclopedia. The paragraph was called “Tetrasomy of the short (p) shoulder of the chromosome 18” (extra half of the 18th chromosome.-approx. TD )-and all the described symptoms coincided with the symptoms of Arsyusha.

Arseniy photo: Lisa Zhakova for TD

At this moment of the story, Arseny lost interest in the book and began to look for what else to occupy himself. He needs a constant change in the situation, actions, games. He is always in motion. Having found a machine with a flashing machine in the box, he does not roll it on the floor - he does not know how. Instead, he turns the wheels with his fingers and licks them, leaning out the tongue far away. Vika explains: “This stereotype is repeated movements. He twists and licks, twists and licks not because he studies objects, but because he reassures himself with this. This is how children with autism. But the psychiatrist said that this is not a races, but mental retardation. ”

Arseny has organic brain damage. “A very popular neurologist Nurok Marina Yuryevna sent us to an MRI to find out which area of ​​the brain is affected. After that, it will be clear what to stimulate and whether there is something to stimulate there. And she said. Imagine? " - Vika even shudders with indignation.

Since the MRI babies are carried out under general anesthesia, Vika has been preparing morally for a long time, weighed pros and cons. And she agreed. As a result, nothing cleared up. In conclusion, organic damage to the brain is listed, genetically determined; Children's cerebral paralysis syndrome, periventricular leukomalation (the form of damage to the white substance of the cerebral hemispheres in children, one of the causes of cerebral palsy), epilepsy and much more. Vika was disappointed, she hoped to find out what share of Arsyusha's brain suffered.

Arseny with mom on a walk photo: Lisa Zhakova for TD

At this moment, Arseny almost falls from the couch (and he just was on the floor). Vika, bending with some fantastic arc, manages to catch him and softly reports: “Arsyusha, it’s impossible. You repeat your sisters, ”and explains to me:“ These are the girls jump on the couch. ” Now not folding it, broke - jumped. ”

Vika includes a TV with a developing cartoon. Show different animals. When someone especially likes Arseny, he is pressed face to the screen. Judging by his reaction, most of all he sympathizes with the wolf. And even howls it seems when mom turns off the TV.

Since Arseny clearly competes with the eternal engine, our conversation consists of short stories, undercuted thoughts, fragments of phrases.

"I'm ashamed"

Arseny and his sister, of course, are different: both externally and in character. Ksyusha considers the brother the youngest, only does not understand why he is above her. The girl is sociable, on the sites she is always looking for friends. “She would definitely tell you a bunch of different stories in her broken children's language,” Vika smiles. Ksyusha loves tasks, with joy he receives them and carefully fulfills them. She is very curious, and mother hopes that with age, her daughter will not lose his desire to know the world.

“It is a pleasure to deal with Ksyusha. And I go with Arsyusha as for hard labor, because I practically do not see the return. You have to keep yourself in your hands so as not to scream. But nothing, we have time. I have to at least somehow justify my pedagogical diploma. ”

Arseniy photo: Lisa Zhakova for TD

When all children's centers were quarantined, Vika began to deal with Arsenia even more. And he learned to fold the pyramid and clean the toys in a bucket. “An ordinary child knows how to do it a year. And I'm waiting for him to start talking. I'm waiting for it to walk well, - Victoria's voice trembles. - Do you know what doctors say? That they do not deal with the child at all. And I do endlessly with him, and myself and specialists. And still I am ashamed that I can’t devote even more time to him. ”

In a chat for parents of children with disabilities, Vika found her mother with the same half half of the 18th chromosome. The girl is seven years old, her development is like that of a three -year -old. Her mother supported Vika and taught acceptance. “And I can't accept it. I don’t even post with him anywhere, I don’t want to. But I decided that this is my cross and I will carry it, ”Vika does not restrain him, and, despite her apparent fragility and weakness, I understand that she will not give up and that her strength is measured not in Newtonians, but in the maternal instinct.

"I can’t imagine how I can do it"

Arsyush sleeps in the crib by the window, the same near the opposite wall is Ksyushin. Dad moved to a chair-bed, because Alena took his place next to his mother. This smiling coquette has just returned from a walk, capturing part of her mother’s attention.

The new pregnancy of Vicki has become a real “kinder surprise” for everyone. Vika was not afraid that the child would be like Arseny, but she was afraid to tell her husband, she thought he would ask for an abortion. Andrey, on the contrary, was very happy.

And Vika admits that her pregnancy coincided with depression. The son managed to devote less time, and then, in a year and three, he finally crawled: “I was in a panic, I thought how I would take Arsyusha to classes in a rehabilitation center. My mother lives in another city, the mother -in -law works in three jobs, buys foods, cooks and removes, she has medical problems, she often goes to the clinic. ”

Vika began to look for her assistants. And she found them in the charity organization "Prospects" represented by curator Svetlana. She came from the other end of the city, helped a pregnant Vick to drive Arsyusha and Ksyusha to classes. And on walks, volunteers intercepted the baton.

Arseny, Ksyusha and Victoria Photo: Lisa Zhakova for TD

“I am so grateful to them. I didn’t even think that people who have their own families, problems, stories are ready to help others, to sacrifice their time. And in response to my gratitude, they answered: “We are pleased that we helped you. We understand that for you this walk is a whole event.” And this is true, because we walked like this: Ksyusha runs away, Arsyusha crawls along wet dirt. He had his palms dirty like feet, and his knees were in abrasions and bruises, although I put on his knee pads for dancing. ”

In the company of Vika volunteers, despite two more kids, she took Arseny for rehabilitation, massages, the pool, and at two years old Arsyusha went. With three different children, Vika has no time at all. Only once a year she gets out for her friend's birthday. Now the biggest problem is Vika - the delivery of children to kindergartens. No one has cars in the family. Ksyusha and Arseny’s kindergartens are different, you can get from one to the other only on a trolley bus with a transplant, and there is no one to leave at home one and a half year old: “I can’t imagine how I can handle it all.”

As if in confirmation of her words, Arseny bites Alena by the finger. Alena cries, Vika apologizes to her. Kusaku-Braita is pitying the grandmother.

I understand that it's time to leave, and not get confused underfoot. On the way back, I think that Arseny might not be. But he is contrary to everything: infertility, difficulties during pregnancy, his diagnoses. I also think that Arseny really needs his mother, because, besides her, no one will save him from falling from the couch, will not feed his beloved porridge, and will not calm him down at night. And Vika will definitely cope, she just needs to relax. To do this, you, our caring readers, just need to arrange a monthly donation to the charity organization "Perspectives". And then her specialists and volunteers will continue to help the deadly tired mothers.