"Walls of crying and prayers"

When Oksana and her husband took Ksyusha out of the child’s house, she quickly became part of their large and loving family. But sometimes one love is not enough - you need help

Help a house with a lighthouse help

On that August day, Oksana cooked in the kitchen and watched her younger daughter with one eye. While the two -year -old Ksyusha was sitting and playing, it was necessary to have time to cook food for a large family - her husband and Ksenia brothers.

At some point, Oksana noticed that her daughter was lying on the floor: recently, Ksyusha invented such a game-she went to bed, waited for her mother to approach her, and then jumped up. But this time everything was different. Oksana noticed that her daughter was not breathing, and rushed to the rescue, after a few seconds Ksyusha came to her senses.

Struggle

During the previous months, Oksana and her whole family went through a lot: Ksyusha did several operations, but complications began, hospitals, tubes, and procedures were drawn in a series. Ksyusha stopped eating herself, breathing, but mother and doctors stubbornly fought with her illness, did everything so that Ksyusha lived.

More than two years ago, Oksana, a 42-year-old trading representative from the Moscow Region, lived an ordinary life: waking up in the morning, gathered her sons in the garden, did work affairs during the day, took the boys, rode home. “We live in a village, in a private house, and before we constantly had guests, the constant movement of people in nature,” says Oksana. The family could break on a car for a day, just gather and leave.

Ksyusha and mom read the book Photo: Natalia Platonova for TD

In December 2017, Oksana thought about taking the second adopted child. By that time, three sons grew in the family, so Oksana did not immediately want a girl. In August, she first came across a questionnaire on Ksyushin - the girl’s face was “smeared”, there were no details in the stingy text - and closed it: then the family was still not ready. But she remembered the baby and after a few months she began to look for her again, including in other databases. And she found: in other photographs it was clear that Ksyusha had “something wrong with the face”-it was strangely swollen. According to the photograph, the woman “slaggil” is an approximate diagnosis - lymphangioma, a benign tumor, which is often found in children. In this case, due to the disease, the walls of the lymph vessels grow, but such a tumor cannot give metastasis. There is treatment, there is no immediate threat to life.

Ksyusha in the game hospital of the children's hospice "House with a lighthouse" Photo: Natalia Platonova for TD

And even then Oksana and her husband decided - they will take Ksyusha. And they did not change their minds even when, a few days later, Oksana arrived at the child’s house and passed, cringing, under the sign of a “specialized child’s house for children with organic lesions of the central nervous system with mental disorders”. When they brought her a tiny bundle: at ten months, Ksyusha looked four, and Oksana stayed with her daughter for ten minutes, and then she was carried away - "they didn’t even give her in her arms." When she left the child’s house in cold December, sobbed and called her husband. When the nucuable diagnosis was confirmed, it turned out that Ksyusha’s lymphangioma has been from birth, but it is impossible to operate due to low body weight. Oksana and her husband talked with doctors, read articles, forums and decided completely: now Ksyusha is their daughter.

The other side

At first, Ksyusha got used to the family. But once, three months later, Oksana woke up in the morning and saw that Ksyusha was standing in her crib and looking at her with love. “It is impossible to confuse with anything,” she recalls. - In her gaze was love. And since then she is like now: she is in the family. ”

Gradually, Oksana found doctors at the Dmitry Rogachev National Medical Research Center, they offered to treat Ksyushin with a lymphangioma with a minimally invasive method - without surgery, using sclerosis: drugs are introduced into the tumor and the formation is reduced. Treatment was to be carried out in several stages, but at the beginning the girl became worse.

Ksyusha plays on the windowsill in the house of the hospice hospital “House with a lighthouse” Photo: Natalia Platonova for TD

The drug did not fit, the tumor blocked the larynx, it became difficult to eat Ksyusha and breathe it itself, so the doctors put the tracheostoma and gastrust. Then Ksyusha carried several operations at once.

“When Ksyusha was lying in the hospital, I first encountered in life with something so hard, I saw these walls of crying and prayers,” says Oksana. -Before that, we lived on the other side of such problems, and when you live somewhere there, you either do not think about this, or forbid yourself to think. Probably, Ksyusha came to us to teach us to appreciate and love life. ”

Love

In the summer of 2018, Oksana went with Ksyusha to help relatives. Accidentally breathed gas, fell into intensive care. The doctors in the hospital then told her-Ksyusha saved the filter in the tracheostoma, and she herself should not survive: “Now much that seemed to me once important, has become unimportant. I look at everything from the other side. For example, when I quarrel with children, I understand that all these school problems, all this does not matter, but this special, your dear child who does not work out is important. ”

Ksyusha in the game hospital of the children's hospice "House with a lighthouse" Photo: Natalia Platonova for TD

Caring for her daughter, sometimes Oksana was tired that she wanted to “just get up by the wall and fall asleep”, but there was no doubt about the correctness of the decision - so the family voluntarily entered the “walls of crying and prayers” and fell in love with Ksyusha.

Ksyusha and mom dance flamenco photo: Natalia Platonova for TD

In the morning, brothers who want to kiss the sister run into the parental room, the fees at the garden and school, breakfast, Oksana and Ksyusha are escorted, and they meet in the evening. Ksyusha and his mother learned the tongue of gestures, now, having heard that dad had come, she gestures to her mother that she wants to swim.

But sometimes one love is not enough.

Help

In August of this year, when Ksyusha began to stop breathing, Oksana decided to contact the children's hospice “House with a lighthouse”: “ I had, of course, doubts-that only very difficult children lie in the hospice, as we will turn there, and suddenly the help we will provide, someone else needs more.”

Ksyusha runs around the Hospice Cabinet, breathing noisily, an anchics breaks out of the tracheostoma. He spins on the couch, tries to climb onto the closet, cunning and does not want to get off his hands, turns toys in his hands - outwardly, she is no different from any other two -year -old girl, except for the visible swelling of her cheeks.

Ksyusha plays photo: Natalia Platonova for TD

The hospice bought a ksyusha aspirator to suck sputum from the respiratory tract and saliva, and the pediatrician Tatyana Shubina advised her parents to put a pump that would supply food in the stomach with a dosage-this helps to prevent part of breathing problems. Once every two weeks, a resuscitator comes to Ksyusha, once a week-a nurse, a pediatrician comes once every one and a half to two months.

“At planned examinations, I track the condition of the child, observe which dynamics: positive or negative, we check with my parents our special styling in case of a crisis situation, so that at home parents can provide first aid, repeat how to use which equipment. If I understand that the dynamics are negative and the child is leaving, we discuss with the parents how much they want to help: do they want the child to stay at home, so that the child is renowned to be transferred to the Ivl apparatus, ”says Tatyana Shubina, pediatrician-pediatrician Tatyana Shubina, who oversees Ksyusha. “They make a decision themselves.”

The working day Shubina usually consists of two or three visits: it takes two to three hours to one visit: inspection, conversation with parents, plans, equipment checking. In addition, a whole team works with Ksyusha and other children: a nanny, psychologist, social worker, lawyer.

Ksyusha photo: Natalia Platonova for TD

So the Oksana family learned that there is life in the "Wailing Walls of Crying" and it is not so different from the usual one. Oksana and her husband and children are still driving at the sea-only now in a children's stroller to the beach and in a cafe for Ksyusha the aspirator rides, all the same, although less often, arrange home holidays, make plans for the future.

Now, under the care of the visiting service of the children's hospice, 609 children and young adults from zero to 25 years old. The wards of the fund have a variety of diagnoses: oncology, genetic diseases, organic central nervous system lesions, the consequences of injuries - each of them really needs help. Please support the work of the hospice, and then Ksyushin and other families will be able to continue to live an ordinary life even in the "walls of crying and prayers." Thank you.