Decide for happiness
By the decade of “Tradition”, we decided to collect the stories of our wards and tell how they live now. Arina Chaban is a schoolgirl from a small town of Khmelnitsky, who underwent surgery to correct scoliosis two years ago.
Internet in the country is an unreliable thing: Skype works with some thoughtfulness, and the picture does not appear right away. For the first couple of minutes we shout to nowhere the standard “Hello, hello, can you hear me?”, And then we manage to see each other. On the one hand, Arina and her mother Tatyana on the other. They are very beautiful and excited: they prepared for the interview for a whole week.
Today's main character Arina has long wavy hair and a shy smile of a man who knows something very important about our world. She is fifteen years old. Two years ago, she underwent a very complicated operation: her spine is supported by a titanium construction, for the installation of which 995 thousand rubles were collected for two and a half months. In a girl, spinal muscular atrophy is an incurable genetic disease that Arina’s family has been struggling with every day to this day. Breathing exercises, massages, physiotherapy exercises in the clinic – and all this in order to live almost the normal life of a schoolgirl from the city of Khmelnitsky.
But Arina has no time to complain: over the summer she decided to read all of Ray Bradbury, and Tatyana points to an impressive collection of books by an American writer. Also on her list is Remarque and “Singing in the Blackthorn” by Colin McCullough – Arina is responsible in her choice of literature. Now the family lives outside the city, and Arina has a lot of free time to master all the authors. Ahead of the tenth grade, but so far you can not think about grades, let alone exams.
She loves literature and art, is not afraid of historical control, but the main hobby of Arina is painting. In April last year, her exhibition was held in the city council, and the mayor of Khmelnitsky even sent her thanks for the active creative search and artistic activity. Of course, he thinks of acting in absentia as an art critic: it is important to join the tradition. As befits the creator, Arina appreciates contemplation and peace. Sometimes she asks her mother to leave her alone, and she understands everything – also an introvert. They relate to each other with great undisguised tenderness and give the impression of sisters.
Arina with mom Tatyana
Mom has an economic education, but when Arina was eight, she left work and began to work with her daughter: “I had to put ambitions aside. But God puts everything in its place. The main thing is health. ” Tatyana notes that she doesn’t care what university Arina herself enters and what profession she will choose in the future – the main thing is that she and her dad, grandparents will be there and will always support with everything they can. When I ask what was the most difficult thing for her in raising a child with an incurable diagnosis, Tatiana replies that all difficulties fade into the background, or even disappear altogether: only love remains. “Arina united our entire family, we are now in a ball, where everyone is connected to everyone,” she says. Love is not taught at any university – and when, after surgery, the daughter's spine straightens for as much as twenty centimeters, is this not the growth that you can only dream of?
Speaking of dreams: Arina wants to travel. While the teachers come to her house, and it’s rather difficult to load the stroller into the car, you have to wait for father’s weekend – but the future art critic Arina would like to see the paintings, which can only be read in books now. Is it possible that in twenty years the famous cultural figure Arina Chaban will give a lecture in the Hermitage? Why not! The most incredible thing has already happened: she sits in a chair straight.
In patients with spinal muscular atrophy, the internal organs contract and cease to function over time, but surgery to correct scoliosis can save the heart and lungs. Moscow surgeon Andrei Nikolaevich Baklanov agreed to help at the Center for Spinal Pathology. Khmelnitsky doctors discouraged Arina and her mother from the operation for a year – they warned of the possibility of death due to anesthesia. Then it seemed an unbearable amount of almost a million rubles. The family was afraid, worried, but in the end decided: they collected the necessary amount, and on May 16, 2017, Arina began a new life in which she could breathe herself.
The disease has not receded, it is still here and requires daily efforts, but now Arina does not have to feel constant pain. “We had two roads,” Tatyana recalls. – Either we do nothing, or trust our doctor, take risks and go for surgery. We are very glad that everything ended well: we still remember all-all-all who helped us. Arinka has become much more fun! This deformation of the body, especially for a teenage girl, is difficult not only physically, but also psychologically – and now we have almost flattened the back and increased the vital volume of the lungs. These are very significant changes for us. “To some they may not seem so big, but we rejoice in them and are grateful for them.”
"Operation? Well, that was awesome! – Arina as if recalls the impressions of a summer camp, and not a Moscow hospital. “The right hand does not listen a bit, but I try,” she adds, “everything is in order.” She holds the pencil with two fingers, adds a third and writes: slowly, but she does it. Raise your hand, drink a glass of water – such seemingly everyday actions are extremely important for Arina and mother. This is a small victory: to do what an ordinary person does mechanically.
They really try – take selfies, listen to music, do what they love. I would like to visit some kind of art exhibition, but Khmelnitsky is a small city, and such events rarely happen there. Arina used to try to send paper letters in search of friends from other places, but negligent recipients did not answer: very disappointing! “Arina will write a message on three sheets – and nothing,” Tatyana sympathizes. But the daughter is already laughing: okay, they say, we can handle it, it's okay. She herself is sure that a certain risk is needed in order to be healthy and cheerful. “What advice to people who want to decide on something important, but put it off? Do not be afraid to be happy. "
Arina with the principal, head teacher and class teacher after graduating from grade 9 with honors
She would say the same to herself twelve years old: to remember that everything will be fine. What if it’s hard to hold a brush in your hand, you can draw on a computer. You can start a blog. You can just sit in silence and think – and then try again and win in your daily battle. And smile, be sure to smile – not through force, not tortured, but because she does it perfectly. And there, too, the history of art will learn over time.
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