When life in your body is not easy

But in this difficult story, everything is not as desperate as one might think. Families in Grodno are lucky: next to them, there are Red Cross professionals who "do everything they can". They put him in an old Ford always on the move, taken to a safe and comfortable place where children with special needs and their parents are always welcome. You can make tea, hug, talk about important or insignificant things, laugh, play, forget shame because your daughter does not speak and your son can withdraw, do his homework, confess his love, congratulate happy birthday to the other – in a word, do not be afraid to live. All this is the subject of today 's Grodno.

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– We started working almost ten years ago. Then it was a modest project. With the main Austrian funding, everything happened: repair, equipment, ten employees, – says the head of the Grodno Red Cross Day Center for Disabled Children, Inessa Larionova. – Each year we serve more than one hundred families. At one point, we had a specialist in rehabilitation, hippotherapy and mbadage. All parents receive absolutely free badistance. And we can come to families with children from 4 to 18 years old with disabilities and additional social vulnerability. By the way, we are the only ones in the whole country and in the structure of the Red Cross!

We have found our place in social inclusion. After all, parents live all their lives around a particular child. They sit between four walls. There is a big difference between the families who have just come to us and those who have been involved in the project for a long time: they are not afraid to live! They stop being shy and take public transportation in wheelchairs, communicate with people. Live a normal life. But when families come to arrive, they think that grief is with them exclusively, no one else … But look how different our children and our parents are – alive, beautiful, able to enjoy!

"A perfectly healthy baby is born. And then the disease takes you away slowly.

Maria Leshchinskaya, 39, and her son Misha, 16

– Misha is the biggest mystery of our medical family. I have parents and doctors, and myself, I am a doctor in a children's hospital in the neonatal intensive care unit, and my husband is an expert in forensic science. The pregnancy was excellent, there was no asphyxia, no resuscitation and, throughout the year, the child developed cerebral palsy. The first alarming bells were that Misha did not turn around and sit down. A neurologist at the clinic told us, "Oh, Mom, why are you so worried! Have a mbadage and everything will be fine. " Oh yes …

Now Misha walks alone, but her coordination is disturbed, he staggers. He speaks of being stuck in speech, he has spastic articulatory muscles. He can stand side by side – and suddenly, he staggers and falls backwards.

Misha communicates with her peers. But you know … How many questions did we hear, "Why are you?", "Why are you lame?", "Why are you in a wheelchair?", "Are you drunk? ". It's a pity for a little pupsik: "Poor thing, you have a candy!" But they are afraid of the big ones who have special traits. With regard to young children, there is a loan of kindness, responsiveness and trust. You can not tell a five-year-old child, "You're drunk!" But what about Misha, who was already two meters tall? ..

Before, when he was 3-4 years old, I could not talk about my son. I'll talk – and in my throat, sob.

Center means a lot to us. We entered the program when Misha was about 8 years old. It was difficult for me then. I know what it's like to be at home between four walls. What hell!

Misha, in addition to the Red Cross Center, almost never enters society. The teacher at home, communicating with teachers. And here in the center, he has crafts, therapies for dogs, ladies and love. Yes Yes (laughs) – Onliner approval. What did you think? Without love – nowhere (smiles – Approx Onliner)! For Mishka, the worst punishment is "I will not let him go to the center!" And the Red Cross machine that takes us here is the cornerstone.

Myself, I really could not take Misha in the street Vrublevskogo every day. The husband works, me too – now. And since there are three other children in our family, they also need attention. I draw actively, I became fascinated by psychology, I finally started to live, you know! .. and money for a taxi five times a week is not our option. Does every taxi driver understand Mishka's behavior with understanding? That's why this car is so necessary! That's why all of us, parents and children, are waiting in horror for the moment when he will finally be broken. You can ask me: why am I not going by bus? The answer is simple: Misha can not walk the stairs, falls on the asphalt. And people do not understand, do not always see his illness. After an incident with the fall, I decided that I would no longer go on public transport with Misha.

I have a lot of guilt in front of the eldest son, Roma. He will soon be 20 years old. After all, to be honest, too worries about him vis-à-vis his younger brother. More than a child. If you read this, Roma, know that my father and I love each other very much and regret that we are not ideal parents and that we have not seen in time that you sometimes have difficult moments.

Cerebral palsy is a problem for the whole family. Not only mine or Mishina. We, the parents, live something of our own country – adoption, for example, and Misha – his – overcoming obstacles and living in such a body.

Tamara Debelo, 47, and her son Danik, 13

– My son has a rare genetic disease – Duchenne muscular dystrophy. What does it mean? A perfectly healthy baby is born. And then the disease slowly takes him away from you … When Danik started to walk, it was as if he had heavy shoes that hindered his walk. It seemed so aside.

My eldest son had the same illness. He died at 20 (silent – Approx Onliner). We do not know what will happen with Danila. Until now, there is no treatment for Duchenne muscular dystrophy. Four years ago, an Austrian professor, a neuropediatrician, Red Cross appeared to us and Danika was watching – well, no medicine!

Danik says, "I would live until I'm 25 – and that's enough."

On Wednesdays, a minibus follows us and goes to the center here. Two years, my son and I did not go there: he was shy for himself.

It seems to me that now the attitude towards children with peculiarities is changing. The society is changing. The family and the surroundings get used to it.

It is not difficult for me with my son on public transport, especially if it is a new bus without stairs. "I even look at the city from the window," says Danila. It's like that he's sitting at home, plays computer games, strategies, he solves mathematics.

Every morning, I turn my son, mine myself, brush my teeth, feed me – and so on all day. The teachers come to the house. Sometimes a friend or neighbor will go. At night, I am also next to my son: Danika must be returned. It's nice that the center bought us a lift … I do not work, I live with a child care allowance for a handicapped child. How can I go to work? But what about Daniel? Nobody will take care of him like a mother.

Natalya Kotova, 45, and her daughter Masha, 11

– When Masha was born, there was an Rh conflict, a cerebral hemorrhage, a cyst … that's it, the coma! Three days in coma and eighteen in intensive care. Although the entire pregnancy went well, there were no signs of problems. Then we recovered for a long time all kinds of reeducation …

I work on the railway. I send and receive trains. Called "driver abroad". Very practical: the night worked, then immediately ran to Macha.

The husband is busy with the child. This is how we look at our girls. It's a big problem when you can leave your child to dad and leave.

Macha, as said dad, is the heart of the family. I remember that in a way, Masha was taken to the intensive care unit – and nobody wanted to go home. Masha keeps everyone.

My daughter does not walk and does not speak. But to understand when she is angry, you can immediately (laughs) – Onliner approval. Or if Sonya, a retriever, rides Masha with a fist during a dog therapy lesson, the girl will necessarily react with emotion.

Is it difficult for me on this groundhog day? No, I'm not alone, with my husband, with my eldest daughter, Alexandra, she is now 24 years old. We got used to it. And glad that everything is like that.

I think young people are nicer than the previous generation. In our yard, everyone knows and loves Macha.

In public transport, we never drive, because with an uncomfortable stroller.

Macha has completely changed us. The husband has become deeper, sentimental (he admits it himself), loving and responsible.

These children are very nice. They are angels.

"Yes, I am not a doctor at the hospital now, but I have not changed my vocation"

Here is such a small distribution of the daily life of three families. Another dark side of reality, usually hidden from prying eyes. Honest and touching, unlike many formal and dilapidated attempts to be close to people with disabilities.

– In our country, three departments are involved in helping families and children. These are the Ministry of Health (Rehabilitation Centers), the Ministry of Education (TsKROiRy, diagnose which children will work in the general school, who – in integration and who – at home) and social protection (babysitters, day centers for people over 18 years of age), – draws a general picture of Inessa Larionova. – It turns out that before the age of 18, children usually belong to local correctional education and development and rehabilitation centers, then go to nurseries.

We do not replace any of these institutions. We do not replace education because teachers come to their children at home, we do not replace the treatment because we only have elements of rehabilitation. Our main task is to take the family out of isolation. For this to happen, children must literally overcome obstacles – steps in the stairwell, on public transport …

I have long worked as an ophthalmologist. And then I joined the volunteers of the Red Cross. I had a personal tragedy: a cerebral hemorrhage at my husband's. He was paralyzed. I know what it is to bademble a brigade of four to raise an adult man to the fourth floor … And I realized that you must do what you can. Help someone you can help.

Yes, I am not a doctor at the hospital right now, but the desire to help people in difficult situation remains. I have not changed my vocation. Much has been invested in creating this center – both emotionally and physically. This relationship with parents is real. Here everything is alive.

At present, Tamara and Danika, Maria and Mishka, Natalia and Macha have only one wish: a new minibus allowing them to go downtown. Onliner appeals to its readers. This can be done in two ways.

The first is in a bank or by post: Regional Organization of the Belarusian Red Cross of Grodno, address: 230023, ul. Ozheshko, 1, Grodno, UNP 500135498. P / s BY75 BLBB 3015 0500 1354 9800 1001 to the direction of Belinvestbank OJSC in Grodno region, Grodno, ul. Mickiewicz, 3, bank code BLBBBBBY2X.

The second – with the help of SSIS: Charity → Help for children, adults → Belarusian Red Cross → BOKK Secretariat → Charitable contribution → Code 9058.

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