"We are a challenge to public opinion"

History of Ekaterina Aronova, raising three sons with cerebral palsy

Ekaterina Aronova from Novosibirsk raises triplets of Peter, Andrei and Paul, who have children's cerebral paralysis. In 2015, her husband died, and since then, care for children is completely on her. Now she is 46 years old, and the children are almost 16, and she understands that her sons, most likely, will never be able to live on their own. About how she lives with this knowledge, where she finds strength and what she wants to teach others, Catherine told the “cold” for the heading “from her words”.

I gave birth to boys at 30. The husband first worked in the leadership of one company, then opened his own in the same field - ventilation and air conditioning, he had a large state and ambition. But for several years he had food allergies, which in the last months of his life led to Quincke's edema . Plus, several diseases of the internal organs were found almost simultaneously. Initially hospitalized with acute pancreatitis. For four months he was released home from the hospital for several days, the children talked with him, although it was already clear that he was very ill, he was hospitalized again. He found other diseases in the hospital: a stomach ulcer and viral cirrhosis. It turned out that he has such a neglected case when almost nothing is impossible to do, except for the liver transplant. But they did not have time. He died in 2015.

I do not know how I experienced my husband’s death - everything is like in a fog. The sons weaned gradually from the pope. At first he was in the hospital, but they knew that he would write out and arrive after some time. Then he no longer came home, but every evening they talked on the phone. When his voice disappeared and he could not speak, I went to the hospital every day and brought the children hello from him. The man seemed more and more moved away. It was not so suddenly when, once, an accident, now was, but after a minute there was no. But this, of course, did not cancel all the horror of loss. I probably pulled me thoughts about children: I should be for dad and for my mother, their life should not change.

Since we had no grandparents nearby, during the life of my husband, we began to attract the help of nannies, because it was immediately clear that when my husband was at work all day, I could not cope with three of our babies. Nannies are the arms and legs of my children. If not for them, then we would not be able to lead a way of life, as close as possible to the lifestyle of ordinary families.

My children every day visit a correctional school for children with violations of the musculoskeletal system. To have time to raise and bring the children, I get up at 6:20, I begin to prepare breakfast with one hand, wake up the children with the other, then the nanny comes to my aid, then I move to the kitchen, and she collects the boys and they have breakfast. Then our second assistant comes, a man, with such a company of six people, we go down where the driver with the car awaits us, this is about 7:40. Then they go to school with assistants, I'm not going to school. In the first grade, all adults were next to the children, because help was needed in everything, it was elementary to get a textbook, turn the page. But we more and more accustomed the sons to independence, gradually my presence was no longer needed, there were two nannies with them.

The boys are painted by all weekdays. After school, Pasha and Andrei go to training twice a week to study all muscle groups. Petya has the most difficult condition, training is not shown to him. The rest of the time, boys are doing lessons, attend additional classes of a distance school for children with disabilities of the Novosibirsk region-each son has two lessons per week. From the eighth grade, they are engaged in algebra, physics and chemistry twice a week twice a week - now, of course, remotely. Pasha is still engaged in his own initiative with a tutor in English, also twice a week. When all training and classes are completed, boys are engaged in home simulators. Such are their labor adults.

Before the pandemic on weekends, we have always had an extensive cultural program, we are regulars of philharmonic concerts, performances, cinema, circus, guests come to us. I try to create the most interesting and affordable life, just this requires great efforts. Now the sons are able to behave, but before we come somewhere-one laughs, the other cries, the third shouts something, adults are heaverly soothing them.

I have triplets, but they are not similar to each other either outwardly, or in character, or in their skills, and at a fairly early age, interests were determined. For example, the middle, Andryusha, is very different from the brothers in appearance, it is more fair -haired, light -eyed, and Pasha and Petya are dark -eyed and dark -haired. Pashka is one hundred percent humanitarium with excellent memory, at three years he could quote paragraphs from fairy tales at once. He reads a lot and watches everything related to history, began to be interested in politics and English. Sometimes it suggests what I would like to teach in the future.

Gadgets and computer games are interested in Andrei, in 2019 he began to lead his channel “Blogger on Wheels” - it was completely his initiative. He shoots game and conversational videos. Not everyone understands his speech, he frantically pronounces hissing. Now he has four thousand subscribers, this is a great achievement. He writes all his evenings for his channel, or looks at other bloggers. He almost ultimately declares that after the ninth grade he will not study, he will be engaged in a blog. In fact, what he will do after the ninth grade is still an unresolved question. It is not even clear whether we will have a tenth grade at school, since they can not gain children - classes are already very small, now they have six people. All over the year they miss a lot, because they go for treatment or rehabilitation, but the school treat this with understanding. The boys have no friends who are not related to study, although Andryushka has several guys with whom he corresponds.

Pasha and Andrey study according to the general education program. They don’t write with a pen, but they are typing on a laptop. Confidently read, quickly remember, study well. There is some progress in their physical capabilities, and we try to abandon strollers. Pasha walks around the house with a special cane called “crab”, because she has four legs at the end. He walks from the car to school and back with the help of walkers, he feels confident in them, and, accompanied by adults, walks himself. Andrei has a different design of the walkers, he can rearrange his legs, but necessarily under the supervision of adults. They practically make lessons on their own, print on laptops, eat themselves, Pashka himself dresses, is growing up, Andryushka partially-he does not succeed with socks and trousers.

Petit has the most difficult state in intellectual and physical terms. He can’t practically nothing: he himself does not, he doesn’t walk, does not sit - only in special strollers, he practically does not crawl - only very slowly, he does not even turn on his back, lying on his stomach. He cannot feed himself: for example, he will take a spoon, but will not bring to his mouth. At school, he studies according to a very lightweight program. At the same time, he is very sincere, caring, attentive, he has well -developed hearing, he remembers music perfectly, distinguishes in steps who is coming. He loves to communicate, meet him, he is interested in knowing everything about everyone.

"I decided that I myself am a charity fund"

For the first ten years, everything was tied to my children, I don’t remember at all what I did, except for them. When my husband died, I needed to take on organizational issues. Then I did not know at all which documents where to wear, where what was - my husband was engaged in all this. Now I myself am engaged in all business related to the life of children, for example, the other day I spent more than three hours to go to the social insurance fund and get into an electronic queue for preferential trips to the sanatorium for the next year. The fund contained the originals of certificates from the clinic that had to be attached, and I can’t independently understand the public services website how to make three different statements. On other days, I go to the clinic, social protection. I reached the Governor of the Novosibirsk Region to provide my family with specialized transport, and now for the third year, as the state provides us with a minibus with a lift and a driver for all the trips of sons according to a previously agreed schedule.

Before the birth of the children, everything was fine in our financially, but as the boys were born, it got worse with money. The husband took loans to keep his own company afloat, sometimes there was nothing to pay nannies, and then the husband first turned to charitable funds. But somehow it is strange to help a full family with a dad. However, when he died, in the first year and a half we went to Moscow, Peter, Evpatoria and Krasnoyarsk to various specialists, everyone paid charity funds. It was incredible help. I did not contact again, because there are those who still need it. I manage my own efforts. I decided that I myself am a charity fund.

We have two main sources of money. The first is the help of the state: a pension for disability, children have a child with a disabled child up to 18 years old, 16 thousand rubles each, plus small regional surcharges, my benefit for children with disabilities, this is 12 thousand. I treat the manual as my salary, with this money I can afford to periodically go to massage and yoga to improve health. In total, it turns out 90 thousand per month. More than half we eat and spend on household expenses. And this certainly cannot cover our expenses for a coach, tutor, and so on. We have four assistants work two people per shift. They have total costs about 135 thousand per month. Partially, these expenses are covered by the state: the husband also got payments from the government of the region. As far as I remember, it was a compensation for the costs of nannies for families in which three or more children with disabilities. The second source is charitable revenues: the support of the former colleagues of her husband from the company where he worked for many years, this amount is just completely covering our expenses for assistants. Sometimes we have one-time receipts from the indifferent people who have read about us or saw somewhere and suddenly wanted to help. Therefore, I am serious about my activities in social networks and YouTube . This is a kind of window into the world that allows us to be noticeable and attracts people. Due to the fact that someone learned about us, we went to India for rehabilitation, to Tenerife and Cyprus is just to visit.

Rehabilitation expenses are different every year. For example, two years ago we had a free operation in the mound so that Pasha could walk, and Petya to correct the curvature of the legs. He had a wrong pose, even when he was sitting in a stroller, one side was braked, his legs dug into the metal elements of the stroller. After the operation, the state could offer us rehabilitation only six months later, when our electronic queue is suitable. You can’t jump over it, and this rehabilitation is just a 15-minute massage in the clinic. It was clear that we needed paid rehabilitation, and this is very expensive. We made two three -week courses for all three, because it is also useful to Andrei, and we did not deprive him. Rehabilitation included massage, physiotherapy exercises, acupuncture and special Chinese massage. More than half a million came out for the money, I announced a fee on social networks. I directly talked about our lives, showed gloomy boys that we are already starting to train, what loads doctors allowed us and so on. And I collected this money. Someone transferred one hundred rubles, someone five thousand, someone a large amount. Over the years, I have encountered so many support, with so many kind, disinterested, incredibly generous people that I understand that, probably, Russia in this sense is unique. It seems to me that our people are one big heart.

Each post on Facebook for me was the mobilization of all forces and resources. Of course, this did not cancel the endless sobs, all this was, I just did not want to delve into it now, because it was very difficult to get out of it. The boys, of course, saved. They are cool, funny, funny, so combat. Even Petya, despite his immobility, so alive, he is interested in everything, everything needs. You do not get bored with them in a good way. They have lively, cheerful, I am directly proud of them and adore. It is impossible not to try for such children.

If I have power, then the power of spirit, and not physical: I can’t raise a single son already, I can’t transfer Petya from bed to a stroller, it immediately shoots in my lower back, it becomes difficult to move. I try to follow my physical and mental health, because I know how the state of children depends on my state, so I cannot afford to grieve and be upset, at least with children. It is not forbidden to cry or grieve in us, but I try to create a positive, supporting atmosphere and mood around them. Yes, life is very complicated, but I want something bright so that they know that there is a family, support and support, and everything will be fine.

Of course, there were different cases that knocked me out of the rut. I can be upset because of anything, the other day I was upset by the Social Insurance Fund: I was demanded from the documents that I already had, but for some reason new ones demanded. There is such a feeling of powerlessness when you interact with the officials, I was terribly offended, to tears. Sometimes I get upset because of the boys, for example, Pasha is very worried about failure. He has more intellectual and physical abilities than the brothers, but any training with tears, hysterically cries, does not want to do. If he is not immediately given a new simulator or exercise, he is upset to a scream. I can be upset because of Petit that he grows up and is aware of his limitation, it grieves him, so I spend more time with him, console and encourage him. Petya listens to music, watches my videos on the Aronov Life channel , which I started this spring.

I graduated from the Novosibirsk Conservatory, I am a candidate of art history, I also received a second education at the Institute of Advertising and PR - I am a specialist in public relations. At the junction of these specialties, I led the Philharmonic press service for several years, it seemed to me that this is my calling, I did a great thing. Now, organizing the lives of children, leading social networks, shooting videos for YouTube, I suddenly realized that many of my skills, for example, are beautiful, folded, to structure, analyze information, are very useful. Take the same YouTube channel-everything seems to look very simple, but it has carried me away for many months. The process itself: inventing, shooting, installation, studying programs that I have never used is a separate science, how to arrange everything correctly, arrange all these tags, hashtags and so on. This is a good creative implementation that I lacked.

"I'm scared to think about what will happen to my children after me"

Children have a childhood, and their whole life is tied in classes, procedures, rehabilitation, and so on. What did they see in this life? What will they remember about their childhood? I used to be very demanding on lessons, estimates and results, I did not allow children to spend time in idleness: “How is it that you are sitting, let's do something else! And what are we here on the sofa settled? Let's do it again. ” But gradually, even the number of hours of rehabilitation was reduced, because I realized that the number does not go into quality, and is it worth it to wrap myself and them, only so that I could say that I did everything that I could? Who needs it as a result? I began to encourage Pasha and Andryusha when they excitingly spend their free time and do what they want because it makes them happy. When the children were small, it was a stress for me to get out somewhere, I was always worried that they would do something. And then suddenly I myself began to enjoy our outputs, that is, it became for us a truly joint pastime, when it was interesting for both children and adults. And it seems to me that our life has become ordinary: well, yes, we have training, but other children go to play sports, we have a tutor, and other children have tutors.

When the children were younger, I hoped that they could do everything on their own, but, looking at what we went through and in what condition the boys are now, I understand that their complete independence is impossible, despite all efforts. Now I look at them soberly and understand that in our case a miracle will not happen. What will happen to the children when I don’t get it is an unresolved issue, and I don’t know how to solve it. The worst thing is when people with their diagnosis fall into a neuropsychiatric dispensary. This is a dead end, people do not live there for a long time, no one is engaged in them, they just lie and die.

Я прекрасно отдаю себе отчет в том, что взрослые инвалиды — самая незащищенная часть населения, на которую, как мне кажется, никто не обращает внимания. Этот вопрос не дает мне спокойно жить, он всегда присутствует, как пунктиром, пульсирует в сердце. У меня очень истощились силы за 15 лет, я очень устаю. Я родила своих мальчишек в 30 лет, то есть будучи не самой молодой мамой, а с такими физическими и моральными нагрузками вряд ли проживу очень долгую жизнь, поэтому мне страшно думать о том, что будет с моими детьми после меня. Точно так же мне страшно думать о том, что с нами будет, когда у нас не будет материальной поддержки.

Доступная среда в Новосибирске — сложный вопрос. Пока детям не исполнилось 13 лет, мы жили в пятиэтажке на третьем этаже без лифта. И никаких вариантов сделать доступную среду не было. Маленький домик, узенькие лестничные пролеты, пандус занимал бы всю лестницу. Мы даже не смогли договориться, чтобы сделать во дворе малюсенький гаражик для наших колясок, чтобы не таскать их на третий этаж или не спускать в подвал. После смерти мужа его друзья помогли нам переехать в другой дом, где есть лифт. Сразу был сделан ремонт, широкие дверные проемы, широкие коридоры, поручни около раковин и унитазов.

Городские условия, безусловно, в последнее время стали улучшаться. Новые дома и здания строятся по другим правилам, невозможно уже без доступной среды построить, и старые здания начали адаптировать, поэтому у нас и была возможность ходить в театр и филармонию. Когда ребятишки были еще маленькие, я первая ехала в новое место и проверяла его на доступность. У нас была маршрутная карта мест, про которые мы точно знали, что это место нам подойдет.

Положение с доступностью медицинских учреждений, конечно, печальное. Например, есть пандус, но такой крутизны, что взрослому человеку-колясочнику подниматься просто опасно. А что такое доступная среда? Это когда человек на коляске может проехать один без помощи. Высокие порожки, которые обычный человек в принципе не замечает, для колясочника — преграда. Также двери, которые невозможно открыть: вот ты поднимаешься по пандусу и упираешься в дверь, а дверь открывается на себя. Попробуйте ее открыть, сидя в коляске. Нам, с одной стороны, легче, потому что, если мы куда-то едем, нас трое детей и трое взрослых. Мы всегда можем так самоорганизоваться, что один держит дверь, а другой по очереди закатывает коляски или придерживает вторую дверь. Система из нескольких дверей — вообще квест, который невозможно преодолеть. Но мы настолько привыкшие, что уже практически не замечаем. Очень часто подход к доступности просто формальный, чтобы отчитаться: деньги на программу доступной среды выделили, вот мы ее сделали. А как сделали — большой вопрос.

Мы, наверное, так давно ездим по городу, что очень многие нас видели или знают. Люди реагируют по-разному. Раньше мне казалось, что все глазеют, и меня это больно ранило. Мне в этом глазении чудилось что-то не очень доброе. А потом несколько людей подошли по-доброму, и я поняла, что в этом нет ничего негативного. Просто люди никогда не видели, что так бывает. Я стала проще относиться к визуальному вниманию, наоборот, иду такая веселая, с детьми чирикаю, мне кажется, в этом есть какой-то воспитательный момент. У многих бывают устаревшие представления, что, если человек на коляске, он еще обязательно какой-нибудь дурачок или вообще не разговаривает — многие подходят и спрашивают меня про детей, то есть они видят, что дети уже взрослые, но спрашивают у меня. Никто даже не догадается спросить у детей напрямую. Как будто это какие-то недочеловеки, в коляске сидят, не понимают. Мы — это в какой-то мере вызов непродвинутому общественному мнению.

Раньше очень многие люди с инвалидностью были вынуждены сидеть по домам и учреждениям. Я никогда до 30 лет не сталкивалась с людьми с ДЦП, как будто их не существовало. И для кого-то это тоже первый опыт. Стоит перекинуться несколькими фразами с Пашей, он на вас вывалит уйму информации, и вы его полюбите навеки. А Петя что-нибудь скажет комплиментарное, какая вы хорошенькая, какая вы красивая, нежно посмотрит — и все, вы пропали. Они очень классные, поэтому люди хорошо к ним относятся.

При всей уникальности ситуации, когда трое детей с ДЦП, да еще и муж умер, ко мне пришло какое-то смирение и принятие. Мне хочется думать, что все, что я сейчас делаю для мальчишек, я делаю и для общества в целом, потому что оно должно видеть и знать, что это такие же люди, что у них есть душа, что у них такие же потребности, им так же хочется и развлекаться, и вкусно есть в кафе, и так далее. Тем, что мы не прячемся, куда-то выходим, ведем себя весело, иногда и шумно, мы просто показываем, что вот есть и такая жизнь, и ни чего-то страшного, ни чего-то слишком особенного в ней нет.