What the mother of triplets with ICP is fighting for and how she lives

Ekaterina Aronova of Novosibirsk, 46, is parenting three 15-year-old cerebral palsy kids who will never be able to live on their own.

Ekaterina not only raises and cares for children, but she also strives for their betterment on a daily basis. Today’s aim is to guarantee that boys may complete their secondary education in a school with an accessible atmosphere.

“How much are 800 grams? This is a loaf of sourdough bread. This was exactly how our Pasha was!”

Ekaterina’s eldest son’s name is Petya. He is the most challenging youngster in terms of physical and intellectual condition. The youngster can walk, stand, sit, and roll over, but he can’t do anything else. He is so tense in his muscles that he is unable to engage in any objective activity. He can’t write with a pen and eat with a spoon at the same time.

Petya would never be able to understand speech, according to the physicians. And even more so while speaking on one’s own. But they were mistaken. Petya is almost 16, and he enjoys communicating a lot. “Because he enjoys complimenting ladies, he always wins their hearts!” Catherine chuckles. Petya, she claims, has the sweetest heart: he is continuously concerned about everyone and takes care of them.

From the age of 11, the boy is curious about the meaning of his existence and considers how he may help others.

He enjoys music as well as new experiences. As a result, the mother must constantly plan a cultural schedule for her son, inviting people and taking him to concerts and the theater.

Andrei is the name of the middle son. In his childhood, he was the frailest: the boy had many respiratory arrests in the early months of his life. When the mother inquired why this was occurring, the physicians shrugged and said, “What do you want? Organs and systems are still in their infancy. In a chat with Ekaterina’s husband, the director of the neurological hospital’s department once declared, “Andrei is not your tenant.” And if he lives, he’ll seem like an idiot.”

But even here, the physicians were mistaken. Andrei grew up to be an energetic and purposeful adolescent who always knows what he wants and how to get it.

The middle kid, according to the mother, is “extremely contrasting” in comparison to the other brothers. Andrei has bright eyes, hair, and complexion, and they are dark. He despises everything his brothers like, from cuisine to attending concerts and plays. “He’s like a Baba Yaga in our family, constantly against it,” Ekaterina explains.If the elder Petya and the younger Pasha are clearly humanitarians, Andrei is drawn to mathematics and technology. He has his own YouTube channel where he publishes computer game walkthroughs. And he is well-versed in the technical specifications of nearly all current automobiles and cellphones.

Pasha is the triplets’ youngest brother. He weighed 800 grams when he was born. “What is 800 grams?” Ekaterina’s husband asked. This is a loaf of black bread about the size of your palm. This was exactly how our Pasha was! After giving birth, Pasha appeared to Ekaterina to be very charming, humorous, and unlike a person: “His ears were folded like dumplings into a bundle.” However, the tiniest youngster “shot” in development the quickest.

At the age of two, he was already able to speak in very complicated structures, memorize entire episodes of cartoons, and read.

He became interested in the absorption of knowledge in any form – books, videos, articles – over time. And when he finally gained access to the Internet, his search queries astounded my mother. The youngster read about Putin’s inauguration, watched Portuguese lessons, worshiped in an Armenian church, and listened to an English interview with Elizabeth II.

Pasha has a diverse set of hobbies. But right now, all of his attention is on one thing: learning English. The youngster aspires to be a teacher after understanding it completely.

“They were sent home without any serious diagnosis.”

Ekaterina Aronova:

My pregnancy was both wanted and planned. I was on vacation when I had the foreboding feeling that something was going to happen. When I got home, I conducted an ultrasound, which verified my fears. My gynecologist predicted that I would have twins. And for the first part of my pregnancy, I had the great sense that I would have twins.

During my pregnancy, I was very disciplined, followed all of the doctor’s orders, and attempted to live a regular life. I got a specific blood screening at 20 weeks. And he displayed some odd numbers.

The physicians were concerned. One doctor thought that it was time to start looking for a third kid.

Another doctor observed Pashka on the ultrasound, who was laying quite high in the hypochondrium. Then I found out I was going to be a mother to many children. But if the notion of twins made me literally purr with delight, the number 3 made me nervous. I attempted to examine the issue objectively. We didn’t have grandparents to assist us. And I only had two limbs and two breasts, not three. So I knew it would be difficult even back then. And I cried for the first two days, unsure how I would survive.

However, the spouse responded with humor. When I told him over the phone that we were expecting three children, he said, “I hope their number does not grow with each of your ultrasounds.” This mindset was really beneficial to me.

When I was about six months old, my ideal pregnancy deteriorated sharply, and the tests became bad. Doctors discovered myocarditis – inflammation of the heart muscle, I even lay in intensive care. I remember that at some point my stomach became so big that it was hard to breathe. Therefore, at the next ultrasound, the doctors said that there was no more time – we urgently needed to do a cesarean section. The question of natural childbirth was not even raised.

The triplets were born 10 weeks prematurely. They were very light: three hundred kilos, two hundred kilos, and 800 grams. Therefore, we were left in the maternity hospital until the children gain normal weight. They could not eat on their own, so every three hours I expressed milk, poured it into a 20-ml syringe, and dosed it into a tube installed in the throat.

The children were in intensive care in different wards, I went around them in a circle. I’ll inject a milliliter, I’ll say a kind word – and to another

Then it was time to eat, express milk. And then it was necessary to go back to the boys. I got up at five in the morning on an alarm clock and finished feeding at one in the morning. It was a very tough schedule. When they were transferred to my room, it became a little easier. But there was another problem: they did not sleep at night. And if one shouted, then others woke up.

Two months after the birth, we were discharged home without any terrible diagnoses. Now, when I remember all this, I think: it’s good that in life everything was given to me gradually. I didn’t know about the triplets right away. I didn’t get the diagnosis right away. Life gave me everything in doses, so I had time to accept everything and understand how to move on.

“Why did this happen to me?”

The condition of the children changed dramatically at the age of 7–8 months after a viral infection. It was as if someone at that moment pressed the “start” button, and spasticity began to increase – muscle tension, one of the obvious manifestations of cerebral palsy. My husband and I began to notice that the boys did not sit down on their own, and could not hold objects. And that this is not because they are early childhood, but because somehow they simply do not succeed. Of course, we had seen doctors before and had massages. But here they began to purposefully look for experienced neurologists. At 10 months, the diagnosis of cerebral palsy was confirmed.

I was shocked because I had never experienced this before. I didn’t have any acquaintances where children with cerebral palsy would grow up. I have never interacted with such people.

The thought “Why did this happen to me?” was constantly spinning in my head, and I just could not think of anything else.

But my husband and I, due to our inexperience, were sure that we could win everything: we would do several massage courses, and drink pills. And then everything will pass for sure. Scrolling back, I think: “Thank God, I didn’t know then that cerebral palsy is forever.”

Because it was this ignorance that helped me save at least some strength, but my whole life was on pause and made it clear that now we will spend all our time, opportunities, and money savings only on our children. My husband and I knew that we would move mountains so that the boys could live in better conditions/

I will not hide the fact that there were regular moments when it was very difficult for me. But it lasted no more than five minutes a day. Until the age of four, children fell asleep only in our arms and woke up every night. By the way, Petya still does it.

Chronic fatigue literally permeated my body. But as soon as I fell on the bed and thought: “That’s it, I can’t do this anymore,” that very connection between mother and child helped. Our children were small, cool, funny, and smiling. How could I sit and be sad when they need me?

My husband was my faithful partner in this fight with the diagnosis. He also put his life on pause and abandoned his interests. Apart from us and working to provide for his family, he had nothing.

Why was I born like this?

The most difficult thing is that all the skills that children acquired naturally (“Oh, look, he turned!” or “Already crawling by himself!”) Our children were not given so easily. The boys had to work daily to achieve something. It was equally exhausting for them as it was for us.

Most of all, I was worried that one day they would ask: “Why are we not like those children?” But there were no such questions. I think it’s because they grew up together. And revolved in a society of their own kind.

Probably, they simply don’t have the idea in their heads that someone can divide people according to some criteria.

But they had other questions. No less complex. For example, Petya often asked about the meaning of life. He was not interested in why he was born that way, he wanted to know why he was born that way.

I developed a certain system of answers for myself. For example, I always answer this question: “Peter, arms, and legs are not the most important thing in a person. What do you think is the most important?” Since many people tell him that he is warm-hearted and kind, he replies: “Kindness and soul.” Then I say: “Of course! This is the main and defining quality in a person. And yours is beautiful. You can influence people by making everyone kinder.” That is, I take the conversation to an area where it can be useful. This inspires him greatly.

But Pasha loves to fantasize, and on a historical scale: “How would I live if I was born in the eighteenth century?” And for some reason, he never dreams of being healthy. It just simulates different situations in other eras.“Do you remember, my dad and I…”In 2015, her husband passed away. He had a stomach ulcer and viral cirrhosis of the liver. We needed a transfer, but we didn’t make it.

The boys released their father slowly, he gradually moved away. First, he went to the hospital – they stopped seeing him at home. Then they only talked on the phone. Then he could not speak, I gave them information about him through myself.

It seems to me that the boys are lucky that they had such a dad. He showed them how important it is to be human, to have an education, and to help others. The boys have many vivid memories of their father. They often say: “Do you remember, dad and I…” This is especially valuable for me.

There are no schools for such children in our city.

Until the fourth grade, our boys studied at the Siberian Ray school. I remember it fondly because it was a beautifully equipped and accessible environment. The teachers were teachers who had extensive experience working with children with different developmental characteristics.

And then it turned out that in the huge city of Novosibirsk, the third-largest city in our country, there were no options for continuing full-time education for children in wheelchairs.

Other parents and I started walking and talking with the mayor, the governor of the Novosibirsk region, and deputies because we did not know where our children would go to study next.

We were offered the only possible option – and it turned out to be an old four-story school, where there were no elevators. There was no point in buying an expensive lift because it only took 10 minutes to raise and lower one child, and there was a whole class of children. And only after two years of training, did we manage to make an elevator. Also, the school had to change the training specifically for us. Now the children did not go to the classrooms but sat in one, teachers came to them.

Now the boys are finishing the ninth grade. The question of what they will do next is still unresolved. If our school does not have enough students for the 10th grade, it simply will not exist. Until that happens. On this issue, I will communicate with the Minister of Education of the Novosibirsk Region. Hope we get something.

Help from the state

On the one hand, we receive quite a lot of help from the state. You can start with the fact that children who have an official disability receive a pension. And if the parent caring for the child is not officially employed, he receives a care allowance. This is definitely a good help.

My expenses are supported by additional support measures from the government of the Novosibirsk region. This is what my husband has achieved. There, a resolution was adopted that the state partially covers the payment of assistants in families where there are three or more disabled children. In fact, it was created specifically for our family. But, of course, it is also available for other families in a similar situation.

Three years ago, the governor of the Novosibirsk region gave us a car with an electric wheelchair lift. Now my sons are taken to all educational, training, rehabilitation and cultural and entertainment events by a state minibus.

On the other hand, this money is not enough for the expenses that are necessary for the rehabilitation of such children. And the equipment that is provided free of charge to children with cerebral palsy, for example, does not suit my Petya.

He can’t just sit in a wheelchair, he needs to mount all parts of his body. This technique is very expensive.

The problem was that we almost stopped getting out for rehabilitation in special centers. Despite the fact that the documents say that everyone is prescribed preferential rehabilitation, the FSS cannot provide them to everyone once a year. Simply because the number of vouchers does not match the number of beneficiaries.

Therefore, it is difficult to unequivocally answer whether we have enough help. Of course, she is. But sometimes it is not fully implemented, thought out.

Live, love, and never give up Life can bring me different surprises. Therefore, I would like to wish myself to be in a resourceful state more often when there is strength, energy, and inspiration.

We have experience when we flew abroad with the boys three times: once – for rehabilitation, and the other two – at the invitation of completely (at that time) strangers. What seemed impossible suddenly happened. In order for the boys to lead an active and eventful life, our family has two assistants. They are the arms and legs of boys.

I am grateful that they are with us from the hospital and still. They worked with my husband, remained close at the most difficult moments of life, and were not afraid of difficulties, and changes in the amount of work and pay. Helpers play an important role in my boys’ lives. They have very warm and sincere feelings for each other.

I have met many people who are ready to help and offer us the most unusual solutions. It turned out that flying to distant lands is not so scary.

I would like the boys to live in the atmosphere I created and not feel their limitations so that people would be open to them and that everything would be solved easily and correctly. And for this, you just need an internal resource, because everything that is happening to them now happens through me. I need strength for this, let them be! But the main thing is to live, love, and not give up.

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