«It’s nothing fatal, so we will cope»

«I started thinking about adoption after the birth of my first blood child,» Yevheniia recalls. «But after the birth of Slava and Seva, I started studying blogs, books, and movies on the topic. I also read to my husband, and he said: ‘I’ve already realized where this is going’. Then I found a profile of two sisters, Angelina and Nicole, on one of the websites with an orphan database. By the way, we later found Veronica there as well. But then, when I came to Maksym with the questionnaire, he said: ‘Well, let’s start, and we’ll see how it goes’.» 

When the Sentsovs went to pick up the girls five years ago, they did not know their diagnoses, they only had information about Angelina’s disability. The girl has microcephaly. This is a medical condition in which the brain has a smaller size and weight than usual. This diagnosis often accompanies FASP. But when they came to the Children’s Service, both parents and specialists were surprised.

«We were told what documents we needed to collect. Seeing our determination, the specialists decided to warn us: ‘Do you know what the health situation is?’ And they started telling us that there was FASP, microcephaly and other diagnoses. I had read the literature before and knew roughly what they were talking about. So when I heard that there was nothing fatal, I said: we can handle it. We gathered the documents and returned in 2-3 weeks. The service was frankly surprised at our appearance, because they thought they had scared us off with those diagnoses. Then they tried to scare us in the orphanage. It was surprising because we thought the system was aimed at placing children in families.»

How to overcome the fear of the unknown

It took the family four months to collect the documents for adoption. At home, three-year-old Seva, who had never met the new family members before, and 9-year-old Sviatoslav were waiting for the girls. The parents throughly prepared him for the arrival of the sisters.

«Angelina was a little crazy. She looked at how many toys we had and went to play. And Nicole sat in the corner, playing alone. Slavko treated the girls very gently, playing with Angelina from the first minutes. He still carries all the little girls in his arms, carries them on his shoulders. The boys are more reserved among themselves.»  

From the very first days, the Sentsovs started looking for doctors for the girls.

«It turned out that the pediatrician knew nothing about the syndrome because she had never encountered such children. The pediatrician sent them to a geneticist and said that the diagnosis had already been made and asked: ‘What else do you want from me?’ So they didn’t know where to start. But gradually they found doctors who had dealt with children with FASP… And they all reassured us that everything would be fine, we would cope with everything. It was great support.»

The family did need support, because it was unclear to them whether the children’s behavior was due to the fact that they did not know how to live in a family or to the disease.

«Angelina would sit and not respond to simple questions. The hardest part was not understanding whether she was doing it consciously or whether it was microcephaly. Will it be permanent or can it be overcome? But over time, you get to know the child, the disease, and learn to distinguish between the conditions.»

As for Nicole, the family was warned more than once that the girl would never be completely healthy. She was recovering from a heart operation and was severely retarded.

«The orphanage didn’t even know if she would return to them from the hospital — if she would survive. But already during the meetings in the orphanage, Niki started walking and even uttered her first words. None of the predictions came true. Now she has a delay in physical and psychological development, and we still don’t know if she will be able to go to a regular school. But there are areas in which my daughter is progressing very well. We sent her to singing lessons — she sings and has a good ear. We also sent her to English classes, and she picks up literally whole phrases. Her speech now consists of three languages: Ukrainian, Russian and English. And this is just in two months!»

The whirlwind girl

A few years after the two sisters joined the family, Yevheniia saw Veronica’s video profile in the same orphanage. The girl also had FASP and looked very much like Nicole, so Yevheniia’s heart felt squeezed. At first, the couple did not plan to adopt, but the decision came naturally. Two weeks later Veronica was taken into care, and six months later she was adopted. Recently, Yevheniia wrote about Veronica in her blog:

«Three years at home.

In American adoption blogs, there is a phrase ‘bring the child home’. It’s as if the child is not acquiring a new home, but filling his or her place.

This phrase is about Veronica. She simply became the missing puzzle piece. She returned home after wandering around hospitals and an orphanage for two years. Of course, I know why she was not adopted earlier. I was confused myself when I saw the list of diagnoses that two-year-old Veronica allegedly had. But letters on paper are not a child, a child is always more than mere diagnoses.

A dynamo girl, a whirlwind girl, a rock of a girl. She was small and traumatized, and with her we learned about jactation, masturbation, and autoaggression. But she is the strongest of our children, so she quickly dived out of self-destruction and into self-love. She knows exactly why and what she wants, and she achieves her goals.»

A surprising appearance of Lev 

It would seem that was it. But then the boys «rebelled»: why are there three girls in the family and only two of them? The parents looked through the database, but they couldn’t find “their” child. They put the question aside. But suddenly it came up again…

«In early February 2022, an employee of the Children’s Service came to check on us and, as if by accident, offered us to take a boy under our care, whose parents also [had an alcohol problem]. But we had no documents at the time, and he had no status. That is, Lev’s parents were deprived of their rights, but the decision was to take effect only in March, although at that time the boy had been in a Chernihiv rehabilitation center for six months. We started collecting documents, managed to get to know the child, but war broke out.» 

Russians were shelling Chernihiv, so the family decided to leave. Her husband had already taken Yevheniia and the children out. But they couldn’t take Lev — they had no legal grounds. Maksym returned to the city to pick up his parents and contacted the Children’s Service. A few days before, a Russian missile hit the rehabilitation center. Fortunately, the children were hiding in the church and were not injured. The boy did not even have a birth certificate, only a copy. Nevertheless, the Children’s Service staff prepared documents for temporary custody of Lev for Maksym within a day, and he took the boy home.

«But we could not leave Chernihiv for several more days because of the heavy shelling. In the end, my husband took the child with him to Drohobych, where we temporarily moved. By the way, now I can say that even though Lev’s mother drank, his health problems are minimal. Lev has been living with us for almost a year and a half, but only recently his parents were deprived of parental rights. So right now we are collecting documents to adopt him as well.»

Before they had time to overcome the anxiety of being in the orphanage, an unexpected move was added, and with it, stress. Nicole kept asking where they were going. The parents explained that they were paying someone a visit. They did not mention the war. Still, the girls felt uneasy at their new place for a month.

«We went to Drohobych, where we have a friend, without any plan: where we would live, how everything would be. At first, nothing worked in western Ukraine, we couldn’t get to specialists, couldn’t get the medicines we needed right away. In a few weeks, a number of issues were resolved, and the children were sent to classes because they need physical activity to keep their muscles working, to overcome scoliosis, and so on.» 

Nicole’s epileptic seizures, which were extremely rare before the full-scale war, returned. Her anxiety decreased only when the family returned home.

Be ready to remain adults until the end

Finally, we asked Yevheniia Sentsova to give some advice to parents who want to adopt children but are afraid of complex diagnoses, such as FASP.

«For all adoptive parents, regardless of what kind of children they want to adopt, I would advise them to prepare a ‘safety cushion’. That is, to evaluate who you can count on to sit with this child, or who you will leave other children with in case of force majeure, if you need to go to the hospital, for example. You need to talk about it with relatives and friends, or find a nanny. 

You also need to be prepared to study a lot. You need to delve into the diagnoses, learn to observe the child and understand how he or she thinks. This is much better than professors’ descriptions of how their brains work. 

You need to be ready to remain adults to the end, no matter how your children behave. Because adults are the ones who do not absolve themselves of responsibility and do not shift it to children or circumstances. 

The last and most important thing is to expect less from the child, to compare him or her not with peers, but with oneself. Enjoy the little things.»

The piece was prepared within the framework of the UNICEF project in Ukraine «Caring Families for 1000 Children», implemented by the Ukrainian Child Rights Network.