War history: We returned because the needs of children are the priority

8 Липня 2022 by Olga Zhurbenko

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The National Assembly of People with Disabilities of Ukraine (hereinafter ‒ NAIU) within the framework of the project “Crisis in Ukraine: response and recovery taking into account disability” tells about the experience of representatives of public organizations of people with disabilities (hereinafter – GOI) ̶ members of NAIU, gained during the first days of a large-scale invasion of Russia on the territory of Ukraine.

For more than 10 years, the NGO ” Unfolded Wings” has been a source of support and resource for many families, which unites Lviv parents of children with disabilities. A serious challenge for them was the Covid-19 pandemic, which locked them at home and deprived of meetings, which became a serious challenge for them. Since then, the organization has gone online and continued to operate as best it could. The full-scale Russian invasion came as an even greater shock to the parents. Some of them left Ukraine, fleeing from Russian missiles and bombs. But the majority stayed in Lviv, and there are many different reasons for this. But despite everything, the members of the organization continue to support each other, continue to talk about the needs of their children, because they did not disappear with the war. We continue to tell the stories of these families because they are important and the world needs to hear them.

We returned because the needs of children are the priority

Natalia is a mother of two great kids, 13-year-old Sofia, and 11-year-old Lukian. The war reached the family at their home, in Lviv, and they had to relocate to Poland, to escape from the bombs. But they returned. Whatever favourbale the country might seem for children, with the higher level of medical care and social protection, especially in the wartime, they came back home. It turned out that for both children with SMA (spinal muscular atrophy) who are fully dependent on life support, medications, and care, it felt better to be at home.

Escaping the anxiety

Natalia lives with her kids in a block of flats, in a residential neighbourhood in Lviv. Their apartment is on the top floor, with large, floor-to-ceiling windows. It could be an advantage in peacetime but not under the missile strikes. That is why every day after the invasion the idea to relocate to another country was growing more real.

“We decided to leave because anxiety was growing every day. I realized that I would not be able to evacuate the kids, if required. I will not be able to manage on my own,” Natalia says. “There is a military object near our house. That is why the threat looked pretty real. And there was no understanding about any further developments.”

The truth is that Sofia and Lukian have the diagnosis that makes them fully dependent on life support and physical care. This is critical for their survival. They can’t move or breathe independently but they can understand everything. Natalia says that she was turned out of her home by the fear for their lives and by the thought that she failed to save them from the war.

They decided to go short distance, to the neighbouring Poland. Despite all hardships of evacuation under the given circumstances, they successfully reached the destination.

“Sofia is old enough to require the explanations about what was happening and why we had to go abroad. Lukian is younger, and I had to use more child-appropriate language. But in general, they endured the trip well,” Natalia recalls.

Suicidal thoughts

The family stayed in Poland for 80 days. It was an unforeseeable hardship.

“First of all, I was physically exhausted. Extremely exhausted. Sofia and Lukian require non-stop care, round the clock. Here, in Lviv, I can have the support of two grandmothers and caretakers. We relocated abroad with one grandma and a caretaker. We took turns to care for them but it did not help eventually. I was so tired that I was even haunted by suicidal thoughts…” Natalia shares.

At the same time, I was also considering the options to immigrate to some EU country for permanent residence. For example, Germany and Denmark guarantee round-the-clock care for children that require it, when parents can work. Natalia has a medical background but she is not able to work in Ukraine. And here’s the opportunity for her professional self-actualization.

“When I tried to imagine how this could turn out for my kids, I banished the idea. They are rather socialized, they communicate with us and with their caretakers. It is a very important part of life for Sofia and for Lukian. In case of language barrier, they can’t do it. Besides, I would not be able to choose who stays with my kids, which is also critical. In Ukraine, I have to pay for these services by myself but I can also choose the people. The needs of children are my priority. That is why the decision was obvious,” Natalia told.

Natalia only mentioned one important advantage of the temporary stay abroad – the children could see their father. He is a doctor who works in Germany. After the invasion, he could not visit the kids in Ukraine any longer but he could come to see them in Poland.

“Lukian is closely attached to his father and it is extremely important for him to see his dad. That is why he did not want to return home,” Natalia explains.

She says she decided to go back to Lviv after the Russian missile did strike the military object located near their house.

“The house survived, the windows are intact, and I decided to return,” Natalia recalls.

Homecoming

The family came to Poland on March, 3, but as soon as on May, 22, they returned to their home in Lviv. Sofia was very happy to return because there were her toys and friends. Lukian, however, felt sad missing his father but he adjusted soon, and now he is looking forward to his dad’s visit. Life resumed its natural course. It is not the same as before February, 24, but they are at their home, with their family and friends around.

“Do I feel safe? No, I don’t. I feel helpless because of my kids’ disability. I am worried because I would not even be able to take them downstairs, if anything. During the air raid alerts, we do not go down to bomb shelter because it’s cold and humid there. There are not enough sockets for all our equipment. I worry lest the electricity is cut off… Meanwhile, the war continues, and the missiles fly to Lviv. But we stay at home and we are aware of the need to flee again in case of active hostilities nearby,” Natalia summarizes.

This piece was produced as part of the project “Support to Families Raising Children with Disabilities in the Wartime” implemented in partnership with the “All-Ukrainian Public Association “National Assembly of People with Disabilities of Ukraine”” NGO, within the project “Crisis in Ukraine: Response and Recovery With Account for Disability” implemented by the “NAPD APA” NGO and the European Disability Forum (EDF).