We had our difficulties before the war. Thousands of parents of children with severe disabilities are constantly fighting for their children’s lives. Sitting in a bomb shelter, hearing explosions – it was less stressful for us than for people who lived a normal life. But at the same time, it is scary because our children are dependent on medicine, electricity; in wartime this is the first thing we can be deprived of. 

Sofia and I were hospitalized on February 19th with pneumonia. My child has a severe disability, birth trauma – cerebral palsy and epilepsy. She is 5 years old; she does not walk, does not crawl. Her epilepsy and pneumonia are always exacerbated when the seasons change – saliva gets into her lungs during an attack [then] we go to hospital. This is a normal situation for me.  But when we were in the hospital, on the morning of February 24th, my husband came and said, “Do you know that the war has started?” 

I didn’t pay much attention to the news because I had a sick child in my arms. Doctors evacuated everyone to the basement; Sofia was on a drip. The first thing you think about is how to stay with a seriously ill child when there is a war in the country? Like most people, we thought it would not take long, that diplomatic negotiations would begin, that there would be no full-scale invasion, and that it would be safer near Kyiv. 

The first wounded were brought to our hospital. When we sat in the basement for several nights with an ambulance crew that brought our soldiers there, we realized the scale of this story. Sofia was stabilized. On March 5th the head of the medical department said that we needed to flee. Sofia was dependent on oxygen. We were looking for an ambulance, but they were all busy taking out the seriously ill and wounded people. We were waiting in line. On March 6th, two ambulances took me, Sofia and two other boys to Lviv. On the way, I managed to buy instant noodles and powdered milk for a child. We had no idea what would happen next.

At the border, one of the volunteers from Britain said – ok, I’ll take you to Kraków. Although he did not have a car yet. Then this volunteer intercepted the information on a walkie-talkie that a German ambulance was returning from Ukraine, and they took us from the border straight to the hospital in Kraków. That was the first time I saw how strangers cared about our needs, how selflessly they helped.

In Poland, palliative care is very different from Ukraine. There is more medical support here, the state finances this area well. I know exactly what I’ll be doing when I return home. There are so many useful experiences we can implement to support children with disabilities in Ukraine. 

Text by Vira Baldyniuk
 

An exhibition by the Galicia Jewish Museum,
Krakow, Poland

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