It has been 15 years since I met Edik and Sasha for the first time. I had been told about the boarding home for children with disabilities, and they were living there when I began visiting it on a regular basis. They were about 12 or 13 years of age at that time, and I did not spend a lot of my time with them; I was more focused on the children who I thought were the most likely to become actors in our productions. I was conscious that many children with Down’s syndrome may have poor speech skills, especially if they grew up in an institution. This was true for Edik and Sasha. We were most interested in the children whom we could expect to make progress – memorizing their lines, learning how to position themselves on stage and acting with expression.
One day, as we were working on our production of The Emerald City, one of the girls who was playing Dorothy had fallen ill and could not come to the rehearsal. But Edik was there. He was curious, active and always on standby. We let him step in for the missing girl out of necessity – so we could keep the rehearsals going.
To our great surprise and astonishment, we discovered in him a brilliant, convincing and truly charming actor. His speech was unintelligible, but his own way of talking was far more expressive and engaging than the performance of a hundred professional narrators with the most perfect diction. At some stage, he had to call his beloved dog Toto, and the way he did it – audibly, without a stumble, and very lovingly - made us all fall off our chairs.
His acting was brilliant and powerful. Eventually, Edik became the star of our production of The Little Prince, a real cherry on the cake! There were so much freedom and light-heartedness in him… He felt comfortable in any situation and improvised on stage with great ease. The audience just loved him!
However, Edik is not playing in The Little Prince at the moment. He is suffering from a heart condition, and it is serious enough to have kept him from coming on stage for several years.
Sasha, Edik and all the other children in their institution have an invisible connection among them, and it is quite strong – much stronger than most others - who consider themselves as ‘regular and able-bodied people’ - could ever imagine. When Edik fell into a coma, and doctors said that his chances were very slim, you should have seen a deep concern and sincere love with which the other children were asking about his progress and how much they wished to see him in hospital, and the outpouring of joy at Edik’s return.
They celebrated it as his homecoming. How much is their idea of a home different from everybody else’s? I am not sure. All I can say with confidence is that every one of these children has a great thirst for love, care and attention, and a desire to discover and live their true selves. I can see this in Edik when he asks me to bring him to my home, or at least to let him come to the show or just take him for a walk. But his choices are becoming more and more limited because of his condition. Sasha is more fortunate in this regard. He sometimes gets to spend a weekend with his sister. Every such visit is a moment of great celebration for him.
Edik and Sasha are very different. The differences start with their outward appearance. Edik is a self-starter; he is always full of ideas and ambitions; he experiences myriads of emotions within a minute. Physically, he is slim, light and agile, despite the extra strain that this may put on his heart and the corresponding risks, given his heart condition. Sasha is his direct antipode. He is as solid as a rock, outwardly and inwardly. When he is being stubborn, there is hardly anything that could make him waver.
Jokingly, I used to call him the rock-solid Sasha. The other children disagreed: “Don’t you see how soft and sensitive he is!” They are right – he is very charming indeed, and truly loveable. The only reason why he had not joined our troupe earlier was that he was so slow to move; sometimes, it seemed as if his point of gravity was located so close to the floor that forcing himself to get out of bed and start moving was like a grand exploit to him.
But when he finally joined our company, we realized how valuable and indispensable he was. In the beginning, he was quite cautious. However, the public’s warm reception gave him wings, and eventually, he learned how to put to use his irresistible charm and reap the reward - a long round of applause.
Whenever he is not acting, he takes on the role of ‘director’ at his ward. His peers chose him by unanimous consent, and. Sasha takes it seriously and exercises his authority wisely and fairly. He encourages everyone to share their ‘material assets’ – such as pens, magazines, candy wraps, and most importantly, treats so that nobody is left out. In this, he has the full support of the children who are completely unselfish and will gladly share with another whatever few possessions they may have. Although their lives do not seem to be colourful or very exciting, the children possess one remarkable ability – to see around them a world that is full of kindness and joy.
To complete my remarks, let me tell you about a remarkable incident connected with Edik that impressed me a lot and made me reflect on some very important things in my life.
We were told that Edik had had a stroke and that he may not survive, and afterwards that his survival was a sheer miracle. Only a few hours after the crisis, my telephone rang. It was Edik. He sounded cheerful and full of life; he went on about The Little Prince and all the things that he liked and enjoyed doing.
He spoke a lot, but the topic of the conversation was not important. His main message was that he was alive and happy to be with us. Amazingly, he did not say a word about having been at the brink of death only a few hours before; he was telling me how delighted he was to be living at that very moment and to leave all the things that may come to God’s will.
To me, this was a moment of truth and a precious lesson in the art of being happy.
Tatyana Dashkevich is a known Russian and Belarusian poet and fiction writer, a firm Orthodox believer, and mother of two children. What impact should a writer's works have on the reader? We asked Tatyana to share her thoughts.