They are born in all corners of the world and they look like twins. They grow older as if members of a separate nation. The shortcomings in their intellectual development Nature compensated with a sea of goodness of character. They are very emotional and open to share all the warmth they are capable of. They are the children with the Syndrome of Down. Is it a curse or a destiny?
Thirty years ago was the time of my youth—I got my university diploma, I got a good job, I had a happy marriage and I gave birth to a beautiful little creature—a son—the sun of my life. But I thought that my happiness was not complete, I had to have a second child. And then the time came—a normal birth, a big event for my family, perfect baby care preparations. We christened the baby, we were very happy, we went for long walks in the open. Nobody suspected anything. I myself did not see anything to worry about. At the hospital nobody mentioned anything to me or to my relatives. Time passed and one day while sleeping, my baby cried and I could see that he couldn’t breathe and turned blue suffocating. I called Emergency—the doctor on duty was not a paediatrician. He looked at my baby and said: ‘The baby has a handicap. It is a rare syndrome and there is no treatment for it.’ I felt like I was struck by thunder and my heart was pierced by lightening. I felt like I had been read the death penalty.
When I took my baby to be seen by specialists in genetics, they described to me a doomed life for my family, leaving us with a lot of questions: how long would the baby live, what would his life be like, why such a thing happened to us? From then on my destiny was to follow a difficult road with many obstacles.
The world is such a wonder, but it is like this because not every day is a sunny day. If the sun shines all the time, the Earth would have been a desert. I felt like a thirsty traveller in a desert, looking for the oasis. I yearned for salvation, asking myself why nobody had told me anything. Was the doctor so ignorant or he just didn’t care?
I remember regularly visiting the baby center during the first seven months for examinations and vaccinations (later on I understood he shouldn’t have been given those vaccinations). The paediatricians kept silent and nothing was written in the medical file of my baby. I felt very grave and hurt, but I hoped there should be someone somewhere who would be able to help my little son. I took my baby to be seen by the most famous specialists in the capital. Within three months of trying, I understood nobody could treat Down Syndrome and I thought: ‘The life of my son will grow into ashes blown by the wind in an unknown direction.’
He got ill very often. He grew bigger very slowly and when I took him in my arms, he felt like a cloth ball without any strength in him. His small head swung from side to side as a broken flower. I couldn’t see any life in his eyes, as if the spark had died out. And then I received a letter from the hospital. I had to go there for a check. I felt hope growing inside. I thought I was going there to hear good news. There I met 15 mothers with their 15 small children just like my son. They were about a year old, but they couldn’t do anything that other children at this age usually do. A commission of several doctors examined the children and then they explained that with time we would have more and more difficulties caring for the children. The children would not be allowed into kindergartens—they would need special training, staff and care—and the state provided these for such children with mental and physical disabilities. There were special hospitals for children where such were taken care of and medical services were provided, special education was offered to the children, like anywhere in the world (we were told). We had time to think it over- We had to decide for or against it.
My maternity leave was coming to an end. I had to go back to work. I had to take care of my other child. We lived in a rented apartment and there was no one to offer help. We decided that we should give our child away—it could be for the better. We filled in the forms, gathered his clothes and on an ominous day our child was one of the 15 small white birds that flew away in an ambulance—as if a rocket took them to a different galaxy.
If you look around you will see a beautiful nature—an ancient forest and three enormous hospital buildings surrounded by high walls with a big entrance door guarded by a man. We tried several times to enter, without any success. We were told we were not allowed to visit and we would be informed about the ‘changes’ in a written form. After three months we received an envelope with an informative letter in it, saying that the children would live not more that two or three years, and several medical papers with different diagnoses. A year passed and three of the mothers were asked to go to the hospital where we lived. We were told that our children had died and that the state had ‘taken care’ of everything. We had to accept death as a natural event. But I felt enraged and I hated myself- I suffered because I felt guilty. The thought that I hadn’t done more to help overtook me. I criticised myself, but I was helpless. We had a memorial service and everything else when a person dies. On holy days I lit candles and prayed in secret: ‘Please God, take care of him…. Let him be alive….’ And if you strongly believe in something, it seems like a real thing.
Days passed, years passed, and when I remembered what happened, it seemed as if it happened in another reality.
Every person is responsible for his/her deeds, but every moment is a new beginning which takes us away from our past. I had to pick up the moment and start to live again there and then. My first child was stretching out his arms seeking help and attention. He gave me strength to continue. He needed love, attention, warmth and his mum. I felt pleased with my life. I loved and I lived in harmony. I let into my life only loving people because I could see myself in them. And then God gifted me with a beautiful girl—a gift in return for all my love. My children grew and filled my days with love. Now they have university degrees, they are married and they have children of their own. I believe I am a dedicated mother and grandmother. I have self-respect and I love my profession.
Sometimes our lives resemble a gambling game—you win, you lose. You lose a precious thing but then you receive in return something better, something which substitutes for the loss. We give away something, but we receive it back later on.
My daughter, whom God sent as a token, is an IT specialist in a prosperous firm. One day she had to try a new database programme based on the PIN of people. She had entered our family name and on the screen had appeared the full names and PINs of our family members, including the name and the PIN of her ‘dead’ brother. She did not confide with me, but started an investigation. It had been a very slow and difficult process. She kept everything in secret. She asked me many questions and I had to go back 30 years. At last she had found him in an institution for elderly people, 30 km from the town we live in. There had been no documents for him in the files of the institution. She went there to visit him and to assure herself that it was him. She wasnt certain from what she understood and from what she saw—then she decided to tell me. ‘Mum, your son is alive!’ I cannot find the words to express what I felt at that moment. The Earth turned backwards and I felt I sank deeper and deeper. I didn’t know whether to be happy or to cry with the pain I felt. I cried because I felt guilty that he had lived his life as a lonely creature, I hadn’t been with him in good or bad days. I cried imagining our reunion and me embracing him and telling him I was his mother. But I was not ready for this meeting. I cried for three days and I wished I could give away my life in return for a better life for him. I imagined him telling me, ‘Mother, I need you now more than ever!’ I gathered myself and made a decision. I took lots of tranquilisers and went for the meeting.
When I entered the institution I saw the awful living conditions and I smelt the stain. Clients in rags walked around in the open without any shoes on. There were people with walking sticks and in wheelchairs.
I asked the social worker for my son’s documents. I was told that the young man had no birth certificate or other papers. He had come from an orphanage, had no parents and could not hear or speak. They only had his three names and his PIN. I was very confused, many questions went through my head. Despite everything I thought: ‘When I see him I will know.’ And they brought him—a young man dressed like an old one, torn clothes, dirty and smelly. I thought: ‘He looks like coming through the nine circles of hell!’ He hugged as a wounded bird in my arms and uttered with a smile: ‘Mum!’ And all the questions I asked myself before went away. Nothing mattered anymore.
I visited him very often, I took food and clothes. I insisted that the staff give him a bath and dress him properly regularly. And he looked like a new person. He was not deaf. He couldn’t speak, but understood everything. I visited every week for three months. I looked for his documents. Some of them the staff found in other people’s files. His medical file was in such a bad condition that it seemed to me someone tried to erase information and cover a mistake. I thought I had to ask for a DNA test to be a 100% certain it was him. I felt like being at a crossroad. But such a test is very expensive. And then what if he wasn’t my son? I wondered how would I leave this child, he was the virtue itself- He needed medical examinations and treatment. His health was in a very bad condition. He breathed heavily and had seizures every day. I found specialists and took him to the hospital for treatment. He had to go to different departments for different tests and treatment. I also took him home for a while. I looked for information. I thought medicine should have developed these 30 years. I had to find a way to take him away from the awful life he had in the institution. I found many answers on the Internet. I printed many pages of interesting articles by famous scientists on questions I was interested in. But I was on my own, I had no direction to follow looking for help and salvation.
Then I met two ‘goddesses’, representatives of The Regional Society for Support of People with Mental Handicaps, a branch of the Bulgarian Association for People with Intellectual Disabilities. The organisation works for the improvement of the situation of people with intellectual disabilities, including their material, spiritual and social status. It supports many social institutions in the region. The organisation had built the first community group home for people with intellectual disabilities in the country. Four young men live there, supported by teachers who help them learn skills for independent living. The social service employs also qualified nurses and physiotherapists who care for the clients’ health and training. The group home is part of the social services for young people with intellectual disabilities. The director of these services is a real ‘messiah’ sent to relieve the pain and the suffering of all the 50 clients. He is committed, dedicated and compassionate to every young man/woman. He spares no effort and if he could, he would have taken medicines from God’s pharmacy so that he could see only happiness, not tears, in the eyes of these doomed children. My son, who is now 31, was lucky to go to live in the group home under the wing of this angel-saviour. The living conditions in the group home are excellent. The equipment is modern, there is audio and video equipment. The care is continuous. Four teachers—attentive, caring, loving them as their own children—give twenty-four-hour care. And their love is shared. There is tranquility and security in the atmosphere of the group home. The clients also have labour activities—they embroider tapestries, knit tablecloths, make cards. They also plant flower and vegetable beds. It is a real heaven to sit in the evening on the terrace, showered with flowers and vines and drink juice and to watch the sunset. You can read in their eyes happiness to live in the rhythm and in the flow of this always-changing life.
In defiance of everything good that happened, the health problems of my son came up again. With the help of the GP we took him to an elite hospital in the capital for an operation. The hospitalisation turned out to be favorable. He had thorough examinations, qualified specialists prescribed new treatment. The doctors were very caring and attentive. Now my son is a new person, full of strength and energy. He breathes normally and enjoys every moment of his life. There are also results of the training he receives. He knows the alphabet and uses 15–20 words. He can write dashes, circles and commas. He knows how to write 10 letters and he can count up to 10- He learned how to put his signature to a document. And before he was considered illiterate. He learned new skills, he puts everything in its place and he is very disciplined. When I take him with me for a visit we go to church; we light candles and make the sign of the cross to thank God that we are together again, even if it is somewhat late. We go for a coffee and do shopping, we go for a walk in the town park. He enjoys the visits, but at a certain time he wants to go back to his ‘home’ and his world.
Now I am sure that my son has everything he needs—a mother, a home, friends—he is very happy. He lives a life which is changing constantly.
There is always a beginning and an end. Life is a constant metamorphosis of matter and experiences; it is never static, frozen or uninteresting. I am so happy and I thank God that I am part of my son’s life. What I needed the most came at the most suitable time and place.
Everything in my world is in order!