July 1, 2016 | Bipasha Ghosh
A few years ago, our family shifted to a new house. Our neighbours, Mr and Mrs Francis, were expecting a baby. The excited parents were painting the house a neutral yellow to make space for either a boy or a girl child. They were always over at our place – seeking advice from my mother (the proud and experienced mommy of two). A couple of months later, the big day arrived, and Sandy was born. But everything came to a standstill.
Mr and Mrs Francis were devastated. They’d been told that Sandy has Down Syndrome. Down Syndrome is a genetic disorder which results from the presence of chromosome 21 in the cells of the body. The frequency of Down syndrome is 1 per 1150 newborns in India according to a recent study. And Sandy was one of them. There were tears and consultations and whispers about giving Sandy up for adoption. Well-wishers and neighbours came and went, and the Francises finally accepted Sandy as their own, for better or for worse. But still, they struggled to come to terms with the grief of having an ‘imperfect’ child.
In India, we generally follow ‘the more, the better’ thumb rule, but somehow this philosophy doesn’t apply to extra chromosomes. Society often sees persons with disorders such as Down Syndrome as ‘cursed’ and ‘abnormal’, making it difficult for them to live and thrive like everybody else. Can you imagine what this would do to a person’s mind and soul?
All the credit for Sandy’s early development was due to their family physician, Dr Singh, who always went the extra mile to help Sandy. Sandy tried to learn English, trying industriously to speak and write the language. She tried and tried, and all that would come out were broken words of an alien language. But Dr Singh never gave up. Can you imagine the life of a tiny 4-year-old, isolated from the world? Without friends? She never understood why she was ignored by other children or, for that matter, by the rest of the world. Sandy hated getting clicked; she could sense the awkwardness of the person behind the camera.
Since olden times, we have regarded people with any abnormalities as outcasts and tried to shut out their suffering by avoiding them. But was it Sandy’s fault that she was born with an extra chromosome? Did she choose this for herself? According to studies conducted in the West, 75% of the Down Syndrome population suffers from hearing loss, 50–75% with sleep disorders and ear infection, 60% eye disease, 22% psychiatric disorders, and 50% from heart diseases. On top of these physical health challenges, we add generous helpings of discrimination, isolation and psychological hurt through our judgemental attitudes.
Reality struck Sandy when she turned five and became the sister to a two-day old beautiful baby girl. Looking at her perfect features, she asked her father, “Why am I ugly, Papa?” This was the first sentence that Sandy had ever spoken. With teary eyes, Mr Francis realised that their grief had made Sandy feel abnormal and hurt, and he vowed that from that day on she would feel nothing but loved.
Today, when I see Sandy running around the playground with her sister and friends, all I can think is that my faith in humanity and this world is restored. I have seen Sandy grow up. Seen the way she cares for her baby sister: no one could be as protective as she is. With love to back her up, Sandy knows that she is God’s special child and was born with the mission of spreading happiness and smiles. She adores the fact that people look “amazing” when they smile. She dreams of helping others and making them smile. And tell me, how many children of her age have such a noble thought? At times, I wonder where all this love comes from. Is it the extra chromosome that teaches one about perspective, love, life, and happiness? Be extra thankful for the extra chromosome is all that crosses my mind.
I am confident that Sandy will shine in her life. Grow up to become an angel for all those who are around her. She teaches me that, what makes her different is what makes her beautiful. It is a fact that these children may be different, but I have learnt from Sandy that this should be seen as a positive rather than a negative. She says being different means that “You have something unique to offer to the world, nobody can replace me. People might laugh because I am different, but I think they all look the same.”
Purple walls, petite vintage interiors, toys scattered all over the room; two beautiful girls in deep slumber. At the end of the tiring day, I have seen the glow on the faces of Sandy’s parents as they see their two perfect girls sleeping happily, and their gratitude for the fact that they kept their faith.