The full support and encouragement from her parents enables S.Bhuvaneshwari to lead a better life inspite of suffering from a rare disorder
S.Bhuvaneshwari is 18 years old. But her skinny frame and small height make her look half her age. She suffers from a rare medical disorder that affects less than four per cent of the world population. In India, the prevalence rate is said to be less than two per cent. In remote Singampunari village in Sivagangai district, Bhuvaneshwari happens to be one among far and few suffering from scoliosis.
It is a complex three-dimensional deformity in which a person’s spine is curved from side to side in the shape of “S”. Born with it, she suffered delayed milestones during her growing up years.
Today she has turned a new leaf having enrolled as the first student in the one year training programme for nursing assistant at M.S.Chellamuthu Trust, Madurai. This means she stays away from her parents for the first time at the Bodhi rehabilitation home run by the Trust. She rides an auto daily to her workplace – the Vriksha also run by the Trust -- where she is in charge of 13 women residents. Her role as a supportive staff includes bed making, cleaning and rendering any help required by the patients as in a regular hospital.
Her broad smile reveals she is enjoying the work. “I am very happy,” words come out little garbled. She is blessed with good memory. It is only her body size and contour – her one hip and shoulder appear higher than the opposite side – her feather weight and weak limbs, the slightly slurred speech and the inability to write and borderline mental retardation that make her life tough. But she makes herself popular with her extremely friendly nature, good behaviour and compassion for others.
“We miss her at home and take her every weekend,” say her parents S.Shankar and S.Lalithambigai.
Traumatising and overwhelming it was for them initially to cope with the unexpected blow. Though they sunk into a long spiral of grief, they decided to give their daughter a normal life and everything that they could.
“She just has to tell us what she wants and I get it for her,” says Shankar. “She has always been more pampered than our elder daughter,” adds Lalithambigai. Every pint of happiness they spot in Bhuvaneshwari’s face gives them the strength to carry on positively.
The psychological adjustment of the parents in bringing up a child with any form of disability is what later defines the child’s life. No doubt it is a mountain to climb and Bhuvaneshwari’s parents left no stone unturned ever since they encountered her first major complaint -- neurodevelopment disorder and a black abscess in the retina. At the age of seven, the child went for her first surgery and ever since her appointments with doctors and surgeons have been countless.
“It took us some time to get used to her condition,” says Shankar. The parents never allowed any negativity to set in. They constantly searched for supportive learning environment and helped Bhuvaneshwari complete her class X.
Fighting their tears Shankar and Lalitha over the years learnt to react to their child’s disability and to each other. “When we go out with her, she becomes an object of curiosity for others. But we treat her normally and brush aside any form of sympathy,” says Lalitha.
Since Bhuvaneshwari does not suffer any kind of physical pain, her parents decided against a surgery for scoliosis. “It’s a complicated surgery with multiple risks and no guarantee for correction of the spine. We do not want to cause her any more hurt. She is doing quite well for herself now,” says Shankar.
What helped them to tide over many emotional crises was Bhuvaneshwari’s boldness and courage, smile and positivity. “She never throws tantrums. Wherever she goes and whoever she meets, she leaves a lasting impression,” Shankar proudly declares.
“Bhuvaneshwari is very focussed and task-oriented,” points out a member of the Trust. “She takes care of and disciplines her team well. If someone does not listen to her, she immediately brings it to the notice of the social worker,” he adds.
At home, she loves to take charge of the puja room. She also got a pair of parrots and a fish tank as Pongal gifts from her parents this year. Simple things make her happy and strengthen her confidence. The attitude and approach of her parents despite their moments of weakness is worth imitating.
“As a family we have a tight bond – everything is out in the open and we all know each other really well, communicate with each other in a very understandable language,” says the couple. “Our daughter is a real fighter and as parents we get a lot of love back,” they add. Such rewards do ultimately outweigh the hard stuff parents undergo.
(Making a difference is a fortnightly column about ordinary people and events that leave an extraordinary impact on us. E-mail firstname.lastname@example.org to tell her about someone you know who is making a difference)