Bhavana Nissima visited a home for children of HIV +ve parents in Chennai. She came away touched, informed, pensive, and in some inexplicable way, happy. More importantly, she learnt a few of life’s lessons she could only have learnt in that place. Here she tells us what these were.
I don’t think I will ever recover from what she told me. Earlier that evening I met this lovely girl, with dark skin and tresses darker than the night sky, and asked her if she was tense about her tenth standard board exams. She had looked up at me, full gaze and said: “Akka, we don’t know how long we will live. It is enough if we can study.”
She is an HIV +ve teen, one amongst the 34 children in a home set up by South India Positive Network (S.I.P) to care for children of HIV-infected parents in Chennai. No, all the children in the home are not HIV infected – about 27 of them are. But all are born to parents with similar conditions and have been abandoned due to their inability to care.
Children are children and so are teens. Each one is naughty, each unique, each with special characteristics, each with their own tantrums. But children here are more ‘touchy and feely’ than kids in other homes. They hug you, hold you, ask to feed you. Almost as if they are over-compensating for that subtle sense that they are stigmatised in the society, that their touch is not exactly welcome.
Thilak, one of the coordinators for Sevai Karangal, explains that volunteers from his group deliberately play with the kids so that they realize that they are in most ways similar to other kids. He says kids perceive that and so tend to be closer to the volunteers from his group than when strangers approach.
Sevai Karangal is a completely volunteer-run NGO that has been working closely with S.I.P. home for the last three years, during which almost 500 volunteers have visited the home. The NGO raises money for the homes based on a needs assessment. They also serve as a channel for Chennaites who want to celebrate important occasions in a meaningful way. Birthdays, anniversaries, festival days are celebrated at the home by sponsoring a dinner or a full day’s meal or sometimes by donating an amount for various necessities in the home.
South India Positive Network was set up by a transgender activist Noori, who is also one of Tamil Nadu’s earliest patients to be diagnosed with HIV. The network works with HIV patients and their family to provide humane care and social support, and helps to remove social stigma associated with the disease.
Children in the home have a normal routine – wake up, breakfast, school, play, homework, dinner and sleep. But they have to take immune-boosting medicines in the morning and evening. Once a month they have to go in to receive anti-retrovirals.
The life expectancy of the children is variable and unpredictable. It depends on the inherent strength of the child as well as the environment. Death hangs a bit low in these homes. But it is important to note that Noori, the founder of the home, has survived HIV for the last 22 years and is still hale and hearty.
One important point – I noticed that the kids in the home were rationed chocolates. Being a chocoholic, I was surprised since we had several to spare and I had an urge to pamper the kids. I later learnt that HIV-infected people cannot consume chocolate as the chemicals in it negatively impact the effect of the anti-retroviral drugs the kids have to take. I have had a hard time consuming chocolate after that day.
Each one of us suffers. And each one of us deals with it in our own way. In SIP home, there is an island of joy in which children cope and make sense of their disjointed and unpredictable world in their own child-like way. So the lovely dark girl with tresses darker than the night sky asked me, “Akka, will you come for my birthday? Last year no one came. I don’t want a cake. Can you get me some earrings instead?”
All photos courtesy: Volunteers of Sevai Karangal