Thus Goes Jyothika…

People around us never cease to amaze us or disappoint us. We, in turn, do the same. Over the years, we have seen a lot of children dying. We have seen all those parents going through the most intense pain possible, that of losing a child. By now, we think we know what to expect and we think we know how to handle it.

Then comes Jyothika. We met Jyothika long before Aroh, in Make-A-Wish. She was a pretty, bubbly 11-year-old whose wish was to have a “big Teddy Bear”. She was diagnosed with ALL (Acute Lymphoblastic Leukemia) then and was admitted at Ramakrishna Hospital. It was before the disease got the better of her or before the chemo ravaged her. Volunteers met her 3 or 4 times and one thing that stood out in those meetings was that Jyothika’s bystander was always her father, and never her mother.

Three years went by and we started Aroh. Few months later, we met Jyothika again in Ramakrishna. She had relapsed and this time ALL had done its work on her. She was a very pale and bald version of her former self, but still bubbly. She was sent home soon after as nothing more could be done at that stage. Again, it was her father with her in the hospital. This time we noticed it more as she was a 14 year old teenager now. Aroh kept in touch with the father and when she started deteriorating, we arranged for her to be brought to the hospice, Raksha.

We were all waiting at Raksha when the ambulance came. Though we knew what to expect, we were shocked at Jyothika’s appearance when the stretcher came out of the ambulance (As you can see in the picture). Jyothika’s father got out from the front seat, in tears. 2 more people came out through the back and we all turned and started walking into the hospice, following the stretcher. Then comes the delicious smell of jasmine flowers, the seductive “jhil jhil” of anklet, the tinkling sound of glass bangles and all of us turned, including the stretcher bearers. She comes out..khol-lined eyes, big red bindi, lips smeared red with pan, a flowing red sari and blouse, jasmine in her hair, bangles on both her hands, she smiled at us. There was something surreal about that moment. In my mind, everything is in slow motion. The shock in everyone’s eyes, the contrast between the child on the stretcher and this woman, and in the background Jyothika’s father saying, “Jyothika’s Amma”.

Jyothika was barely conscious and in severe pain. She was in Raksha for 3 days. Second day when we visited, the nurses asked us if it was really Jyothik’s mother. According to them, she changes her sari 2 times a day and is very particular about the flowers in her hair and having biriyani for lunch!!! Father was a silent figure, sitting in a corner, always crying. Jyothika’s mother became the star in Raksha! And Jyothika screamed “Go away” every time her mother was near her. She kept on asking for her Patti. We learned that Jyothika had 2 elder brothers in their 20s, who never came to visit her. 3 days later, it was decided that they were taking her home as she wanted Patti and Patti also wanted to see her.

Our volunteers met Jyothika immediately after that at her house. Patti was always with her and her mother was not allowed inside the room. Jyothika passed away few days later. Usually, our bereavement services will continue but it was not needed here.

We can never understand the dynamics of a relationship by peeking into it as an outsider. My last blog about Deepak’s father started a heated discussion in our WhatsApp group, which I appreciate. I am not judging here but merely observing. I write about kids and parents who made an impact on me and on those around me. I will never forget the first sight of Jyothika’s mother…the scent of jasmine…jhil..jhil..happy tinkling of bangles…red bindi….the smile….:)


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