Growing up with my Daughter
Nafisa, when she was five years old.
While packing, in a carton of personal memorabilia, I came across an old birthday card. A hummingbird in flight soars on a turquoise background. The message reads, “A bird does not sing because it has an answer, it sings because it has a song”. Written inside: “It is my first wish in your path of independence and happiness. Always sing your own song my dearest daughter, and never compromise in the song of your life and your intentions. I bless you and wish you success in your journey”. Rather philosophical for a first birthday!
It is dated October 4, 1978. The card is as good as new and the feelings as fierce as they were then. However, Nafisa cannot read my message nor does she quite understand my fervour for her. She is not a bubbly 22-year-old, enjoying adulthood, she is caught in a state of permanent childhood. Her mental age is that of a five-year-old. Physically, she looks around 6 years with a delicate build, sad eyes and thick, curly hair.
After the initial shock of being a parent of a spastic child, I realised that the advice given at school to treat her like a “Normal” child is worth its weight in gold. Quite early, I decided that I wasn't going to do just that but also treat her as a special gift. So what if she had a faulty gait, failing eyesight, acute dental problems, poor immunity, partial hearing loss, faltering speech, problems grasping? So what, at least she's mine! She is generous to a fault, loves shopping, and has the memory of an elephant. Her large motherly heart loves/hates and bosses over her brother, Anees. She has numerous traits that single her out as a very special person.
The truth is that she isn't really trapped in her childhood. She has grown in many ways and, more importantly, we have grown with her. We have grown in sensitivity, to her and to humans around us. I wonder if we could have savoured this had we not opened our minds to a child like Nafisa. I'm sure I would have gone through life skimming the surface.
You mustn't think of her as some poor frail thing. She could be quite a tough cookie! She demanded equal rights with Anees. Each year when the new school session began and we went through the ritual of covering books with brown paper, fancy nametags, she wanted all of that too. We often used to get into these mother daughter tiffs, and the final line from her was, “I'm going to get myself a new mama”. Once when I refused to make French fries for her as she had a bad throat, she got cross and declared, “I'm not your daughter, I'm going to the sky to stay with Hanumanji.” I continued in the same vein. “Okay, but don't call me to wash you.” I wasn't prepared for her answer: “I won't call you! Sita will wash me.” I was stunned.
This happened several years ago when the Ramayana was being televised every Sunday morning. And from the whole array of colourful characters she had picked out the right one, the one with a mother's image. Her understanding was more impressive than I had assumed.
My worst fears were realised when I discovered she was suffering from progressive hearing loss, though she wasn't born deaf. I was miserable at the thought of hearing aid cords entwined with the springs that keep her thick spectacles behind the ears. When she got the hearing aid set, I explained how it worked. She turned to me laughingly, and said, “Is this my remote control?” I learnt how brave she is about her disabilities. I need to match her growing confidence.
As part of Nafisa's home programme, developed by the Spastic Society, we had to do a lot of activities for her fingers and hands. She began with paper tearing, painting with fingers, and threading wooded beads. But after a while, the monotony set in and her mind was racing ahead. She would get the scissors and try cutting paper. I was hesitant at first lest she hurt herself, but she proved me wrong. So, we launched into cutting bits of cloth and making small collages. After that, it was the knife she wanted to help me cut vegetables. Within a short time, she mastered the art of cutting vegetables into small, almost regular, pieces. Everyday she would chop the veggies for our vegetarian dog's food. How well she had adapted her therapy to useful work at home.
I shall never forget the day when she showed the little mother in her. She was barely six and Anees was not yet two. I wanted to visit my next-door neighbour. Both kids were sleeping. I shook Nafisa, and explained that I was going next door and that she should not get out of bed. I must have been away for about 20 minutes. I returned to find Anees sitting at the small kitchen table, and a bright orange river flowing from the table across the floor into an orange lake. In halting words she told me, “Mama, little brother has got up and I'm making him a drink.” She had poured a whole bottle of water into a more than half full 2.5 kg tin of Tang, and both of them were pouring the liquid into his feeding cup. She looked so content. Anees has, naturally, over the years shot into a strapping young man while Nafisa has remained almost where she was in physical appearance.
Once, a farewell party had been organised for us as we were leaving the station where we were posted. Under normal circumstances, Anees would have looked after her, but that day he took ill, was medicated and asleep. Protocol demanded that we attend. I thought for a while, turned to Nafisa and told her we'd go to the party and return in half-an-hour. Before I could finish my sentence, she put my agitated mind at rest by saying, “Mama, don't worry, I will look after little brother.” I hugged her tightly in gratitude and left after locking the door from the outside. When I returned, I peeped through the window to find her sitting on a chair, which she had pulled close to the bed. She had placed a glass of water nearby. My little Florence Nightingale had applied balm on his head and was watching over him. Who said she hadn't grown up?
With Nafisa around, life has been so different. Yes, we've had our share of bad, sad moments. We've been at the receiving end of the cruelty of people. But, all those bitter moments fade away when I think of the goodness her presence has generated. The number of times we've met strangers who have come across with a helping hand not mere sympathy, but real understanding and an open mind. Many times it's because of Nafisa that those strangers have become wellwishers and good friends. Like Vijaya, Bunty, and Salina, her teachers in various schools. They are not specially trained teachers, just sensitive women, who took Nafisa under their wings. Or that kind ticket collector on the Goa Express, Mr Khan Yusufzai, who, when he found she was sick and vomiting on the journey, actually sprinted to the market outside the railway station at Agra when the train halted there for five minutes. He rushed in and gave us a packet of Electral he had bought within that brief time. And he called up the next day at our Pune home to find out if she was okay. Or, for that matter Jaswant Singh, the tailor at the National Defense Academy's shopping complex. He spent ages tailoring a dress, adding embroidery and a gold fringe, for her broken dolly, or the lady in Kuwait, at the spectacles shop at Sauk al Wattaniya, with whom we had a language problem. Finally, when we managed to convey to her that we wanted a frame for the child she took one look at Nafisa, who was then five, produced a beautiful frame and refused to take the money.
Under their tough exteriors, human beings have golden hearts. Perhaps, it takes a child like Nafisa, for them to discover their own potential, as it did for me. I know Nafisa in her own way has lived up to the message I wrote on the first card, she is the humming bird with a song which has so enriched our lives.
Now, Nafisa's condition has progressively deteriorated. A neuropediatrician who examined her says that she is a rare case whose faculties are progressively shutting down. She has become totally blind; both her eyes have cataracts, and we cannot even test her eyes, because she is heavily allergic to atropine. She copes with the blindness very well. She still reaches for the light switch whenever she enters her room. We took her to “See” the popular film Titanic. She would clap her hands in excitement when the sounds were loud. Her teeth are mere stubs in her mouth, so eating solid food was quite a task for her. But her favourites are still crisp fried things and she often goes on a samosa binge.
No longer can she come for walks to the nearby Gurudwara. Her gait is even unsteadier, coupled with low stamina. When the caring Pinto family gifted her a walker, we were able to take her out. The acupressure doctor tells me that I should just keep her happy, the rest she'll manage. Today, her hands have become her eyes and ears though her frustration at not hearing and seeing shows and she weeps bitterly without any reason. This is a lesson for me. My funds of patience increase with her growing problems. At times she spends endless hours playing by herself singing her own song, in a different sort of way.
This article was written in 1999 and printed in aarogya.com. It is being reproduced with the writer's permission.
Nafisa passed away on 18 June 2004 before her 27th birthday.
The writer Nisha Ghosh can be contacted at: firstname.lastname@example.org
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