4 Oct 2005
Njei Endam Akum is one of my three children. She is a special kind of child because of her peculiar disability. She was born some eleven years ago. At birth, she had low birth weight and persistent high temperature. I was later called by the paediatrician and after brief counselling, I was given the sad message. The doctor informed me that the child is a ‘Down syndrome’ case. Being a pharmacist, I knew this was bad news indeed.
Down syndrome is a genetic or more precisely a chromosomal disorder that is present right from the formative stage of the foetus in the womb. The typical physical features of a Down syndrome patient include: a small skull, flattened nose bridge, large tongue, low muscle tone throughout the body and typical facial features. A child born with down’s syndrome will certainly have learning disabilities, speech problems and is more susceptible to heart abnormalities and thyroid disorders.
The first difficulty I faced was how to explain the child’s condition to the mother and the rest of the family considering that genetics is a difficult topic even for biology students. I tried hard but it was difficult to sell the ideas convincingly to all given the superstitious context of our environment. Some people alleged that the child was a ‘spirit’; others said it was a snake, and quite a number believed the child would never walk. It was quite traumatic especially for the mother who was not only battling with the reality of a disabled child but also with the superstitious stories pertaining to the innocent baby. For me, there was no question of doubting the doctor’s diagnosis but in Africa, rational scientific pronouncements do not necessarily lay all matters to rest.
Faced with pressure particularly from my late mother-in-law, I had to take the child to the ‘witch doctor’ or herbalist. This was not out of conviction, but an attempt to exonerate myself from accusations of negligence in the future. I did not want to give room for anybody to tell me that if you had done this the child could have been better. My experience with the so-called ‘witch doctors’ was a revelation indeed. I discovered that these people thrive on evoking fear and applying a form of ‘intimidation psychology’ on their patients. In the course of tending to my child, the ‘doctor’ even opted to protect me from an imminent fatal accident involving my car! I politely turned down the request. I am still alive ten years after the supposed date of my death by car accident. Many African families are tearing apart because of lies from these ‘doctors’. I can now appreciate the dilemma and confusion faced by less informed parents who have children like Akum.
Regardless of her disability, she always wears a happy face and is friendly with virtually everybody. One of the thing she enjoys much is singing but the handicap imposed on her by downs syndrome remains a stumbling block. When she was younger, she would cry if you failed to sing the song that she was thinking of at that particular moment. You had to guess tune several songs to get at the one she needed. She will then be clapping while you sing. I used to wonder why God should create a child with speech problems and yet make such a child so devoted to singing.
Akum has outgrown the lies of the witch doctor. She is now a beautiful eleven-year-old girl living with us in Douala. She did not turn into a snake nor did she fail to walk. Yes, she has her peculiarities. Akum’s large tongue distorts her speech and makes it difficult to understand her. She has spent six years in school but is barely able to write letters of the alphabet. On the contrary she is more mature in her behaviour and socialization than even her elder brother who is a normal child. She stopped bedwetting before her elder brother did. She is magnanimous when appreciating a gift or a favour. She will remind you to pray before you eat or go to bed.
Akum is fun of making a mockery of me. “Daddy chop chop big belly” she will say. Her repeated criticism of my “big belly” made me to sit up and start paying attention to my weight. Within the past six months, I have shed eight kilograms from my initial ninety-five kilograms, thanks largely to her. When Akum is asked to say a prayer she will usually say ‘Oh God, thank you for mom, thank you for Anna (sister), thank you for Fidel (brother), thank you for mama (her aunt), thank you for daddy and computer…She makes sure she associates me with the computer in her prayer, maybe because I am most of the time with it.
Due to her speech problems, there are times that she says something and I do not understand. She repeats the sentence and tries to add some sign language. If I still do not understand her after three or four trials, she will just smile and drop the topic. I’ll then have a feeling of guilt descending on me for not understanding her esp. more so that she is not angry about my incomprehension.
Her open mindedness coupled with friendliness has made many people to know her. Some years back, I once met a woman who talked about her without knowing that I was the father. She talked of my sister Njei Grace (Akum lived with her when she was younger) always moving with a little girl that had the characteristics of a fool. I replied that the little girl was my beloved child and she is a Down syndrome case. This woman was very embarrassed and felt guilty that she had unknowingly hurt me. I did all I could to comfort and reassure her that I was not hurt. When you have a child like Akum, you should be prepared to hear all sorts of comments that may range from expressions of sympathy to outright insults. The essential thing is not to get even with those who make negative comments but to educate them. Most of the perceived negative comments are borne out of ignorance.
Living with Akum has been like going through a kind of new school. I can now better appreciate the diversity and multi coloured nature of life. We, the normal people spend all our time fighting to grab more knowledge, more money, more power and other advantages. People like Akum have no goals to attain and paradoxically they seem to be happier than the rest of us. They are devoid of envy and do not have enemies. They do not understand concepts like tribalism nor any other form of discrimination. The only thing these type of people need from society is love. They are not interested in your dollar bills. Sometimes, as a parent you start to bother about the fate of such a dependent child after your departure from this world. Yes, you must be worried because you are not like Akum. People like Akum know that everybody around is a parent and they hardly bother about tomorrow.
Copyright ã 2005 by NJEI MOSES TIMAH
Njei Moses Timah