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Journey of pain; tale of mother and disabled kid

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Meeting her for the first time, she looks like any ordinary woman enjoying the fruits of motherhood. But it is when you visit her house at Chitipa Boma and listen to her story that your misguided impression falls down to the earth with a thud of pity.

Agnes Mwanginde, in her 50s, comes from Mukombanyama Village in Traditional Authority Mwaulambia. She is a mother of six; three girls and three boys.

One of the boys is Manuel Mbeye Mwanginde, the last born in the family. At 18, he is supposed to be in the prime of his youth. But he cannot. He is a young man with a disability.

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Paralysed at the tender age of six, Manuel cannot move, turn or feed himself. He spends all time indoors lying down on a palm mat.

His speech is so impaired that the only words coming out of his mouth are mumblings like that of a toddler in early speech development.

Mystery’s beginning

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The genesis of Manuel’s current condition is as baffling as it is unclear to her mother. All she remembers are the good times he had as a regular child before he was chained to this predicament.

“He liked playing football with his friends. Then one night he started crying, complaining about body pains,” Mwanginde says.

She took him to Chitipa District Hospital where they spent three months without any success.

“His legs were completely dead. The doctors did not say what was the problem and we were discharged without being assisted,” she says.

This troubling situation marked the beginning of a painful journey into the future. Everything fell apart.

Firstly, her husband walked away from their marriage of 30 years. According to Mwanginde, the man barefacedly told her that he did not want to be associated with “this curse”, somehow a remorseless and arrogant reference to the son’s paralysis.

This was in December 2003. The man took away everything, condemning the family to absolute poverty which is haunting it up to this day.

“We had large pieces of land where we used to grow tobacco and some subsistence crops. We had enough to sustain ourselves the entire year. We were a happy family but all that went away in a flash,” she says.

The man remarried and now lives in Mwamukumba Village, about 30 kilometres away from the town. Mwanginde has tried to seek support from the man through various channels in vain.

“He vowed that even if the police could arrest him, he would never provide any support,” she says.

Mountainous care

Secondly, raising six children alone has not been easy for her. The condition of young Manuel makes it even a difficult job. But it is not a job. This is the power of motherly love that transcends any form of hardship.

For a woman committed to doing the best for her family, she balances her business of selling fish at Chitipa Town Market with taking care of her son with a disability.

Since Manuel cannot walk, wherever he lies, becomes his home and toilet. The mother does everything; bathing him, changing clothes and beddings and washing.

The task of maintaining a comfortable place for her son is a routine for Mwanginde. That means changing of beddings and clothes, which usually do not last long.

“Things like clothes and beddings wear out very fast. I wash them frequently because of the urine and waste. The plastic paper cover we put on top of the beddings just assists partially,” she says.

Interaction with other people is minimal for young Manuel. The mother has to find space between her crammed schedules to cheer him up.

In a family of six, you would expect some members to be around to lend a hand. But most of them are not. Two boys are away, one is a welder and lives in Kameme, 12 kms away from the boma and the other one is at school in Wenya.

One daughter is at a nursing school in Mzuzu while the elder one is temporarily back from her marriage after having an operation due to a complicated health problem. She can hardly assist. The mother has to look after her too.

“It is not easy but they are my children,” Mwanginde says.

Then comes economic hardship. Mwanginde and her family moved to a rented house when theirs collapsed due to a heavy rainstorm in April last year. She parts with K5,000 as monthly rentals.

Her daughter at St. John of God Nursing School is in her first year. She needs K300,000 as her contributory tuition fee. The mother has managed to pay K180,000 by selling the only head of cattle she had. She is not sure how or where to get the remaining money.

Adding to the selective taste of her son with a disability when it comes to food, here is a woman carrying the soul of the whole world on her shoulder.

“He wants to eat rice or nsima with chicken or fish all the time. When we prepare only green leaves as relish, he looks away,” she says, adding that her small business cannot meet the family’s basic needs.

Elusive treatment and support

Mwanginde has been to several people and places to seek help for her son; hospitals, traditional doctors, churches, prophets and many more.

In May last year, she took Manuel to Kameme Health Centre where she had heard that people from Malawi against Physical Disabilities had come from Lilongwe City to provide treatment and care to those with physical challenges.

“They just examined him and said they would come back. But we are still waiting up to now,” she says, adding that she used to exercise with Manuel as improvised physiotherapy before he started suffering from epilepsy a year ago.

“When I get the cure for his epilepsy, I will resume giving him some exercises but right now I cannot risk that,” Mwanginde says.

But in this somehow hopeless situation, there are times when Mwanginde finds comfort in the little support she receives from church and the newly formed Chitipa Disability Consortium (CDC).

The choir at Chitipa Church of Central Africa Presbyterian (CCAP) assists through the provision of food and clothing items, according to Mwanginde.

The moral support largely comes from members of CDC who visit their friend several times in a week.

“Since Manuel is unable to go out, we always visit to cheer him and the family up,” says Wisdom Tembo, Chairperson for CDC.

He says his organisation is in the process of sourcing finances and other forms of help for Manuel and other people with disabilities in the district.

“We are looking for assistive devices like hearing aids, clutches and wheelchairs. For our friend Manuel, he needs a wheelchair,” Tembo says.

Salvation in wheelchair

Manuel cannot sit properly on a bicycle and when going to the hospital, he has to be carried in a wheelbarrow. Even that too is not comfortable for him and the mother.

“We put blankets as a cushion but it does not help much as he still cries a lot in the wheelbarrow. I am also not happy with this mode of transportation.

“This thing was made to carry other things not people. It is demeaning to human dignity but what else can I do,” Mwanginde says.

She adds that the immediate help her son needs is a wheelchair.

“It will give him the chance to go out and interact with people. Furthermore, I would like to take him with me to the market and that would be refreshing for a change.”

But Mwanginde does not have the money to acquire one and she only hopes that one day salvation would dawn on her son through the wheelchair..

They say every day is a challenge but we have to pick up the pieces and move on. That is exactly what Mwanginde has been doing since her husband deserted her more than 13 years ago.

To assist Manuel, call on 0888 998 884 or 0999 382 617 or email: wakawemo@gmail.com

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