Loide Jason 

Imelda Munika

REHOBOTH - A mother of a 16-year-old girl suffering from cerebral palsy is facing considerable challenges meeting her daily needs. 

Konie Koksi (40) who resides in Rehoboth’s informal settlement of Bugershoek said her daughter Thomara’s condition is demanding as it requires specialised care making it difficult for her to even think of seeking employment. Thomara, according to Koksi, requires supervision 24/7.

“The thing is she cannot do anything by herself. I have to do everything;  feed, bathe, and change her nappies. Every third month, we need to go to the hospital for her check-up and she doesn’t have a proper wheelchair that we can use,” she said.

Cerebral Palsy is a neurological disorder that impacts a person’s motor skills, muscle tone, and movement. It typically results from brain damage during early development or childhood, impairing muscle control and physical tasks.

According to Koksi, she is struggling to raise and care for her daughter whom she hoped would one day be a productive member of society.

She said that dream was shattered when Thomara started having developmental challenges as an infant. 

“I had a minor issue during her birth. I cannot recall how or when it all started. I did not know that she was disabled. So, we only found out when Thomara turned four. That is when we became aware of her situation,” said Koksi.

She said this marked the start of a new phase in their lives, a phase filled with difficulties and an unwavering dedication to Thomara’s daily care.

“My daughter is now a 16-year-old teenager who has never set foot in a classroom due to her disabilities, although when I was pregnant, I had hope that I would provide her with quality education for her to become relevant in society,” said an emotional Koksi.

Koksi stressed the misconceptions some hold about her situation, underscoring the exhaustive nature of her responsibilities. 

She said Thomara requires nappies and milk daily. According to Koksi, as Thomara grows older, her needs are becoming more. Thus, she has reached out to hospitals and community leaders for essentials such as nappies, milk, and disability grants.

Taking care of a non-communicative disabled child is a challenge, especially when they fall sick, according to Koksi.

“As a mother, you should know what her daily needs are without her saying what she wants or need. When she is sick, I should be able to tell because she is not able to communicate with me. So, I play doctor on my own and tell how she is doing and it is a challenge sometimes for me,” explained Koksi.

She said without a proper wheelchair and transportation, taking her daughter for routine checkups is difficult.

Koksi’s dual role as a mother and makeshift doctor highlights her profound commitment to her daughter. 

Thomara a diva teenager

As Thomara grows into puberty, her needs become more complex, said Koksi.

“As a teenage girl, her needs have evolved due to hormonal changes, requiring a continual adjustment of care,” said Koksi.

She said Thomara’s mood swings have added another layer of complexity, necessitating Koksi’s vigilant efforts to understand and address her daughter’s emotional needs. 

“Sometimes she has really bad mood swings which I don’t even understand. But little and surely I am getting to know her better as days pass and she is my first and only child. She is now a teenage girl so her needs have increased from what it was before with the change of hormones I’m very careful,” she said.

Financial challenges

Although Thomara now receives a disability grant, securing it was a five-month ordeal filled with bureaucratic barriers.

 Koksi said the money is not enough to cater for her daily necessities. 

 “This situation is very challenging for me as I cannot go to work because she needs attention constantly. I cannot leave her with people or even family members because they won’t be able to take care of her as me, her mother,” said Koksi.

She further said “For me as a mother, it is really difficult and disheartening when people think what I am going through is something small. What I am going through is not easy,” said Koksi.

She said despite the hurdles, her unwavering dedication to her daughter’s well-being remains intact.  -ljason@nepc.com.na