Caring for children while rebuilding own future

DAR ES SALAAM: CEREBRAL PALSY (CP) is a group of neurological disorders that affect movement, muscle tone, posture and coordination.

It occurs when the developing brain is damaged or does not develop normally, and the effects can range from mild difficulties with movement to severe physical limitations.

Some children may struggle to sit, stand, walk, speak or control their movements, while others may also experience difficulties with feeding, vision, hearing or learning.

Although cerebral palsy is a lifelong condition, its effects are different from one child to another. Some children may achieve developmental milestones later than their peers, while others require extensive assistance with everyday activities and long-term rehabilitation.

Physiotherapy, occupational therapy, speech and language support, assistive devices and other interventions can help children develop their abilities and participate more fully in daily life, although there is no single treatment that reverses the underlying brain injury.

Behind these medical realities, however, are families whose lives can change dramatically after a child is diagnosed with CP. For parents, particularly mothers who often become the primary caregivers, the diagnosis can bring shock, fear, emotional distress and uncertainty about the child’s future.

The demands of constant care can also affect employment, household income, relationships and personal ambitions, leaving some mothers struggling to balance caregiving with their own need to work and provide for the family.

For Mama Mathias, the moment she first heard that her child had a developmental challenge remains deeply painful.

She was at Muhimbili when a doctor explained that her child had cerebral palsy. At the time, however, she did not even understand what CP meant.

“I did not understand what CP was. The doctor told me that my child would not be like other children and that his development would be slow. He might take longer to sit. When I heard that, I lost all my strength,” she recalls.

She was alone when the news was delivered. Overwhelmed, she sat down and cried. The pain was so intense that medical staff eventually had to help her leave the room.

But returning home did not bring relief. She now had to find a way of explaining the diagnosis to her husband and, eventually, to the wider family.

Instead of receiving the support she needed, she says some relatives blamed her for the child’s condition.

“They said that I was the woman who had brought bad luck to the family and that was why I had given birth to a child with this challenge,” she says.

The words added another layer of pain to an already difficult situation. At times, watching her son struggle became unbearable. She says Mathias would sometimes bite himself, leaving her distressed and asking why her child had to suffer.

“When he bites himself, I ask God why he has to hurt himself. Sometimes I would cry and tell God that if he is suffering so much, perhaps it would be better for Him to take him and let him rest,” she says.

Her experience demonstrates how a child’s disability can affect the emotional wellbeing of the entire family, particularly when caregivers lack information, social support and access to appropriate services.

Mama Mathias later sought help and was advised to take her son to Muhimbili. She stayed there with him for almost a month, hoping that he would receive the treatment he needed.

But eventually, she was advised to return home and continue taking him through exercises. Back home, another struggle awaited her.

She had to provide food for her son, pay rent and meet other household needs while remaining responsible for a child who required constant attention.

“Life became difficult. I am the one who has to give him food, find food and pay the rent. I have survived through the grace of God. Reaching this point has not been through my own strength; it has been through God’s strength,” she says.

Her son’s condition has also restricted her ability to move freely and earn an income. She describes a life of spending long periods indoors with Mathias because she cannot simply leave him unattended.

Yet, despite the hardship, she says she continues to fight for her son.

“I love my child, but what can I do so that he can eat and survive? His time to be taken by God has not yet come. I must fight so that my child can live,” she says.

She has never resorted to begging on the streets. Instead, she tries to find ways of earning a living while ensuring that her son remains safe.

“I have never gone to beg on the streets. I have a bicycle, but I cannot go begging. I still have strength. I have to lock him inside, go and look for something and then return with food. Remember, there is also another child who depends on me as a mother,” she says.

Her story reflects a wider challenge facing many families raising children with disabilities: Caregiving can consume so much time and energy that parents, especially mothers, are forced to put their own economic aspirations on hold.

This is one of the issues that Dorcas HomeCare Initiative is doing through Dorcas Connect to address the issue to all mothers living with children with CP.

Speaking about the organisation’s work, Chief Executive Officer (CEO) of Dorcas HomeCare Initiative, Ms Rehema Semfukwe said that support should not be limited to children living with disabilities, mothers also need opportunities to rebuild their lives.

“We could have remained in Madale, but we said no, that is not possible. There are other mothers in Mbagala, others in the regions, others in Gongo la Mboto and many other places. How will we reach them?” she asks.

For Ms Semfukwe, the vision is to create a support system that recognises both the needs of children and the aspirations of their mothers.

She says many women had dreams before becoming full-time caregivers. Some wanted to become doctors, successful businesswomen, politicians or professionals. But after their children developed challenges requiring constant care, those ambitions sometimes became distant.

“Children have challenges, as we can see, but we do not want their challenges to make us sit down. We want God to lift us,” she says.

The organisation therefore wants to help mothers regain their economic independence while their children receive the care and support they need.

The approach recognises that supporting a child with CP cannot be separated from supporting the person who provides much of that child’s daily care.

For mothers such as Mama Mathias, that support could mean an opportunity to work, start a business, acquire new skills or return to an abandoned career path without compromising the care of their children.

It could also help replace isolation with a sense of community. The journey after a cerebral palsy diagnosis is therefore not only about therapy, hospital visits or developmental milestones.

It is also about helping families understand the condition, challenging stigma and ensuring that caregivers do not lose their own identities and aspirations.

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For mothers who have spent years putting their dreams aside, the question is no longer only how their children can receive better care. It is also whether those mothers can be given another opportunity to build the lives they once imagined.

As Semfukwe puts it, Dorcas Connect’s vision goes beyond helping children. It is about asking every mother what she can still contribute to a world that needs her.

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