My children’s smiles give me strength to keep me going

Keziah Wambui, 34, cannot recall the last time she paid anyone a social call. As a mother of four children — three with special needs — parenting has kept her fully occupied in their home in Mutondu village, Ndundori in Nakuru County. 

Today, she goes about her chores enthusiastically giving each child affectionate care. But this was not always the case.

“I became a mother at a very young and as fate could have it, my first child was born disabled. It was a stressful moment and my self-esteem dipped. I felt like the whole world was condemning me. I felt cursed.”

For three years, Keziah lived in denial as life became hazy. She could barely tell the difference between day and night. She withdrew from the public and only left the house when it was time to go to the clinic. When out, she imagined everyone was staring at her and her “strange” baby.

Thankfully, Keziah’s husband came to her rescue when she was on the brink of losing her mind due to anxiety and sleep deprivation.

“I am grateful for my late husband’s support and encouraged. He always pleased with me to be strong for the sake of our son. When things took a turn for the worse he helped me seek counselling.”

 Shortly after, Keziah conceived her second child. By this time, she had made peace with her first’s child condition. She was optimistic that the second birth would go smoothly.

“I was very careful during my pregnancy to do everything right. I hoped the child wouldn’t be disabled if only to silence the negative thoughts in my head.”

However, this was not to be and her second child was born with disability.

Her three sons, Bote Kamau, 16, Evans Kamau, 13 and Peter Kamau, 8 suffer from cerebral palsy. They are confined to the wheelchair and depend on their mother fully.

“My children have employed me although I don’t earn a salary like other employees out there. I work for them with so much love. They are my assets, my blessings and my life. Every day I wake up, all my energy and mind is always devoted to them.”

Keziah admits the sickness has made parenting a full-time job for her with the only breaks being when they are asleep.

“It is now 16 years since I became a mother. Although my journey has been challenging, I have learnt how to cope and care for my children. I feed and clean them up. I help them get to bed and ensure they get enough sunlight when the weather allows. I also massage their bodied to ensure they don’t suffer muscle cramps.”

She notes the condition has affected the children as well as they are not able to enjoy most of the activities carried out by their age mates.

“They cannot play with their friends instead they have to be strapped in their wheelchairs all day long.”

Early signs

Keziah’s first born son became unresponsive at the age of six months after she gave birth to him in 2004. The baby, she says, could not sit and remained immobile.

“All his age mates were doing well, even crawling. I got concerned for my child and the journey to seek medical answers began,” she recalls.

At first, doctors could not establish the baby’s problem since he was growing well. Sometimes they even asked me to give him more exercises like training her to sit down at an angle of 90 degrees to help his back stabilize.

She was also advised to use a plastic jerrican as a roller where she would lay her baby by the stomach and make several rolls to flex his neck and back muscles.

“I did all that just to have him respond but there was no change,” she says.

Later, a doctor diagnosed him with Cerebral Palsy, which she said she knew nothing about.

“The doctors asked us to take the baby for therapy which would be done on a daily basis. I was hopeful that things would get better after seeing how determined doctors and nurses were to attend to the baby. I did not know that it would last for a lifetime or that two other children would suffer in the same way.”

Stigma from society

Although Keziah knows only too well the stigma attached with disability, she cautions parents from hiding their children pointing this can add to the trauma already being experienced by the child.

“We were shunned especially after the arrival of the second and third born. Some of our relatives abandoned us claiming I was bewitched. They could not come to our home even after we sent out numerous invites.”

 Bolder critics openly encouraged her husband to marry another woman, and this hurt Keziah deeply. During these low moments, she realised her children were all she had and clung to them with much devotion and care.

“I decided not to concentrate on the negative things as they would suck up the energy I needed to care for the children. My interactions were limited to members of the family who supported us from both my side and that of my husband. I also found strength in the church.”

For parents who have children with special needs, Keziah encourage them to love and care for the children because as the bible states, children are a precious gift from God.

Daily routine

 She normally wakes up at 7am and prepares tea or porridge for breakfast which the children take at 7:30am. Afterwards she bathes, massages and clean each child.

 “I have to massage their bodies to help increase or reduce muscle tone, encourage muscle flexibility, improve digestion and relieve constipation. That is what the doctors advised.”

Massage also reduces spasticity, encourages motor function and increases range of motion in joints for children with cerebral palsy.

They used to receive physiotherapy which cost Sh500 per child but it soon became too expensive. Currently, Keziah is struggling to buy diapers and food for her family, a burden that has greatly increased since the demise of her husband.

“I often depend on well-wishers and I can tell you for sure that God has been faithful. Sometimes it gets tough, but God comes through for us. Since my husband died, there are countless days that we have gone to bed with no food. Sometimes we have, sometimes we do not. Whatever the day brings, we go to bed hoping for better days.”

She has grown a kitchen garden and a few chickens that provide some of the food they consume.

Losing husband

Peter Mwangi, Keziah’s beloved husband, died in December last year after battling throat cancer.

“Although he did not have a stable job, he was my support system. He worked tirelessly taking up one manual job after another to provide for us. We never lacked. Sometimes I wonder why he had to leave, but God knows why I had to endure the pain of losing him. “I remember how my husband used to encourage me not to tire but take care of the children with love. He would tell me; ‘Mama Peter, God loves our children so much and he has given us an opportunity to be their parents. Let us take care of them and He will one day remember them.”

“Every time he would come back from work, I got a chance to relax as he took over the children’s remaining duties like feeding them super and taking them to bed. He never complained even though I knew he was worn out after hawking foodstuffs all day at the bus stops.”

Great reward

Despite all the curveballs life has thrown her, Keziah remains resilient and cheerful. Her infectious laughter radiates warmth throughout the house and her children bask in this joy.

“The most that they can do is offer me a smile and it satisfies me. Once in a while when they are uncomfortable, they cry. But most of the time they are cheerful and fill the house with laughter.”

According to the Centres for Disease Control, CDC, cerebral palsy, is a disorder that affect a person’s ability to move and maintain balance and posture. The condition is the most common motor disability in childhood and it is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control the muscles.

A person with severe form of this disease may be unable walk and require lifelong care.

A senior medical officer at Karen hospital Stanley Wahome, describes Cerebral palsy can be caused by problems with premature birth and also when the baby fails to get enough blood, oxygen, or other nutrients before or during birth.

“Symptoms include exaggerated reflexes, floppy or rigid limbs and involuntary motions. These may appear by early childhood cycle,” he says.

Long-term treatment includes physical and other therapies, drugs and sometimes surgery.

The doctor says although some children may experience problems with hearing, controlling their breathing and coordinating the muscle movements required for speaking, intelligence is rarely affected in these forms of cerebral palsy.

Ataxic Cerebral Palsy affects balance and depth perception.

“There are four major types of cerebral palsy which are; spastic, athetoid, ataxic and mixed type,” he says adding that the type of movement issues seen in a person with CP depends on how severely a brain injury has impacted muscle tone.

Keziah’s sons were diagnosed with the spastic type which is the most common according to experts.

When one suffers from spastic Cerebral Palsy, Dr Wahome says pain is experienced because it causes functional problems that can lead to contractures and cartilage degeneration (a decrease in passive range of motion in joints).

Also, spastic CP is linked to a chronic shortening and misalignment of muscles that require surgical and non- surgical interventions to correct.

The World Health Organisation (WHO) points out that, across the world, out of every 1000 live births, between two and three babies will suffer from cerebral palsy.

The approach to the assessment and management of children and youth with CP may depend to a considerable extent on the frameworks used to conceptualize diseases and disorders.

However, paralysis for a child with CP, WHO notes that it is not just a problem of movement and perception, but also interest and participation.

Rehabilitation and therapy must be directed towards promoting a balanced interaction between the individual and their physical and social environment.

Keziah says her children and their condition has taught her true love of a parent to their children. She has learnt to be patient with God and to take every single day as a blessing.

“At first, I would question God and ask Him why he chose to give me these children I would ask Him what His intentions were but the more I asked the more I faded away in faith until I learned to accept.”

Still her faith remains intact concerning the recovery of her three sons. For now, she hopes to afford therapy and proper education that will help the three boys have dreams and pursue them.

If Keziah could have anything in the world to ask for, she says she would ask God that her children live happily and enjoy good health for the rest of their lives.

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