When raising a kid demands more than courage

What is it like to be the mother of a child who constantly needs special care and attention? ROSE KWAMBOKA talks to three mothers who say being in such a situation requires love, patience, time, money and sacrifice.

Parenting is hard work, but for mothers raising children with special needs, the hard work is doubled, sometimes even tripled. The specific challenges these children face shatter all the "a child should be" ideologies that most parents idolise and build their lives around.

Njeri's story

For Njeri Kahiu Rodgers, parenting has been a painful journey. The only place she thought she would obtain peace and comfort – the church – turned out to be the worst place for her and her children.

"Take that manner-less kid outside. God hates nuisance!" Njeri remembers the heartbreaking words of the church elder who screamed at her without batting an eyelid.

"The church service came to a standstill as an usher walked briskly towards us to escort us out. My efforts to explain our predicament fell on deaf ears as the congregation looked at us in shock; the mothers throwing accusing looks at us as they exchanged knowing glances," she recalls the elder's rage and they were thrown out.

"I shamefully bundled my kids – Sandra and Tanya – to the van we had hired to ride to church and went back home, wearing a sullen face, struggling to fight back tears," she speaks of the last time she was in that church, or any other for that matter. "I vowed to one day put up a special home with a chapel for special kids."

Tanya – the younger of the two sisters – is autistic. On that day in church she had grabbed another child's feeding bottle and gulped down its contents. When the child cried, demanding her milk back, Tanya threw a tantrum of her own, giving the church elder enough reason to order the family out of the sanctuary.

"Every time someone asks me if I go to church, I cannot stop hot tears running down my cheeks," Njeri says.

Her worry was in the physical stature of her daughter, Tanya. "When Tanya was born, her head was the size of an adult's, her legs as thin as an adult's finger. I would measure her head daily to see if it had reached the required head diameter of a human being," she says of her obsession.

As Tanya grew, she had to deal with the ignorant comments from women trying to school her on how to teach her child "to behave" as Tanya sat or lay prostrate on the street or supermarket floor, screaming and scattering everything within her reach.

"I would shudder as tears blinded my eyes every time someone, more so a woman, would make such a comment," she says. "I no longer try to explain myself. I have learned to develop a thick skin and just ignore them.

Many a times, people would ask me what sin I committed to deserve a special needs child especially given that I am physically challenged," she says. Others have even shamelessly hinted that she had been cursed and would not associate with her. "I was judged harshly. I lost many friends as a result. But my husband remained my one true support system.

Eline's story

Nathaniel Ngige Mburu was diagnosed with Complex Congenital Heart Disease at six months and with it came five other heart complications.

Prior to the diagnosis, the doctors had treated him for asthma, whose medication worsened his heart condition. His worsening condition worried the mother so much that she sank into depression.

"I was emotionally drained and stressed out. I could barely sleep, wondering what would happen to my son. I blamed myself and questioned God," admits 33-year-old Eline Maswai Ngige, Nathaniel's mother.

She had sunk so deep into despair; she had to be admitted in hospital for two weeks. She was emotionally unstable, and underwent counselling.

"To date, I have my low moments. But talking to my sister helps a great deal. My relationship with God is better than it has ever been. I now know he is the giver of life. My husband has been very supportive, and so have been my friends and family.

Mama Mikel's story

When he was almost two Mikel Amin Lando was diagnosed with Hyper Neuroblastoma – a cancer that affects the nervous system.

Before the diagnosis, the disease had appeared to be a simple manageable condition but he was constantly in hospital. Months of no treatment led to the cancer spreading from her liver to other parts of her body; even deforming her head and eyes. In September 2014, she was admitted in hospital.

This whole time, people offered unsolicited advice to Mikel Lando's mother. There were plenty of unwelcome opinions. When the comments got to her husband, he advised that Mikel be taken for traditional spiritual cleansing in the village churches.

His argument was that the disease could only be associated with a curse or demon and only a spiritual cleanser could exorcise the evil spirit.

This suggestion was met with stern objection from Mama Mikel who preferred to seek modern medical care. Angered by Mama Mikel's decision, Mikel's father abandoned his family and has not been heard of ever since.

Expenses

"The entire burden is now on me. I took a four-month leave from work to fly to India for his treatment. The four months have now elapsed. My employer only agreed to extend my leave on condition that I will not be paid for the duration of my absence from work," she says.

She is not sure how long she will stay in India. The bill (Sh4, 000 per night) keeps going up as she waits for her family back home to raise Sh1.4million for Mikel's pending bone marrow transplant. But he has to complete the remaining three (out of six) chemotherapy sessions that cost Sh200, 000 each before the transplant.

As Mikel's mother waits, Nathaniel's mother, Eline, through her supportive friends and family were able to raise money and travelled to India in September, 2015 to have the FONTAN Completion Surgery performed on Nathaniel.

However, the surgery could not proceed. "Due to high lung pressures and with the left side of his heart not working, it would not be possible to go on with the surgery because he would not survive it. As much as he needs the surgery, he cannot have it".

But Nathaniel has to undergo the heart transplant soon if he is to survive the next five years as advised by the doctors. The transplant, which is scheduled for early next year is dependent on availability of funds.

It costs Sh10million excluding the cost for the mandatory 18-day bed and ICU stay at the hospital and the 20 to 25 post-discharge stay in India.

Other expenses

Besides the medical burden, finding an affordable school that can accommodate special needs children is a challenging task. In addition, finding a reliable caregiver for a special child is not easy.

For example, Tanya's mother, Njeri, had to hire an extra house help who is constantly on the lookout for movements that could injure her such as eye-poking, skin-picking, hand-biting and head-banging.

"One minute, she could be friendly and happy, hugging and chit chatting, singing and dancing, sitting peacefully eating dinner or watching TV, then her dad says a single word or sneezes and hell breaks loose; she throws herself on the floor and rolls, screams and wails," Njeri explains that such incidents have only been resolved by her father leaving the room.

Lifestyle change

"Diet intervention has helped reduce Tanya's hyperactivity. To that effect, we have learned to do without so much including bread, sausages, sugar, millet, processed flour, and some fruits like apples and bananas.

If we feel the need to eat bananas, for example, we have to do it in the car after we have dropped her in school," says Njeri, who is grateful that the lifestyle change has helped the family to live healthier.

Eline had to do away with her carpets, and make her house as allergen-free as she possibly could. She cannot engage her son in any intense activities like sports or running.

Excitement or any other thing that would quicken his heart beat is out of the question.