By Vanessa Obioha
The Cerebral Palsy Centre at Bode Thomas Street in Surelere, Lagos, looks like any other residential home. In contrast to its serene exterior, the interior is a beehive of activity. No signpost betrays the activities behind its walls. Yet, inside is a home filled with love and laughter for children suffering from cerebral palsy. A compassionate woman had taken it upon her to care for these less privileged children who are unaware of their fate; children who are yet to come to terms with the harsh reality Fate had thrown to them. To them, the cerebral palsy home is their safe haven. They are content and happy with their lifestyle at the moment because the beautiful separate mother, Ms Nonyelum Nweke showers them with so much love and care that they are hardly aware of their circumstance.
Ms Nweke is busy preparing their lunch as I arrived. She pleads with me to be patient a bit because it is almost closing time. Bemused, I watch her feed the children with the help of her four workers. Some of the kids cannot hold their heads still, some are drooling, others are simply being capricious.
But Ms Nweke remains undaunted. Lovingly, she sings to them in a bid to coax them to eat their meals. And do they love her! She teases each one of them, pantomime’s a phone call to their parents. They coo with delight and readily accede to her request. As impaired as they are in their speech, they try hard to express their thoughts through their playful replies.
The scenario before me is so touching that I can’t help dabbing my eyes. How one woman can wholly devote her life and time to care for these vulnerable kids is an outstanding service to mankind.
Cerebral Palsy (CP) is a movement disorder caused by damage to the brain before, during or after birth. It also affects the nervous system functions such as body movement. Kids with cerebral palsy are usually impaired with speech and communication gestures. Cerebral palsy is of different types such as spastic, dyskinetic, ataxic, athetoid, among others. It is mostly caused by injuries or abnormality in the brain and usually occurs when the baby is growing in the womb. It can also happen at any time during the first two years of life. There is no permanent cure to this disorder but with constant therapy, a child can overcome some of the hindrances of this disorder. It can also be mild or severe.
How it all started
From catering to the stomachs, Ms Nweke found herself catering for children with disability. Her life has not been a bed of roses. Ms Nweke didn’t wake up one morning and decided to build a Cerebral Palsy Centre, neither was she a very wealthy woman.
Circumstances that could have made her give up on life ironically made her embrace life more. She was at that period of her life when all that mattered was the cry of a child in her bosom, a child she could nurture and call her own. Unfortunately, biology was not operating on the same wavelength as her. Out of desperation, she adopted a female child only to realise five months later that her adopted child has cerebral palsy.
“I took her when there was a vacuum in my life,” she recalls. “I needed a child. You know there is a phase for some women when you need to fill that vacuum to nurture a child and when you can’t get yours biologically, you go for the next alternative. Going by the way adoption is done in this country; it involves a lot of secrecy. I wasn’t told who the parents were neither did I bother to ask of the history of the child. All I know is that I wanted a child and I was given one.”
Her joy of holding a baby in her arms to nurture was short-lived when she noticed five months later that her child wasn’t developing as other kids.
“I noticed she couldn’t keep her head still, she was drooling and was having seizures. I was then unaware of this medical condition but was concerned all the same. I took her to the hospital and the doctor revealed to me that she had cerebral palsy after carrying out a diagnosis on her.”
She recounted how the doctor had been angry when she confided in him that the child was adopted and she was shielded from the medical history of the child. At that point, the logical thing for Ms Nweke to do was to return the child even when the hospital asked her to do so and get a normal child in return, she couldn’t bring herself to do that. “Naturally I was bitter, angry, shocked,” she admitted. “All I wanted was a baby and I was given a baby...but I wasn’t expecting a child with CP.”
The tough decision
The first thing she did was to call her younger sister who was a pediatrician to explain to her what the sickness was all about. Then she went online to carry out research on the disorder.
If Nweke had returned the child to the hospital, she would not be guilty of anything but to her it was not an option. She was advised by many to return the child. Others told her that it was a demonic attack. Yet, it was difficult for her to abandon the poor baby whom she had grown to love and nurture as one from her loins.
“When my baby was diagnosed of CP, everybody wanted me to take her back to the hospital. They asked me to consider the future since it was a lifetime problem. But I couldn’t. I had her when there was this vacuum in my life. I had so much love that I wanted to give and she came and fulfilled that for me. Am I going to abandon her because of her disability? That would be criminal if you ask me. When I asked for a child I didn’t ask for a child without CP. I asked for a child and I was given a child so I should take care of the child irrespective of her shortcomings. As difficult as it is, I had to make that decision. I was going to keep my baby.”
Despite the harsh separation from her husband with no one to help her out in raising such a child, Ms Nweke’s heart went out to the poor kid and she decided to care for the child even with the knowledge that it was going to be a lifetime devotion and the child would never be like other kids. She was proud of her child and was willing to sacrifice all for her. Out of this undying love for the child sprang up this sacrificial service to mankind.
By the time Zimuzo (Igbo for God show me the way) Nweke was a year old, Ms Nweke began a therapy session for her but she couldn’t keep up the pace as she had to manage her restaurant. It was difficult for her to balance her tight schedule with catering for the child. She thought of keeping her in a daycare centre but no regular daycare centre would accept her. When she finally found one, the stress of going to pick her child from the centre by 1pm and return to her business was a bumpy ride for her. It dawned on her that the road to Paradise was not an easy one. Gradually, she began to look for ways to ease her burden. She researched on the internet on how to treat and care for children living with CP. Whenever she visited the hospital, she tried to talk to other parents who were in similar circumstance to share their experiences but she noticed that they were too embarrassed to talk about their plight.
“People are a bit secretive about this but I don’t blame them. We are a religious society; we still believe that children like these are demonic. People are embarrassed to come out and say that they have children like this and all this are centered on lack of knowledge. And usually you are afraid of what you don’t know.”
In 2009, Nweke was already entertaining the idea of owning a training centre for kids with cerebral palsy. By then, she had studied the disorder very well and understood that this kind of disability required a lot of devotion from the parents and a change in lifestyle. She observed that one of the challenges of some parents were the imbalance of catering for such physically challenged children and attending to other needs.
“I didn’t just want a home for children with disabilities. I wanted a centre where I can meet with other parents who are in the same dilemma so we can put heads together and find a way to help our kids. We started out by having a session every week. But the major challenge was how these parents can go to work and still attend to the needs of these children.”
In a bid to help other parents who were going through the same ordeal of caring for physically challenged children, Ms Nweke converted her restaurant to a training centre for kids with cerebral palsy by April 2010.
“I was touched by the plight of these parents who were trying their best to balance their busy schedule with catering for the needs of such vulnerable children. Kids with cerebral palsy call for a total change in lifestyle and not everyone can adapt to this. You cannot even leave them with a nanny because a nanny can get angry and tired of dealing with such a child. Some cannot even afford a therapist. All these I put into consideration and decided to set up this centre.”
One of the challenges she encountered was getting parents to bring their children to her to take care of. Some were sceptical at first but gradually, they entrusted their children to her care. Another major challenge she encountered was the level of ignorance and stigma some of these parents faced. According to her, some parents were yet to grasp the bitter truth that the children with such a disability were not victims of demonic attacks from their enemies.
“I remembered the way people advised me to take my child to one centre or the other,” she says. “Even at church, as a Catholic, when we are asked to shake hands, people won’t shake my hand because of my child, only for them to meet me at the end of the service and advise me to go to one strong pastor or church for deliverance. We call ourselves Christians but we are still traditionally-minded about some things. We believe that as a Christian, we are not supposed to have such a child. That it is a demonic attack, and all these is because of ignorance. People are not enlightened on this sickness. I have prayed so much and at a point I just had to accept my fate. Most times, people spend time asking ‘why’ instead of ‘what can I do’. This is the mentality of some parents out there.”
Besides helping these working parents to take care of their kids, Ms Nweke also counsels them and never ceases to hammer on the importance of bonding with such children.
“You know the eye doesn’t like the ugly. This is why I encourage the parents, and their siblings to spend time with the kids. If they don’t bring their siblings around to spend time with them, at a point, they will become strangers. You don’t need the eye to love these children, you need the heart. I want people to visit your home and play with these children like they would the normal ones. Taking them to a home will only help to build that gap between the parent and the child. I encourage the siblings to take care of them. I counsel them and I want them to learn how to love these kids, to take them as one of their own. To boldly show them off to their friends.”
Ms Nweke runs the place for free. How she has been able to sustain the place? She jokingly replies: “I beg, before you leave here, you will drop something for me.” On a serious note, she added. “I don’t need a bag of rice, I want to see improvement. I want people to come back and see the changes in these children. The only financial support I need is to pay my staff, pay the therapist and others but most importantly, I want to see these children happy. We are to prepare a place for these children in the future. We don’t have to wait for the government to do everything for us. People talk about corporate social responsibility, I think this is my own individual social responsibility to the community. If not for my child, I wouldn’t have known what CP is. Unfortunately, she will not be that developed as I want her to be but we can start from somewhere.”
The centre currently caters for 13 children aged between 2 and 6 years. It opens by 9am and closes by 4pm weekdays except on Fridays which has a 2pm closing time. Even though Ms Nweke runs the centre for free, she runs the place with an iron hand.
“I only allow 30 minutes grace, once it’s past 9.30 am, don’t bother bringing your kids. You know how people can abuse things that are gotten on a platter of gold. If your child is absent, I would need a genuine reason.”
At exactly 2pm, I noticed a few parents coming to the centre to pick up their wards. I noticed also the appreciative glances they exchanged with Nweke. The children likewise were happy to see their parents . It was also inspiring to see some siblings enter the centre happily to take their younger ones home.
Always on the look out for new ways to care for these children, Nweke travels abroad to learn techniques on how to improve the health status of these children. She engages them in different therapy such as speech and body movement. I observed chairs with straps and braces and crutches to help the kids develop their muscle movement.
When she is not at the centre, Nweke is at home reading or writing, or at the church singing with her angelic voice which her daughter delights in when she plays back the recording for her.
Despite her magnimity, the Founder of the CP Centre believes there is a lot yet ahead. Her current effort is not one she likes to sound a trumpet about. She feels she is contributing her quota of social responsibility to her community. Nweke, no doubt is an embodiment of love.
As I write this, Zimuzo’s laughter resounds in my head. I recall Nweke tickling her until she cooed with laughter. Indeed, Zimuzo has become the light of her life.