Parenting requires a major commitment that goes beyond self. However raising a child with a disability, in a slum where basic amenities are difficult to afford let alone the much-needed medication, will test a parent’s physically and emotionally wellbeing. Sarah experienced this first-hand and it almost broke her spirit. Thanks to that experience she is now running a center that provides the support needed by parents raising children with disabilities. Read her story as narrated by Kendi Gikunda.
The caller ring back tone on Sarah’s phone said, thank you for calling Milton,Milton will pick your call shortly. At first I thought I had made a wrong dial but Sarah picked up. I didn’t ask questions I knew I would get answers in due time but I was taken aback. I stayed confused. It was a rainy Saturday when I met her and she was late, so late. I walked around every inch of Thika Road Mall which was the venue of our meet up. She walked
in panting and very apologetic. “I had to take my first born to the hospital,” she
said. I wanted to know what her challenges were bringing up a child with a disability
in a slum. She began by telling me that Milton is her seventeen-year-old son with
cerebral palsy. She owns the conversation and I listen attentively.
“At his Milton’s sixth-month clinic appointment, the doctors asked me whether he had started therapy. I said no, and was told to bring him after a week to start therapy. I went back home talked to my friends and they said he was fine. I decided to not take him back. I was very naïve so to me my son was okay and needed no therapy. His next clinic would be at nine months. But just before then he fell sick, and had seizures. He became so stiff and we had to rush him to Kenyatta National Hospital where he was diagnosed with severe Meningitis. He turned one at Kenyatta as he was admitted for three months. While he
was being treated for Meningitis, he was diagnosed with cerebral palsy.
My husband came to visit once at the hospital and when I told him of the diagnosis he said he was going to get diapers and some food. He walked out of that clinic and walked out of our lives forever. When I was discharged I went to the home we shared and he had moved
out with everything. I sought solace at my grandmother’s house where I grew up, told her that my husband had left and that I had no one else to turn to. My father lived with another family in Mombasa and so my grandmother asked me to make plans to join my father. I had only met him once when I was very young. When my family realized I was going nowhere they held a meeting and asked me to give away Milton to some Catholic
nuns in the area. I was struggling to feed my kids so I thought that was a great idea. I toyed with it for a while then Milton fell sick again, so I decided I would get him well then I would give him away. When I returned to KNH with him he was admitted in ICU for almost
a month. At the time of discharge, the medical bill was about Ksh 127,000. I didn’t have a penny to my name, not even Ksh 20 to take the bus to town.
It occurred to me could I abandon Milton at KNH. I called everyone I knew to ask for money, but didn’t get any. It would have been easy to walk away from Milton. Other than my family, no one else would know what had happened to him. I left the hospital during the lunch hour visiting period, went home and told my family that I had abandoned Milton. They gave me two thousand shillings to go to Mombasa. I booked a bus and waited to board. My father lived there so my plan was to go visit him and see if I could start life afresh there.
To be honest, I wasn’t in my right frame of mind. When it was time to board the bus I couldn’t move. My legs froze, I started shaking and was so disturbed. I thought of how lonely Milton was, how hard life would be for him, how unloved he would be and wondered whether he would even survive. I realized I was being selfish and couldn’t live without my son and with the guilt of having abandoned him. I took the next bus to KNH and got
there at 10pm. My son had been moved to the abandoned children’s ward. I lied to the nurses that my daughter got sick and since I had no one to take her to hospital I left Milton shortly in order to take my daughter to hospital as I knew Milton was safe. I just got a little late. All this time my daughter oscillated between people’s homes every day and night. I knew I had to go back home but what would I pay the bill with? I had perfected the art of walking away from things so I also thought of walking away from the bill, but I knew I would be back because of Milton’s condition. So I talked to a social worker about my plight
and was discharged with the promise to pay. I ask her what happened the bill.
“To date I have never paid it. I told them I couldn’t afford to,” she says as her voice lingers wondering if they might come asking for their money fifteen years later. “When I got home, I was homeless. Luckily a friend had just got married and she left me her house albeit short-lived as she came back later and asked for her stuff and stated that I would have to
be paying rent. I was left in an empty house but was grateful I had a roof over our heads. Life was tough. I would pick Ugali from the Dandora dumpsite and peel away the top, recook it and fry some greens and make a meal for me and my kids. At least back at the hospital, I would have food. I actually even had extra since those who got visitors would forgo hospital food which I would then eat. At one time when my son was admitted at KNH, I went to the private ward and ran errands for the patients in the private wing and in return they would pay me cash or give me food.
My house being empty, I walked to Dandora dump site where I picked out useful fabric pieces, washed them and spread them on the floor where my kids and I would sleep. I took on casual jobs to and whenever I was working far from home during the day I would send my daughter to play with the neighbor’s kids where she would get fed when they ate. My daily wages was Ksh150 a day, which would cover for Milton’s medicine and food. Life was hard. I was exhausted, broken and nothing was worth living for anymore.
The turning point
I met James, the father of my last born when I was about to end it all. I came up with a plan to take the life of my children and then commit suicide. That day I had made Ksh 300, it was a good a good day but I was in the depths of despair. I bought three bottles of insecticide used to kill bedbugs. As I sat planning on which child to give the insecticide to
first, I had mental images of how my kids would seize and splatter around their limbs before life ebbed out of them. It gave me joy. Joy that they would finally rest, then I would follow them a few seconds later. At this point I didn’t even pray, what would I pray for, whom would I pray to? The God that gave me a child living with disability? The God that made my family disown me? The one that let my husband leave me? The one that would at times let us sleep hungry? Which one?
Whenever James walked past my house, he would always call me just to say hi, and check on us. That used to piss me off because he only brought greetings and nothing more but he never stopped. Maybe it’s because I didn’t tell him that he pissed me off. On this particular day when he called me , I didn’t answer. But he wouldn’t give up and he went
on calling me several times. When I didn’t answer he kicked my door open and found me in my stupor staring at my kids. He sat on the stool in front of me. The pesticide was under the stool and when he kicked open the door, it poured. When I realized it had poured
I cried and inconsolable. He didn’t leave because he didn’t know what to do with a crying woman. That pesticide had a strong odor and when he smelt it he casually asked if I was trying to get rid of bedbugs. I snapped at him.
How rich would I be to have fed my children, myself, paid rent and still have money left over to buy pesticide to kill bedbugs? I told him how he had ruined my plan. That night he didn’t leave. We made a pact that he would pay my rent and feed my children until I could get myself together and anytime I needed to step out he would take care of Milton.
Life took a turn. I was able to achieve so much as I would do more casual work. He loved to babysit and play with Milton. What more could I have asked for.
In 2006 as James was listening to Kameme FM with the late Njoki wa Ndegwa as the host he had a guest known as Mr Wanjama who was living with a disability. James told me about
him in the evening and the next day we went looking for him at Kameme FM who were gracious enough to introduce us to him. I explained to him that I wanted to take Milton to a children’s home that would take care of him but would allow me to visit him. He talked me out of it and instead asked me to go look for a school that I would take him to and give him the feedback. Mr Wanjama would cater for everything. As I left he gave me Ksh 1,000 and when I touched it I thought it was fake. It had been years since I touched a one thousand shillings note so I didn’t even know how it felt anymore. I thought it was too crisp, too new. As I looked at the note it occurred to me that money would solve just my problem but what
about everyone else with a child like Milton? I went home and told James that I didn’t want to take Milton to a school, instead I wanted to start a support group for parents with kids living with a disability because Milton’s education would cost between Ksh 20,000 to 30,000 for one term. For me that was too much and I knew he would never change much.
I thought about all the parents with children living with disabilities that I knew of and began to assemble them. We started meeting regularly and as we shared our experiences I felt that my burden was lighter. One day I asked these mothers where they left their children while they went to work or during our meetings as I was the only person who would have Milton on my back.
They said they would lock their kids in the house and I asked them to be tag along their kids in the subsequent meetings. Eventually ,I asked them to bring their kids to my house as they go about their chores as long as they bring food along. I asked for no pay. James
would pay all our bills so I would have time to take care of the kids. Over time, the community around started donating stuff. We started with four kids and in less than two months we grew to twenty kids.
Hope at last…
There is an organization called FHRC that works in Korogocho. One day Mrs Osnat, the wife to the then ambassador of Israel to Kenya Jacob Keida passed by FHRC offices and they brought her to our place as part of their CSR. She walked into our cramped single room
that hosted about 20 kids living with disabilities and broke down. She asked us what we would like them to help us with in the long term. With her help and FHRC, we secured a piece of land and they built us a center; Light and Hope Centre for Children with Disabilities.
It was inaugurated in 2009. That year during the independence day of Israel we had celebrations held at the center. I was speechless, I couldn’t thank them enough.
From around 4 children we currently have 127 children living with disabilities in the center. The youngest is two years and the oldest is thirty three years. We take care of kids living with all kind of disabilities and of all ages, no one is turned way and we survive by the grace of God. We depend on well-wishers and pay whatever bills we can. The kids do not pay anything and we offer them meals each day. Their parents can now go to work and I too can also work. Milton is turning eighteen this year and it is still hard but I don’t question God anymore. I tell myself this is God’s way of helping my community through Milton. If I didn’t have him the center wouldn’t exist. I have since learned to look at the world through a colored
As we are about to end this interview, Sarah talks nostalgically of James as she thanks him for saving her life, her children’s lives and giving her a last born. I ask her why she is talking about him in the past. “I let him go live a better life with someone more deserving,
but he still helps me run the center and we co-parent my last born son together,”