In 2000, God blessed me with a son: Derrick! Two days after Derrick's birth, his skin turned yellow. We took him to the hospital and he tested positive for Malaria. We were admitted in the hospital for three days, one month later, Derrick was all good. But as time elapsed, my husband and I started realizing that Derrick wasn't growing as a normal child. Derrick had poor head control, he was very floppy, his eyes were not stable, and he cried all the time. I took Derrick to see a peadiatrition.
The peadiatrition told us that Derrick had Meningitis, which had infected him through the spinal cord to the brain and it damaged the brain. From this point Derrick started getting convulsions on and off, and developed a breathing problem. We stayed in the hospital for two months, because Derrick needed to be on oxygen. This didn't stop, we frequently showed up in the hospital time after time. It was too hard for the life of Derrick, as well my husband and me. It was very hard for Derrick’s dad to accept that Derrick had got multiple disability. We tried different hospitals for more information.
After 2 years of suffering, we came to realize that Derrick had got multiple disability. Many of our friends used to tell us that he was bewitched! We didn't give up on trying to find the right medications for Derrick, occuring in hospitals for Derrick's exercises. After all this, we came to realize that we were not the only parents with such a child. In this situation, lots and lots of friends and relatives gave up on us. My husband’s side, it was seen as a curse for me to have given birth to a disabled child. My husband didn’t give up on me, we stayed strong as a family, we both continued to struggle.
In 2004 one of the organizations (Non Governmental) working with children with multiple disability started in our community. I took Derrick for the exercises. Doing this for three months gave me an overview of what other people were going through. This charity organization (Spring of Hope) requested me to join and work with them (after noticing the experience I had and the love for the disabled child)!They wanted me to work in the community visiting parents who had children with disabilities, encouraging and teaching them on how to do exercises with their children. I took the offer!
When I started working in the community I found that many children with disabilities were abandoned and left in the villages with old grannies, because they have disabilities on their body (parents don’t want to be seen with such children in the public, so they give them to the old grannies in the villages to take care of them). Most of the children in the community were full of bed sours, very malnourished; they could even lock the children inside the house to die of hunger. It was really hard for me to work with the grandmothers with such a load children, because they could have much to do with the disabled kids considering the entire work load they had to get done and being that they were old people (aged).
This is how I started carrying the burden according to what I had seen in the village. I started thinking so hard and praying to God about this entire situation of taking care of such children in the community. When I started praying and thinking so hard about helping other children, I thought so hard about taking care of other child and thinking how hard it would be to involve other kids. Because it was so had for my own child. I prayed about it several times, but I kept on denying about it.
In 2006 while I was praying about it, thinking of doing it, finding it hard to work with more than one child, in 2006 I had an accident while on my way to Kampala and I got a spinal cord fracture and pelvic fracture. I was admitted at Jinja main hospital. The doctors told me that I wouldn't be able to walk anymore and that I would use a wheelchair, but I could not believe this. For a long time I came to realize that I was being disobedient to God and didn't answer His call. I started again praying to go God, askin Him to heal me, so that I could start taking care of the disabled children. I realized what it was going through this, to be disabled myself, and how the disabled children feel. When I prayed to God, after six months I was able to move on walls and using crutches.
I shared it with one of my friends who were meeting my expenses in the hospital called Karina. I told her what God was telling me to do and I was just praying for the break through. She told me that she was going to visit with her family from New Zealand. Which finally did happen, in 2007 she came with her family. I took them around to see the children whom God was telling me to take care of and I was really in bad condition, there were five disabled children. When they saw these kids they were so very touched, as a result they contributed money for the house rent, bought mattresses, bed sheets, as a family and that is how I started Home of Hope in 2007 July with Five children plus my son Derrick the sixth one.
Now as I speak, I am taking care of almost 100 children who are abandoned and neglected. We do community work still, to teach parents how to take of their children, give them free medications, do home visits, do outreaches and this has really helped parents to reduce on a abandoning their children. My future plan is to set up income generating activities to teach them some skills e.g. tailoring. I would also like to open up a school for the special need children and empower them, support the children and their mothers, because I know from experience that their husbands keep on neglecting and abandoning them, because of giving birth to a child with disabilities.
~Edith Lukabwe
