MONDAY 11 MARCH 2019
Power was off and fortunately my head torch was handy and useful until the sun rose. An inconvenience more than a problem! I caught up on my notes and then I was unexpectedly visited by a larger than usual spider which scurried across my lap.
I was ready for my first day of home visits and all was set when Joseph ambled to the porch. I have a soft spot for old Joseph as I know his life is hard and that he struggles to survive. He was selling his home-made brooms, a few branches tied together with anything he could find. He must realise that I have a good supply of these from previous visits but another could join the pile and I gave him money which he could use to buy new flip flops made from old tyres. He showed me those he was wearing and they were through at both heels. He left with a lighter step and a smile having also been given salt and soap.
The Land Cruiser arrived and it was good to be in “old faithful” (well, most of the time!) It had been repaired except for the brakes so we had to drive slowly. We called to collect the spare wheel which had not been repaired so fingers crossed on both counts! Off to Kanyum with Peter and Harriet to meet up with Peter, our mobiliser for that area. Beforehand, I needed to call in at the bank to speak to the bank manager about the appropriate account I would need for when we are registered as a charity. Yes, there is still a human being sitting behind a desk which makes such a difference.
Then to “work”! Peter, mobiliser, finds the children with disabilities and today he had arranged for Rose, a 2 year old with cerebral palsy and enlarged rib cage, and Hellen Rose, 3 years, also with CP and being cared for by her grandmother, to be in his compound ready for us to assess. Hellen Rose’ mother had left taking a second CP child and one other with her saying she “cannot produce children like this with this man.” We met this family last year and had given two goats so today they did not receive the usual goat as an income generating project this time. One goat had produced twins. Little Hellen Rose was sick so we gave the mother 50,000/= so that she could take the child to the nearby Health Centre.
On to the next home of the Reverend who was caring for his brother’s family since both the parents died. Emma was 27 years old and was normal until he was 20 when symptoms of a progressive disease became apparent. He had completed Primary Seven. We found him sitting on the floor inside the house in a contorted fashion against the brick wall and writhing with gross involuntary movements. His elbows were ulcerated and covered in flies with hitting the rough brick wall. They had never sought medical help for him and there had been no previous cases within the family. Outside the back door was his wheelchair with two wheels only and the seat worn into a large hole like a toilet. I could not believe that this was still usable and, being a doubting Thomas, I asked to see how they managed. With two people, they raised his rigid body and sat him in the chair, leant it back on the two large wheels and set off with the necessary momentum to get going over the uneven murram. We needed a plan to improve Emma’s situation the best we could and a new wheelchair was possible but what else. He tried desperately to say what else he would like and it was with the utmost difficulty that his brother found out he would like a mattress because he was sleeping on Mother Earth. As he is incontinent, he needed one with a waterproof cover so, when we go to Soroti, we shall by a mattress and a length of waterproof material and a zip for him. Outside, we sat and talked with the Reverend who was the first person I have met who knew the recent news as he listened to the World Service; an interesting version of American politics and one I agreed with. He said that Emma liked to listen when his favourite team, Chelsea, was playing so we would also buy him his own radio!
On to the home of Samuel, almost 3 years old and with cerebral palsy. His mother says he did not cry for one month and was passed from Kamaca HC to Atutur Hospital and then to Mbale Hospital. The mother had had nine pregnancies with four surviving children.
Omoding, a 2½ year old, had been admitted to Kumi Hospital Nutrition Unit where he had stayed for two months with the hospital bills paid by our fund. He looked better but, like most of these children, looks at least half his age.
Apolot was a 5 year old athetoid cerebral palsy following a long and difficult delivery. We planned for Peter to monitor the child and would consider making parallel bars when he thought it suitable.
Olupot was a 3 year old sickler (sickle cell anaemia) who, thanks to Peter’s intervention, had learnt to walk. He looked so small and sick that we gave the mother 30,000/= to enable her to bring Opolot to Kumi Hospital Sickler Clinic in the morning and to buy any drugs that may be prescribed.
Adeke was a 13 year old girl with a congenital absence of the right leg. It was not at all possible to provide her with a prosthesis due to the absence of any femur. She will come when the Wheels for the World visit Kumi Hospital to try some elbow crutches.
So, seven goats later, we could call it a day and wend our way home. Peace and quiet it was not with the children playing boisterously throughout our supper and it wasn’t until I shut my door that I could even begin to reflect on the day with my mind continuously reverting to our visit to Emma. 27 years and locked into this distorted body with no hope for improvement. Life can be so cruel.