Monday, 28 October 2013

Tough reality



I’m sitting on our bed listening to the rain outside and feeling shell-shocked after today.   It has been an interesting and challenging day but so much has happened it’s hard to put it into one blog.  I’ve decided that I will tell you some of the things we have done and seen today.

·        We walked to the centre for 8.30am while Charles took our bags in the car
·        We saw queues of people outside, some old or sick, some without shoes, some with walking poles – but all guardians of sponsored children

       I played Frisbee and sang songs with about 50 unexpected children while Tom, Moses and Allen talked to the guardians about the proposal to have all the children tested for HIV.
·         
       Tom and I played with these children plus more while Moses and Allen registered consent for HIV testing from the guardians.  We played with the parachute and a ball made out of old plastic bags that we found on the floor (along with a dead frog and sundry bits of rubbish).

·        Tom played his whistle and we taught the children to play musical statues and bumps.
·        After nearly 2 hours of games we sat and chatted to people still waiting and realised that a group of carers had arrived with children with disabilities (CWD) as they had misunderstood the radio announcement and thought they should come at 8.30am instead of 2.30pm
·        We got out the bag of sensory toys donated by our friend Katy and tried to keep the more disabled children amused.
·        When all the guardians of sponsored children had left, we sent Moses and Charles to buy bottles of soda (pop) and a bread roll for each adult and child who had been waiting for 4 hours to talk to us about CWD (21 adults and 25 children) – we couldn’t bear that they had nothing to eat or drink.
·        We took this group into the large hall where we all sat on the floor and Moses explained that we wanted to understand more about their lives so that Global Care could better work towards identifying ways they could support CWD.

·        While Tom and Moses and Allen talked to people, I played ball with a 3 year old girl with Down’s syndrome, read with several children, provided more sensory toys for blind and deaf toddlers, and made badges with those old enough and able to make them.  

·        I met Fred, a lovely little boy. He’d played with the parachute with us earlier, and Tom and I took turns to stand behind him for support, or lift him up, while he clung onto the parachute with his stiff slow little hands and tried to balance on his tiny bent legs.  He was a joy to be with – full of smiles and laughing at the other children.  We think he had cerebral malaria and during surgery when he was 2 he suffered a brain injury.

·        I met Faith, who has spina bifida. Her legs were covered in sores and she had pronounced hydrocephalus.  Her mother wants to take Faith to a neuro-surgical unit, but the nearest one is in Mulago near Kampala 400 km away.  She can’t possibly take Faith there. Faith needs a wheelchair but there aren’t any. Her mother has to carry her on her back (what happens when she gets too big to carry?)

·        I talked to the mother of the girl with Down’s syndrome.  She said that people (including her husband) think that time spent with CWD is wasted because they are useless children.  They say, ‘you’re running around all the time but you are not doing any work’.  She was told her daughter would never walk or talk before she was 6 years old.  She’s doing both…

·        I met the father of a girl who was born blind and has fits.  The father thinks the fits are a sign of witchcraft so he takes her to the witch doctor.  He has never taken her to a medical doctor because he thinks there is no point.  I listened while the ladies around him explained to him about epilepsy.

·        I met Mary, a bright girl who had a botched repair of congenital dislocation of the hip.  She asked if she could borrow a book to take to read to her sister. I said yes!

·        I met Grace, a 3 year old who was born with HIV.  They didn’t know what was making her sick and she became very ill and when we saw her she had brain dysfunction and severe squints.  Her mother ran off when she was born so her grandparents looked after her.  Eventually they took her to TASO and now she has anti-retrovirals (ARVs) and is beginning to improve.  She could shuffle on her bottom.  We gave the grandparents (who appeared to be very old) clothes for an 18 month old.  She was poking into everything.  They can’t afford to buy her the food she needs so her chances of major improvement are limited. We all thought that with time and treatment she might well walk.

·        In the middle of all this we went into town to a café where they were only serving cow or goat and I ate cow meat with soup and rice while Allen had goat stomach and matoke.  She was impressed by my reaction.

These people have limited support.  They live with no running water and have to go out to work to pay for food.  What do you do with a CWD if you go to work here?  There are no day care centres in Rukungiri.  They have little help with their disabled children apart from limited support for health care from the local diocese – and that isn’t available to everyone.  They have no transport and no walking aids for the children so they walk with children of all ages strapped to their backs.  We heard of people unable to go to church because the church can’t cope with the child’s behaviour.  I haven’t told you about everyone we met – its too much to take in.  No-one spoke in the car on the way back to our hotel – because at the minute we feel like we’ve met the most vulnerable children and can do nothing to help.  Now we have to digest what we’ve heard and try to help Moses and Allen think of ways they could support these families.  For more stories see https.drtomgoesglobal.blogspot.com
 
We paid about 25p per person for a drink and a piece of bread.  Next time I go out for coffee and cake I hope I remember today.  And maybe we can find a way to make it easier for some of these people to feed their children

Tomorrow morning we’re going back to TASO and to visit the women’s wing of the prison – another challenging day I suspect. 

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