Sometimes you have these days….

Monday 28 April 2014
Ester died, after three more days of waiting to see if she would make it, no miracle has happened. The news was texted while we were at Simon’s funeral. So it was a shitty day. Not really something you like to write on your weblog but write up air and yes it is facing reality. There are also less nice days in beautiful Uganda and sometimes I have to say that.
At times like this I wonder what on earth we started and how I ever got it into my head to set up a department for malnourished children. The department was meant to help children, not to let them die in bushes. Four people died this month, almost all of the patients we had died. Yuck! Is it ignorance, are we not ready to help these children, are we starting too soon or are we just having bad luck? The answer why you do not get here is because finding out what actually killed a child is almost impossible here. I can’t stand it, if we find the cause, then we can learn from it for the next time. I’m not a professional, I’m just whining and I feel guilty with every child that dies. I always think it’s because of our actions, but I have to learn to recognise that there can be so much going on inside a patient that medication and feeding is not enough.

Every week we go into the villages to alert the local population to malnutrition. We show photos of children who were malnourished and who have been refurbished, but also of children who have died. The locals have their own opinion and sometimes rely more on a traditional herbal doctor than a hospital. They tell each other that these are traditional diseases and have no idea how serious the matter is. So did Esther’s grandmother, she visited several traditional doctors who all spent a lot of money, with what? Some local remedies and nonsense. Even in the hospital, carers from other patients came to tell her that this disease cannot be treated in a hospital and that the child is going to die… well that’s what happened. Not because we don’t know how to treat a malnourished child but because they are often brought in far too late and there are so many complications that the chances of survival are zero.
I was afraid that I had made Esther sicker than she already was. She had severe diarrhoea, as the milk went in it came out after half a minute. So I went on the soya/rider step that contained less protein and vitamins but which prevented her from drying out due to the severe diarrhoea. The diarrhoea stopped but her body swelled up even more because she retained more fluid, she could barely open her eyes and slept all day. She came in when she could still talk and sit, now she only got sicker. After 2 days back on the milk, the diarrhoea had stopped but a low blood sugar and no blood vessel to be found because she was so swollen. A blood transfusion was necessary but very risky because more fluid would enter her body. To no avail, her body gave up the fight and Esther is no longer there. For her grandmother it was her third grandchild who died and of her own children there were apparently few left. It makes me so sad and powerless, should we continue with this?

Simon, dear Simon,

Simon had a subscription to the malnutrition department. He was admitted about three quarters of a year ago. Mothers had dumped him with fathers because she had finished with that child. Fathers had no idea how to take care of his 8 month old child but in the process he learned and I have never met such a caring and loving father.
Simon was malnourished but we would have been on the right track if he hadn’t had HIV. They say AIDS KILLS and yes that is true. The last couple of months have been beautiful but also sad. When Simon was discharged from hospital his father proudly went with him to his family to build a bright future for the two of us. Unfortunately Simon came back sick several times but always went home refreshed. His father did his best but just missed out on the ability to take care of his child at home just as much as in the hospital where there is constant supervision of the patient’s care.
So we took Simon and his father into our home so that we could help them and be there on time when he was sick again. They were a beautiful couple together and they looked very much alike. Simon had his father’s big nose and huge brown eyes with very long eyelashes. It was touching to see how much this man loved his child and how much he did his best to take care of Simon. I have never seen a father clean up and wash so much shit and piss and be so caring. A special couple so…. When Simon came out of the hospital in December he really had bacon on his buttocks (which was proudly shown by his father) and he had round cheeks. The most beautiful thing was his smile, then his upper lip curled up and that made you happy too. Simon was doing well and he ate like hell. Put on a loud throat if he saw anything of food and opened that tear as soon as his father was out of the picture. Sometimes it made you feel a bit weedy, but there was life in the male and that gave hope.
Until Simon fell ill again (last February), malaria, nothing serious, you would think a cure and he would recover. By that time he was on HIV medication so his body was stronger. But what kind of healthy people is a disease that is fairly easy to fight can be deadly for someone with HIV/Aids. In order not to take any risks, we took him to a good hospital with a department for malnutrition, where they could fix him up. And then I knew for sure that I had done everything I could to give him the best possible care. Simon did not recover, only got sicker and when I saw him yesterday I whispered to him to go, he was suffering. So skinny, those big, brown, lifeless eyes. Where was that curly lip and that little guy where he roared for every fart? His father was desperate and tired. A few hours later I received the phone call that Simon had died. It wasn’t easy to find transport because nobody wants to transport a corpse, because that brings bad luck. So double the price but who cares?
With a crying father and his dead child on his lap, we quietly drove to the family at high speed. Today we buried Simon. The whole group of the agricultural project went along to express their sympathy, Simon and his father were always there too. Tears were shed but also the realisation that AIDS literally had kills came back to me.

Hello dear Simon, you have fought to the end, rest softly, we have enjoyed and loved you, we will miss you!

Sometimes you have those days when you don’t know it anymore.

Sometimes you don’t remember those days. The children are at home for the holidays, 4 weeks. I always find it very pleasant but also difficult to find the balance again. Large pots and pans of food have to be cooked because most of them are in puberty, they want to go to the disco, do a lot of schoolwork, help with the housework and you want to give them all attention….

I especially have problems with myself, I am impatient and I notice that I am very bossy to keep things in line. I want the children to have a nice holiday but with a meddler like me, I can imagine that they have had enough.
In the Netherlands you have fellow mothers, who probably suffer from the same feeling, but here you don’t have many outlets and I would like to do well.

Saige, I can’t fathom him. One day he cooperates, the next day there is no country to sail with him. I suspect he is autistic and would like to learn how to deal with this. He goes to school to learn social skills, not to get smarter. He is 15 and in group four and doesn’t understand what they are teaching him. At home we have to do homework, all the answers have to be given because he doesn’t know them. I understand that he hates that and then he crawls into his shell. He doesn’t know how to express himself and sometimes he doesn’t dare ask. At other times he asks your head about everything (not about schoolwork) and then I try to answer all the questions. He is crazy about his bicycle, which he tries to repair himself but it often breaks down more than it is repaired. I can send him to the shop ten times a day or have the car washed, then he is in his element and he gets a penny for all the work he has done. He eats it right away, goes to get a lot of sweets. He still urinates in his bed almost every evening, there has been a period of time that he kept himself clean after bedtime. Washing bed linen and bathing, now I really have to ask for it. He lives in his own little world and sometimes I am impatient and moody towards him. He doesn’t answer my questions or looks the other way. Yesterday we went for a swim, Siage has been outside the fence for half an hour and is about to pull out. I ask him if he has packed his things because he likes swimming. It stays quiet. After asking three times my patience has run out but I am not allowed to raise my voice or grab him firmly because he has been abused enough at home. In the end he says he doesn’t have swimming trunks. A little late, we are already in the car to leave. Too bad, I think you should have opened your mouth and let’s go. At the swimming pool he’s quiet, rams on the tablet to see if that thing wants to jump on by force. I see it fall apart again on the ground and give him a warning. Why can’t I just trust him with that thing, he has to learn it sometime? The other boys didn’t take anything either but ended up jumping into the water in their pants and having fun…. Saige is sitting there, waiting for us to eat, because if he doesn’t get food in time he is upset and irritated.
When he is upside down he sometimes says horrible things in Ugandan that he learned from his father because we don’t speak that kind of language here at home, I will be cursed or he will take it out on Babirye. That makes me even more angry.

Saige can also be very sweet, especially with smaller children. Sometimes that frightens me. He is a boy of 15 and he has seen a lot in his life so we always try to supervise him. He can get up in the morning and do all the dishes on his own but if you ask him, he ignores you. He can wash the car for hours and fish the last bit of water out of the water tank to make the windows shine, then he is in his element. I love this little boy but I can’t give him love. He doesn’t allow it. We can never cuddle him and sometimes I think the only thing we can offer him is safety and a plate full of food every day.
In the Netherlands he would go to a special school and as a parent you would get guidance or information when raising a boy like Saige. Here in the bush the word autism doesn’t exist and you will be judged and judged on the way you behave. I want to be there for him but sometimes it is so difficult to deal with him that I don’t feel like it. Then I feel guilty, he deserves the attention, the love. Yet he has to learn to participate in the family and in this society otherwise it becomes difficult for him. Saige is my biggest worry child. What is he going to do in the future because we can’t keep him in school until he is 20? We talk a lot about it but we haven’t decided yet. I have decided to study autism more deeply and hope that I will learn how to deal with him so that we can both get more satisfaction and build a better bond.

For the rest, the family is doing well. Frank and Pinto are in the first year of secondary school. Peter goes to the technical school and studies to be a carpenter, Rosias is in the last year of primary school and Babirye is already in grade 4 and would like to go to boarding school and Rosah…. Well, that’s still a hell of a thing.She prefers to stay home and play.