[This is a very long page and will take some time to load in its entirety. Due to the large size of this file, pictures of Bonga are located in a separate page: Bonga Gallery]
Bonga Mandla, born 29 September 1997, had a terrible accident. He fell into the swimming pool at his foster home on 28 February 2002. His foster sister Lydia pulled him out and after she and her mother tried to resuscitate him, he was rushed to the Red Cross Hospital in Cape Town where he was partially revived. He was put on life support and eventually sent home, but despite every effort, he died at 5.30pm on 8th May 2002.
Bonga’s life should be remembered not for his burns injury, nor for his drowning, but for the special little boy that he was. His name means Thank You.
The account on these pages could help parents of burned children and also medical professionals who could really benefit from seeing the other side. The siblings are mentioned because of the impact a disabled brother had on their lives. It is never enough to surgically fix a child; their home background needs to be understood.
The Diary shows how Anna, a loving foster parent tackled “the system” – the battle with bureaucracy and attitudes, the medical battles and her learning curve as to the needs of burned children. And then there was the battle to still love a boy who was breathing but no longer really there. Finally: grief and memories. Parents and siblings learning to live without Bonga.
For people coming fresh to grief, even that is not easy. Do you dwell on the living or the dead? It is too common to focus on the one who is lost and emotionally lose the other children who survive. Cremation or burial, tombstone or ashes upon the wind, are also remarkably hard choices to make for the first time.
The battle to help Bonga was very similar to the battle for Dorah (see elsewhere on website), though he was medically less complicated. He was burned as an infant. According to different sources, his mother either died in the same fire or died earlier from TB. His father, allegedly a paraffin seller, placed Bonga in the hospital system and abandoned him there. Bonga had a twin sister who died quite some time after he was injured. It is believed that she died from malnutrition.
No attempt seemed to have been made by the hospital system to retain long-term contact between Bonga and his biological family though he allegedly had an aunt in Cape Town. The fact that he had had a twin sister only became known to Children of Fire when his foster mother was in the middle of being "approved" for fostering.
September 1997
Bonga was born to a poor squatter camp family. Who knows what his potential might have been without burns. Children of Fire works to prevent burns injury through public awareness, first aid and firefighting training.
September 1998
Bonga suffered second and third degree burns to 75 per cent of his body
in a shack fire in a squatter camp near Cape Town. He lost his left hand, toes
on the left foot, his left ear and most of his hair.
Early 1999
Children of Fire became aware of Bonga’s plight. Anna worked at the Sarah Fox Home and started to befriend the reclusive little boy. But he did not speak until he was three and a half years old.
Mid April 2000
Bonga eats by himself now and when nurses try to help him, he screams his head off. I was very pleased to see it. He is desperately trying to speak, but he has the same problem as Dorah had - too much noise in too many languages and he simply shuts off.
23 May 2000
The professor has thanked me for offering to help in organising
another Burns excursion. "It was a wonderful experience with 18 crippled,
deformed children. It was remarkable for me to see how the public responded to
their dispositions in a very positive way and in which way St Elmo's went out
of the way to accommodate us. It was a fantastic afternoon. The process is in
place for Bonga. We are very anxious to get him mobilised and we have asked a
person in private practice to advise us on prosthesis and further management.
The Department of Plastic Surgery is also in the process of doing a major
reconstructive work to his face, especially his nose and forehead."
Bonga
banged his head and the skin on the bold bit split open and became a bit
septic. He also now has sores on his bad leg, because the skin is too
sensitive. The nurses put aqueous cream on him but I think he needs something
more substantial. But tomorrow is the burns unit round and hopefully I will
have some news about the assessment.
June 2000
Bonga is back at Sarah Fox today.
Apparently, he screamed his head off in the minibus all the way to Red Cross
and was crying and screaming and kicking so much there that Red Cross nurses
asked the nurse from SFH to stay and help them deal with him. The results of
the "hundred and twenty tests", as one of the nurses told me, should be known
sometime next week.
August 2000
I spoke to the sister in charge of C2 at RC. She said Bonga spent the entire day at Conradie hospital at the orthpods and came back tired and grumpy. Threw a major tantrum, with screaming, kicking and all that, but after that calmed down and apparently he is fine and happy today again. He might have his shoe as early as next week - or so they claim. But I will have to nail down Prof Rode himself to get anything more precise. This nurse, Sister Petersen, is also very fond of Bonga. She is taking him home for the day tomorrow. She was going to take him for the weekend, but then she said - if you also want him, I'll bring him back and you have him as well. Don't you think it's amazing - at SFH he is considered a stroppy nuisance and at RC everyone loves him.
By late this afternoon Bonga was still at the orthopods. I'll ring RC
tomorrow.
The situation with SFH children's schooling is like this:
boarders, who should not be at SFH in the first place, go to the Thambeletu and
the Bel Porto schools for the handicapped. They are picked up by their
respective schools' transport every morning and delivered back to SFH at about
2pm every day. However, TB children,burns children or raped girls do not go to
school at all. Considering that a course of TB treatment is six months, this
means that a TB child effectively misses the entire year of schooling. Children
like Janine also miss years of schooling by being taken back and forth between
their homes and SFH.
We had Bonga again on Sunday and he was again full of smiles, giggles and "talking" - he verbalises non-stop and one can decipher "bolly, dolly, come on, like that, dog, bye-bye" and a few other almost words. And Francois changed his nappy and even tried to pick him up! Whatever next...
I am not about to start yet another fight with the SFH matron about taking Bonga out. I have had enough fights with her as it is. She is the person who told me that I don't understand anything and am just spoiling Bonga and he would be “much better off with his own kind” - whatever that is supposed to mean...
Just spoke to Sister Petersen, the senior nurse in charge of C2. She is also very concerned about Bonga and thinks that he will definitely be better off in St Joseph's. She will try to get hold of Prof today because ultimately he is responsible for Bonga. Let's hope.
Thanks for writing to the Prof. Let's see if something happens. The outing will take place on 26th August and we will go to he Aquarium.
11 December 2000
No I haven't heard a word from the Variety Club - not even an acknowledgement that they received my letter. So much for their highly-publicised charity.
We had Bonga yesterday and he was so brave that he even agreed to pat our small dogs! And he no longer screams hysterically every time the big dog moves.
By the way, I got a message from Prof Hudson last week that he operated on Janine's eyes. But he didn't say whether he had her eyesight checked.
12 Dec 2000
I think the recipient of this email is the director of Child
Welfare.
From: Giese, S, Sonja, Ms
To: helpkids@mweb.co.za
Cc:
Anna
Sent: Monday, December 11, 2000 6:33 PM
Subject: Bonga's case
Dear Alan
I am a little concerned about the case which I called you about a
couple of weeks ago. I have spoken to Sharon Munnick a couple of times
but have had no real luck. She still hasn't had a chance to read the
child's file and we are concerned that this issue will drag
on until next
year. In the meantime, the quality of care that Bonga is receiving at
Sarah Fox is questionable. Any assistance you could offer with this case
would be greatly appreciated. If you need any further details, I can
forward you the information sent to me by Bonga's host mother, Anna.
Alternatively, you can contact her directly and hear her concerns.
Sonja
Giese
Senior policy researcher, Child Health Policy Institute
Child
Health Unit, UCT
Ph: (021) 685 4103
Fax: (021) 689 5403
13 Dec 2000
I just spoke to Linda, the social worker from St Joseph's. She said Mr. Maninjwa from Child Welfare is taking Bonga's case to court this Friday at 9am, whereafter he will go to the Sarah Fox Hospital and take Bonga to St Joseph's. I will believe it when it happens, but she is positive that everything will be OK. We agreed that if Bonga actually arrives to St Joseph's this Friday, I will not take him this weekend in order to give him a chance to get used to the new place. Instead I will speak to him on the phone and keep in touch with the staff during the week, but next Friday we will take him for Christmas holidays until 8th January. Let's hope it will happen - it's been a long process, four months.
Thank you for your help, support and understanding.
15 Dec 2000
Bonga was transferred to St Joseph's this morning. I spoke to Linda and she told me that he was still very upset, but basically fine. She also said - but he is so cute!
Thank you very much for listening to me over all these months, for helping me and for supporting Bonga and me.
5th Jan 2001
We had a rather hectic but nice break. We've had Bonga for two weeks and these two weeks have been absolutely incredible. I have always felt that there was a spark in him, a lively mind and a lovely character, but it was very difficult to see it through the effects of institutionalisation. However, in the past two weeks he has been transformed from a near mute and rather scared little boy into a fearless, affectionate, funny and very independent bundle of joy. He is now trying to talk all the time, has become very friendly, has learned to kiss and hug, loves books and music (his favourite song is "cwinkle- cwincle lill sarr") and is fiercely independent - he manages to undress himself without help, brushes his own teeth, refuses help when eating and generally wants to be treated like everybody else. It will be hard to take him back to the hospital.
This afternoon I took him to an orthodics specialist, who confirmed my opinion about the state-provided shoes (oh, just throw them away!) and told me that the cheap R50 takkies (plimpsoles) that I bought for Bonga were just the right thing. He gave me some useful suggestions, such as removing the insole from the right shoe and putting it into the left shoe upside down to build up height. He also told me that I must bring Bonga back whenever I feel I need advice or am worried about his walking. Bonga loves his takkies and walks and runs very well in them.
I am also convinced that he does not need a speech therapist. All he needed was love and stimulation - and he got bucketfuls of it during these two weeks. As a result he went from being a near mute to making two to three word sentences. The extended family accepted him without a murmur. One relative said: “He is a lekker dude”, another said: “Ag, shame, but he is so cute!”
I am going back to work on Monday and he will have to go back to St Joseph's until Friday. And how was your break? And did you have any break to speak of?
9 Jan 2001
Is there no prospect at all of Irene becoming continent or will you be forever scooping the poop?
Took Bonga back to St Joseph’s yesterday and he cried bitterly. In fact when we arrived and he sensed that something was going on, he climbed out of the car, marched to me, lifted his arms and said very firmly - no walk! I.e. - you want me to go there - you carry me.
He was very upset when I had to leave him there but the staff were really friendly and tried their best to make him feel better. I rang to check on him a couple of hours later and the nurse said: "Oh, he is OK now, playing. The first hour he just wanted to be carried and cuddled so we all had a go with him." I thought it was really sweet.
My family is in love with Bonga and he seems to fit in perfectly. Like the rest of us, he likes books and music and is a very self-contained, peaceful child, despite all the trauma and neglect. He really needed just some love and stimulation and he just blossomed.
And how is Dorah? What is happening to her school in the end? And how does Tristan cope with having two handicapped "siblings"?
PS - Prof said he operated on Janine's eyelids late in December and that she and Bonga are scheduled for more operation "sometime soon" - but he couldn't remember the dates.
10 Jan 2001
Just rang St Joseph's to check on Bonga. The nurse said - "he is fine, he is playing with the OT right now, doing some exercises." Whatever next...
It seems that with disabled kids it's really a question of luck. I happened to know about St Josephs and Bonga ended up there and in addition to that the social worker there seems to be a human being. But it can also be as in your case - no luck, lots of frustration and no solution in sight...
15 Jan 2001
How long must you still swim in shit (well Irene’s)? A month, two? And how does Tristan cope with it all? He looks very big on the latest photo.
I took Bonga back to St Joseph's this morning. He cried of course, but
not as much as last week. I also met his occupational therapist. She told me
that she has a session with him every day! When I asked her what exactly
she does with him, she said that right now she concentrates on speech.
Basically she reads books to him and teaches him to construct sentences. She
said that initially she thought he had a mental or psychological problem with
speech because he did not react to either Xhosa or Afrikaans. But then he saw
a
picture of a dog and said – “Dog”! That was a breakthrough
for her and since then she speaks only English to him and has also instructed
the nursing staff to speak English to him. It's amazing, don't you think - he
spent two years in an Afrikaans environment and only two weeks with us, but at
St Joseph's they now consider him an English-speaking child. The other thing
that struck me was that last week they marked every single item that I brought
with him - toys, books, clothes, everything - and everything was in
the bag
when I picked him up on Friday. Nothing was stolen - and they used cream on his
head. What more could I ask for?
We had a good time this weekend with him.
But with the rest of the children we are hurtling into teenage stage with an
alarming speed.
22 Jan 2001
First we overslept. Then I discovered that the children ate a week's supply of food in three days and that there was virtually nothing for breakfast. Then I had to go to the boys' school shop to buy them uniforms for this year - and pens and pencils. And when I finally reached St Joseph's - with Bonga wailing because he knows now where we are going - I discovered that he was supposed to go to Red Cross this morning for a plastic surgery assessment. Nobody told me about it on Friday. A nurse told me also that the infamous Mr. Mninjwa, Bonga's social worker, wants to organise a placement for him...
But at least we had a productive weekend – painting. Bonga was there as well, of course. He discovered the "Bonga game" - looks at himself in the mirror, makes funny faces and laughs. His speech is also improving. When I picked him up on Friday, he looked at the nurse and said slowly and clearly, hugging me: “This is the Mama.”
29 Jan 2001
Bonga is doing well. His speech is still very bad, but he is trying. He now makes little phrases, like: "Bonga to school", "Papa book please", "Lydia gone," "Fetch Nicolas", etc.
With daily doses of Vaseline, aqueous cream and some calendula, religiously applied by the nursing staff at St Joseph's, his skin is beginning to look much better. My only gripe with St Joseph's so far is that they don't wash him well - like the rest of the kids, so when I pick him up on Friday he is rather smelly. Otherwise, I find the staff there very friendly, dedicated and unafraid to hug and kiss the children.
12 Feb 2001
Would Children of Fire be prepared to pay for one expander for Bonga? He is scheduled for his hair expander in July, but maybe if we paid for another expander they could insert a second one at the same time, for his face. I know it's going to be horrible for him to have two, but I have seen kids with two expanders at once, and maybe it's better to get it over with in one go, than to suffer time after time. What do you think?
Last time I was in St Joseph's, Jacques asked me when was I going to take him home?
I also met the two occupational therapists who work with Bonga. They both work in English with him and concentrate on speech and fine motor development - holding crayons, pens, etc... They both said that he is doing very well - and were very surprised to hear that at SFH he was considered a nuisance and a troublesome child.
15 Feb 2001
Jacques lives in St Joseph's and he hasn't completely lost his left hand. In fact there is quite a bit more of it left than in Bonga’s case. At least half of the digits are there, but they are all fused and have been for years, so I don't know what it would take to make his hand usable.
I am thinking of approaching a local charity, Riding for Disabled, to see if they wouldn't take Jacques and maybe other burns children from St Joseph's. I would have to find the means to take the kids there of course. St Joseph's is near the airport, while Riding for Disabled is in Constantia, a good 20 to 30 min drive.
Haven't had the energy to continue my battle against SFH. I just find that with a full time job, plus my three kids, plus Bonga on weekends, I simply can’t pursue every battle.
There is an organisation in Quebec called L'assosiasion des Grands Brules. Maybe I should write to them regarding Jacques, what do you think? Perhaps they will be interested in sponsoring him?
February 19, 2001
Dear Don,
I was wondering whether it would be possible to give Bonga two expanders instead of one. I don't know whether this is feasible and/or advisable from the medical point of view, but from the point of view of discomfort and misery, maybe it would be better for him to get it over with as quickly as possible. If you are planning to put one expander for his hair, would it be possible to put another one for his left cheek/lip area? Children of Fire could buy the actual expander. Let me know what you think about this.
I told Bronwen about Jacques and as far as I know she is gathering all the necessary information before she presents his case to the British trustees. Hopefully they will be able to provide him with legs.
Subject: Re: Bonga's operations
I often use more than one expander-so it is not a problem!
Hope
Jacques will get sorted out too
Don
26 Feb 2001
Bonga is going through a "testing" stage, when he throws a tantrum every time I tell him "No", but otherwise he is sweet and lovely as ever. F and Nicolas had a terrible row this morning, just when it was time to rush out to school. Bonga sat in the car on the way to St Joseph's and kept on saying: “Nicolas naughty, Nicolas very naughty.” And today was the first time Bonga didn't cry at all when I brought him back to St Joseph's.
27 March 2001
Bonga has a septic sore on his head that doesn't want to close. I've tried all sorts of creams but it seems that I will have to take him to the doctor and put him on antibiotics.
24 April 2001
The Afro-Americans descended on Shawco yesterday and it was a great success - they hugged everybody in sight (of the right colour of course!), videoed everything, took loads of pictures and spoke in choking, emotional voices about their life-long dream of being with their brothers and sisters becoming a reality, here in Kensington. The old ladies from the seniors' club sold all their crafts, the Americans polished all the food and the organisation made R2,000. At the end of it, one of the seniors said: “This was nice, like Christmas!”
How is Irene? Still in poo and nappies?
Bonga said his first full sentence in English the other day - "I don't want to hold your hand!" I think it's very much him - a very independent spirit.
30 April 2001
Dorah does indeed look very relaxed. How is her speech? Any
improvement? And what in the end happened to her school?
Bonga is
with us over this long weekend -five days at home, what a luxury. I am teaching
him a simple painting programme on the computer. He is also learning to play
with a toy "computer" - a battery operated toy that my children played with
years ago. It's quite simple and is all about pattern recognition and rewards
you with a little irritating tune for every correct answer.
Bonga has
started making proper sentences and sharing information unprompted, as in
"Lydia, Galesi and Nicolas watch TV", "Papa high up in the sky Hong Kong."
Any news about Jacques?
Who is the emaciated looking person on the bed on
one of the pictures?
8th May 2001
Lydia is very good at what she is trying to do for Bonga. She made a photo album of Bonga's pictures - from the cutest to the most harrowing (the two feet and two hands together, for example), and then back to cute pictures. She also has a speech ready for the school assembly, starting with the sentence: "Skin is the biggest organ. I know someone who lost 75 per cent of that organ", etc... It was entirely her idea to raise money for his operation and she is determined to succeed. I support her fully but let her do it all by herself, only giving her advice about the content of her speech (i.e. don't get other issues involved in it, such as the poor quality care at SFH).
PS - did Prof reply? As usual three words?
I know that Children of Fire can pay for his skin expander but I didn't want to stop Lydia. She is very keen to help him now - all her initial reservations about him have long disappeared. The agreement with Red Cross for this round of surgery is that they will pay for the actual surgery and for one skin expander. However, if we want a second one at the same time - and Prof Hudson has agreed to that from the medical point of view - then we will have to buy the second one ourselves.
17 May 2001
Bronwen,
I simply forgot the camera last Friday when I went to pick up Bonga. Will attempt not to leave it at home tomorrow.
The little boy on the pictures - is he the one who stays in some children's home near Jo'burg? He has a lovely face.
What you say about legs for Jacques makes perfect sense. Unfortunately I don't have time to research various options. Do you know anyone in Cape Town who happens to have more time than I do at the moment?
Lydia has agreed to raise money for Bonga through Children of Fire.
21 May 2001
Bonga asked me for the first time about his missing hand. He knows the word hand, but the other day he pointed to his stump and asked - what's that? I said it was his little hand - as opposed to his 'big" right hand.
28 May 2001
I think that the general psychologists wisdom is that Thobe stealing is a sign of lack of confidence, need for re-affirmation of love, affection, etc... She might find that the constant stream of injured children in addition to Dorah is just too much and that she doesn't get enough attention from you. After all she has already ended up with you rather than her own family because somehow nobody had time/energy/love for her. The fact that you look after her and have been doing so for ten years is clearly not enough - she probably needs daily spoken, visible signs of attention/affection from you. Does this make sense?
I wanted to take some more picture of Jacque this morning when I dropped off Bonga, but he was in a rush to get to school.
Bonga meanwhile has learned to say Alexei instead of Galeci and is very proud of himself. But he is still such an insecure child. Last night he was eating and took a handful of food from his plate and threw it on the floor. Not because he was angry or didn't like the food, but just for fun. F, who was keeping him company at the table, got angry and said sharply in a raised voice: "Bonga! No! You do not throw food on the floor!" You should have seen Bonga - he was so devastated by this that he cried with his whole body, sobbing uncontrollably. It took a good half an hour for F to calm him down and convince him that we all still love him and that it was simply not allowed to throw food on the floor. The same thing happens if I get cross with him - total devastation.
I must do some work now. By the way, I've got some scanned pictures of Bonga’s injuries - do you want/need them?
30 May 2001
Yes, Bonga does have a clump of hair on the left side of his face. I don't know where it comes from, but Prof said he would remove it when he fixes the lip and the face. Bonga's grafted skin was indeed put through that contraption and so both his legs, the left arm and his head have this "crocodile" look. As for his hair, Prof Rode said that it was impossible to stretch it enough, but Prof Hudson seems confident that he will be able to fix it. He told me that Jacques had as little hair as Bonga after the fire. At present Jacques has hair on most of the head, with a few bald patches. It's not perfect, but certainly better than having a "crocodile" head!
There is a possibility of having a story on Bonga in the Argus. I am in two minds - on one hand I am still appalled at the neglect he suffered at SFH, but on the other, I am very worried that I will antagonise the powers that be and risk losing him altogether. They wouldn't use his name, but would use mine and it's not difficult to put two and two together. I just feel very protective towards him and don't want any additional stress and trauma for him.
4 June 2001
I wrote to Prof this morning, asking about Jacques and also about
sensitivity in Bonga’s stump.
What is happening with Jacques' case?
What are we waiting for now? The doctors' report? Social workers? By the way, I
managed to take a very nice, smiley picture of Jacque. I'll be on campus
tomorrow and will ask the long-suffering contact of mine to scan it for me.
Bonga has been complaining about his stump being "sore" - or "showr" as he says
it. And last night Alexei accidentally stepped on it while he and Bonga were
playing on the floor. The poor child screamed and thrashed about in absolute
agony for about 10 min. He generally is very tough and doesn't cry easily when
he falls or bumps himself. But this was definitely very sore!
I find Prof's
emails highly unsatisfactory. Well, great, I know now that stump sensitivity is
not uncommon and that physio might help. But then what? What do I do with this
information? Who do I go to?
PS - How is Thobe? Still troubled?
5 June 2001
I have been using a mixture of creams and oils on Bonga and it seems to work. When he first started coming to us, his head was full of sores that kept on splitting open, his elbows and knees had calluses and sores, and his grafted skin was hard and very dry.
I use a generic vitamin E or any other cheap moisturising cream (the cheaper they are the less chance there is of having perfume or alcohol in them) and then I mix it with calendula, jojoba or aloe massage oil - or with all three of them. Every evening after bath I massage Bonga’s entire body with this concoction and then put pyjamas on him - and it seems to help. He no longer has any sores on his head and his knees and elbows also look much-much better. The one problematic area is his mouth. He can't close his mouth properly and dribbles - the skin becomes wet, then it dries, then it becomes hard and then it starts peeling. But for the rest rubbing all these oils into his skins three times a week seems to do the trick.
Let's see what Prof will say to your letter.
Spoke to Linda yesterday. I had told her we want to go ahead with fostering/adoption and she rang to tell me that she was going to write a motivation letter to Bonga’s new social worker. Apparently the infamous Mr. Maninjwqa had written in his parting report that we were unwilling to take the child full time. She asked me about it and when I explained to her that we had no idea whether having him in addition to our own three children could work, that we did not know whether we could cope with a "special needs" child, etc, and that we had responsibility not to traumatise him any further, she agreed with me full heartedly and said she was going to put all of that in her letter - and the fact that I have an adopted sister myself, and therefore have an idea of what is entailed.
PS - Your "Sunday ramblings" were very depressing - mainly because this little boy is just one of so-so many. I sometimes wonder why people like this have children in the first place...
11 June 2001
Still nothing from D? Should I send him another email? I can't understand what his problem is - somebody is offering to pay for prosthetic legs for one of his patients and he seems not to be interested.
Bonga is slowly learning to undress himself. And last night he took off the big socks I put on him when he goes to sleep and put them on his hands! It took him close to an hour but he was so proud of himself!
My occupational therapy colleague said she'll bring some special socks/stockings for him to help with bad circulation in the stump and to soften the skin.
12 June 2001
Just spoke to the owner of Shonaquip. Her name is Shona McDonald, she runs the company and designs the chairs, etc herself. She has a quadriplegic daughter and knows all about integration of disabled children into mainstream schools.
In addition to wheelchairs, she also makes special, individually designed seating aides, i.e. contraptions for patients who cannot sit upright by themselves. She also designs and makes walking frames and - most interestingly for Dorah probably- hi-tech and low-tech alternative communication apparatus. She says that to her knowledge she is the only one to design such alternative speech aids in Africa. She makes a lot of prototypes and is prepared to work on individual children/adults to make what they need.
She also gave me the contact details of an organisation called Integrated Education Committee that she and others started when told that their not-so-perfect children should be put away in institutions. This organisation works with schools, teaching teachers how to deal with non-mainstream pupils and how to adapt teaching techniques for special teachers. She said I should contact them when the time comes to get Bonga into school - because I am determined to send him to a normal school, preferably to the same schools as my boys.
Shonaquip: www.shonaquip.co.za 021-797-8239 email: shonamma@iafrica.com
3 Tiverton Rd, Plumstead, Cape Town
Integrated Education Committee: Michelle Belknap or Caroline Taylor: 021-674-1422 included@mweb.co.za
Regarding special stockings for Bonga. These things are called "tubigrip", but that's all I know for now.
14 June 2001
Despite your unsatisfactory experience with the gel I still hope that it might make a difference to Bonga. I would love to avoid surgery or to minimise it. She also showed me some exercises for his stump.
Still trying to get hold of D. I am one notch up - managed to speak to a (very grumpy and unpleasant) human, probably a secretary. She said that she's got my message and will ask him to ring me when he comes back from operating.
Meanwhile Hanske gave me another piece of information: they have successfully used silastic gel (trade name Cica Care, made by Smith & Nephew) to reduce scarring and release contracture, as an alternative to surgery. She wants to try it on Bonga, although it's a bit late because the recommended timeframe is within two years of the accident. Have you heard about this stuff? Apparently it's very expensive - nearly R200 for a piece that's about 120g, but has done wonders to many of her patients.
25 June 2001
Spoke to the social worker who used to be Mr Maninjwa's supervisor. He is no longer there and Bonga's case is now in her hands. However, she said she is getting a new social worker to replace him and that this woman starts on 1st of July and she will be dealing with his case. She thinks that it will take only a month or two because it has already been established that Bonga can't go back to his biological family.
August 2001
Bonga's operation was cancelled this morning. This time the specialist said that because Bonga has an open wound on his head, they cannot put an expander in. The doctor I spoke to (I think it was the anaesthetist) said that the problem is with the original graft, which was of a very poor quality. Their opinion is that the best for Bonga is to wait, possibly until he is six years old, by which time his skull will become harder and hopefully the terrible grafted skin on top of his head will also thicken a bit and they will then be able to put expanders in.
In their view Bonga's deformed lip is not a problem - that is it's not a functional problem, but a cosmetic one and therefore, unless the lip starts pulling down in such a way that he can't close his mouth, they will not do anything about it. Same with the eye - yes, one can see the inside when he yawns, but it isn't "weeping" all the time, and therefore they are not going to do anything about it either. Ditto for the scars on the tummy - wait, wait, wait until it becomes a functional problem - otherwise live with it. So that's where we are.
I know that they have a limited budget and see thousands of burnt children, but I find it frustrating nevertheless. I want him to have as normal a life as possible and have a different idea about what is functional and what is cosmetic. As in **'s case, I don't agree that spending several years on growing hair, but not thinking of giving ** a prosthetic nose is a very clever idea. I know that the absence of a nose doesn't prevent ** from breathing or sneezing, but it prevents ** from beginning to contemplate normal interaction with other people.
Not only I must go on a parenting course despite having three super-achieving children and turning Bonga from a mute into a chatty, loving and friendly child in six months, I must now put up with the indifference from the medical profession.
It seems that Bonga's operation has been cancelled again - and NOBODY bothered to inform me about it. I rang St Joseph's and they said - no, Bonga is not going to Red Cross on Friday. His next appointment is only for 14th September.
Last week he was sent to RC because the sores on his head had split open again. Nobody bothered to tell me that he was at RC and what decisions the doctors made. I was just told by the nursing staff at St Joseph's that I must wash the wounds with a saline solution - (just to make sure that its really dry and NEVER heals, I suppose...) and that was that.
Got a phone call from the social worker, Ms G. She said that she has submitted her report to the Wynberg child placement office. They now want to know: how much I pay in school fees for my children, why do I want a foster grant when I am so "rich" and what is my involvement in the community where I live. They also said I must go on a foster parenting training for one or two days before they make a decision. She told them that Bonga has been with us for nearly a year, that we don't need training, but they won't hear of it. They also told her to tell me that I shouldn't apply for the foster grant "because it is a lot of money". To which I replied that I will most definitely apply for it because this child needs a lot of therapy and I will be saving a lot of money to the state by removing him from an institution. Give me strength...
We've decided to put Bonga to the UCT crèche next year - depending on the outcome of the skin expanders operation. If it goes well and he recovers quickly, then there will no reason at all for him to stay at St Josephs anymore. The rest of the operations are not as protracted or disfiguring - or complicated. The UCT crèche is supposed to be quite good, and it is not outrageously expensive - about R600 per month (only R200 less than the boy's school - and more than some UCT degrees!)
Do you remember the wire sculpture of a female nude that hangs on the wall in my living room? Bonga the other day looked at it and asked: "What's that?” and before I could reply he answered himself: "Mama!". and when I laughed and said that this wasn't Mama but a woman, he said: "Eysh, Mama-woman!"
I am still concerned about the splitting skin on his head and foot. Is there any solution to that? My worry is that come February, even if his skin is OK on the day of the operation, it's bound to split sometime during the six weeks that it takes to stretch the skin. Do you have any other suggestions? And what of the comment by that registrar that it is anyways better to put issue expanders in after the age of six?
September 2001
Subject: Re: staphylococcus
The professor wrote: "The problem for
Bonga is that antibiotics will actually worsen
is problem. Burnt skin has impaired ability to deal with the
organism - hence the delayed healing."
But what I want to know is
this: if antibiotics are bad for him, what must be done because he isn't
getting any better? If they knew that he has this infection, why didn't they
tell me? It would have saved me R300 and I could have taken measures to prevent
its spread within the family And although blood poisoning may be unlikely, why
must the child be left with open blisters for so long without any attempt to
alleviate the discomfort and pain?
Took Bonga this morning to our own,
private GP because yesterday discovered three more sores on him, some of them
with puss. Meanwhile I also developed similar sores on my hands.
The GP took one look at me and before even looking at Bonga said it was a staphylococcus infection. It's a bacterial infection, which in severe cases can lead to blood poisoning. It lives in the nose and only becomes active if the person's immune system is weak, as in Bonga's case. Left untreated it will only get worse, leading to all sorts of unpleasant consequences. He picked it up at the hospital and I got it from him (along with a fungal skin infection!) because he spends half his time kissing and hugging me.
This diagnosis is in marked contrast with apparent indifference or fatigue shown by some state doctors who seemed to ignore my repeated questions about Bonga's sores. The registrar, who cancelled Bonga's operation two weeks ago because of the sores, simply told me "it will all get better eventually". Not so according to the GP.
Bonga and I are now on a course of antibiotics. We must also put Bactroban cream on the open sores and up our noses. In addition, Bonga must be washed in Dettol and salty water and the rest of the family must have strictly segregated individual towels and sponges. The only nice thing about it all is that Bonga and I get to eat as much natural yoghurt as we want to counteract the effect of the antibiotic on the stomach.
Basically Bonga should be at home, have plenty of vitamins and fruit, have a Dettol + oil treatment every night and he'll be OK.
The nurses at St Joseph's want Bonga to go home "for extended leave", because he has no business being at the hospital for the next five or six months, until the doctors see him again sometime in February. I spoke to the woman in charge of UCT crèche yesterday. She can't wait to get Bonga - she is doing a diploma in teaching and is studying inclusive education and wants to apply all the theory. The crèche is very multicolour, but monolingual - i.e. all instruction is only in English, which is a good thing in Bonga's case.
His birthday is in two weeks. We'll have a proper party for him - balloons, streamers... I am planning to invite three or four of his friends and take them out somewhere once they've played at home.
Bonga cried this morning when I took him back and said in a little plaintive voice - "Mama, I am not going to hospital, I am not staying here...” Broke my heart.
But we know what he wants for his birthday - a bike. The other day he looked at the boys' new bikes and said - "Nicolas bike, Alexei bike. Where is Bonga bike?" We said that he didn't have one. So he replied - "Bonga buy bike!"
You made me feel so much better! I was really beginning to feel a bit
depressed yesterday when this doctor said that every problem with Bonga that I
mentioned wasn't actually a problem but a cosmetic issue! What is your
suggestion for the recurrent wounds on Bonga's head and foot? Is it possible to
give him another graft on the head? The wounds always come back, both on the
head and on the foot.
And if the decision is NOT to put tissue
expanders in his head until next year or until his six years old, can we maybe
concentrate on his hand, lip, eye and tummy?
27 September 2001
Bonga has just turned four.
Bonga's very first birthday party was a resounding success. He was at first very confused and couldn't understand why we left his friends at St Joseph's on Friday afternoon. He then wasn't sure why we went to pick them up on Saturday morning!
However, once we got to the little puppet theatre, he and his two friends really liked it. In addition, a puppet gave Bonga a special birthday bunch of field flowers! And told everyone that it was Bonga's birthday!
At home they had animal shaped chicken pieces, crisps and fizzy drinks. They then even managed to have a bit of a nap, before watching a video and eating cake. Bonga blew out all his candles with great joy.
Once the two friends were back in St Joseph's we could give Bonga his presents. And he liked everyone of them and in particular the Barney bike! However, we discovered that his left leg and foot are so weak that he can't really cycle very easily. He does half a turn with the right pedal, then half a turn backwards and then forward again because he can't press the pedal down with the left leg. But he'll get there.
The festivities started at 9:30 in the morning and ended nearly at 6 in the evening!
October 2001.
Bonga was moved from St Joseph's Children's Home in Cape Town to live full time with his new foster family, and Children of Fire's Cape Town representative Anna du Bois is now his mother. She and her husband already have three of their own children but the family have all welcomed Bonga into their midst. Children of Fire will still be there to help financially if needed or with advice by phone and email.
Children of Fire strongly recommends the use of foster families where biological families have died, are untraceable, are incapable of coping with the burned child or where they reject the child. However we urge a backup system to try to give natural or foster parents of severely burned children a break once in a while, maybe like the Marang House organisation www.marang.org.za in Johannesburg.
Burned children are complicated to care for emotionally and physically. They cannot be lost among the scores of children in children's homes if there is ever the alternative of a good family that is prepared to take them on.
That said, such families are rare and often South African social workers are quite negative about moving children, especially if it is to a family of a different skin colour to that of the child. The situation with Oscar (see elsewhere on website) remains unresolved in June 2002.
Bonga was one of the lucky ones. Anna and family have been his friends for quite some time but once they had the authority, they could help him far more effectively than was possible before. Also they could see every day what he could and couldn’t do, and cared enough to pursue solutions to problems through all the remaining bureaucratic hurdles.
Anna contined Bonga's treatment in the Red Cross hospital in Cape Town. As elsewhere in the country, using public hospitals is extremely frustrating if time is precious and some of the inefficiencies of the system simply add to the myth of "African time" - sometimes interpreted as "arrive when you like!"
Phoned Bonga's social worker in mid October 2001. She had told me five weeks ago that the decision on fostering would be made within two weeks. She then gave the number of the office in charge of screening social workers' reports. The number was engaged for half the morning. Finally I got through - oh, no, they said, we know nothing, it has nothing to do with us. Ring the children's court in Wynberg. So I ring the court and they say, on ho, we've never heard this child's name - ring his social worker!
After a few more calls I established that the social worker did write the report and did deliver it by hand to the appropriate office. However, the person in charge wasn't there and she left the report on the receptionist's desk - and never checked whether the man in charge received it in the end!
Now I know all the hoops we must jump through and there aren't so many of them in theory. The report must be approved by the person in the social services department, who will then send it to the Wynberg magistrate's court to the children's court division. They will set a date for a court hearing. we will then have to go to court in person - the social worker, Bonga and myself, and the magistrate will either give final approval or send us packing. For now, though, I am trying to get the social worker to ring the right office to find out where her report is!
20 October 2001
Bonga's brain - no, I don't think he is brain damaged at all. He is just catching up on lost time and also he is very shy with strangers and they often think he is retarded because he won't talk and won't make eye contact. His way of dealing with uncertain situations is to switch off - he looks away and won't react to anything. So people assume that he must be a bit "dof". But he is anything but "dof"! Yesterday we had six children for supper - ours three + Bonga, our char's daughter, Nomaphelo, and Lydia's friend Kim. Nomaphelo ends up with us reasonably regularly because she goes to school up the road from our house (paid by a childless American lawyer friend of mine in London), and every time there is a concert we have to take her there because there is no transport from Guguletu in the evenings. This time the concert was in the morning (today), but Nomaphelo's mother works for someone on Saturday mornings. So Nicholas, Bonga and I went to the concert this morning instead of Thandi and admired Nomaphelo singing with the school choir. When I looked at all these children sitting at the table last night, I nearly laughed because F in fact seemed to enjoy seeing all them wolf down the mountain of hamburgers that I had made.
One of Shawco's drivers was hijacked in Nyanga on Thursday.
And you? I read your latest letter to the Mayor - how depressingly sad. Do you think you will win?
22 October 2001
Spoke to the social worker about Bonga. The report was lost, but they did find it and moreover, have already approved it. She claimed that the report will be sent to the court either tomorrow or Thursday and we will then be given a court date + paperwork for foster grant. Let's hope. Bonga meanwhile had another difficult night because I was stupid enough to give him ice cream after supper. He couldn't fall asleep until half past ten and then wriggled so much in his sleep that his nappy came off and this morning he was soaking wet and very smelly! But for the rest he had a glorious day "helping" everyone in the garden. F is into gardening at the moment but as our garden is more of a weed field than anything, gardening mainly consists of pulling things out and mucking about in mud and dust. Bonga loved it. He could spend hours playing with various objects in the dust, examining bugs and leaves - and no one told him that he shouldn't do it because he will get dirty!
24 October 2001
What's new with the squatter camp? And what is happening with Oscar and Janet's idea of fostering him?
Just received a phone call from the social worker - we can take Bonga home today! The decision was apparently made on 8th October but somehow they lost that report as well. The next hurdle is to locate his birth certificate, and if he doesn't have one, to apply for a new one. Only once we have his birth certificate, will we be able to apply for the foster grant.
I am just sitting here, contemplating the big day. I've fought for Bonga for so long that it is hard to believe that we can now try to start just living with him.
I also had a long conversation with Rene. She was very careful not to say anything too blunt but she clearly seems to think that he has an emotional and/or psychological problem. She bases this opinion on the fact that he doesn't socialise and is very much a loner. He does like the company of adults but according to her never plays with other children. I must say, it has never bothered me very much. Out of my three children the only one who has ever played with children when small was Alexei. Lydia couldn't stand other children and suffered until she reached high school. Nicolas still thinks that most human beings are very boring. He is awkward socially, but gets along brilliantly with women. They think he is adorable - because he can be very funny, friendly and nice - when he doesn't feel threatened by the tide of humanity. Bonga's way of dealing with the uncertainties of life is to switch off. Well, F does that even now and it hasn't prevented him from working, getting married and making lots of children!
But apart from her worry that Bonga is in some or other way damaged, she thinks that the best option is for him to stop coming to the rehabilitation sessions at Red Cross and concentrate on being at the UCT crèche with other, normal children. I also think that this is the best option. Let him be treated as a normal child.
The one thing that he will miss is his weekly aromatherapy and reflexology sessions at Red Cross. But I am going to ask my own reflexologist to do a bit of "community work" and see if she won't treat him for free.
Bonga still sleeps in nappies because he is programmed to pee every two hours - at the hospital they are woken up every two hours to go to the loo. Like this the bedding stays clean. However, I am not prepared to get up every two hours. He is slowly getting there - most mornings his nappy is actually dry, but it's still a bit of a hit-and-miss. I am not too concerned - everyone learns to be dry, some just take longer...
I can see why you are worried about Janet and Oscar. She does travel a lot and doesn't necessarily have the needed Mamma-time. On the other hand, she clearly loves the child and that is the most important part.
Rene also told me that Jacques has now entered the bitter stage of depression. Until recently he still asked, begged for attention and love, but now he feels that the world is against him and since no one wants him, he doesn't want anyone either. It's really terrible. And all of this because that mother of his doesn't want him - but will never let him go to another family either!
I think I will take the rest of the day off - I find it impossible to concentrate on anything at the moment.
29 October 2001
I see you have Janine on the website already. That's nice. Are you going to put Azola and the St Joseph's boys as well? Good luck for the press conference this afternoon.
Bonga went to the UCT crèche this morning for the first time. He was OK until it was time to say goodbye - he then of course started crying terribly. But his teacher is very sensible and friendly - maybe it’s because of her name - Bronwen...
He'll go until lunchtime today and tomorrow and from Wednesday he'll have to go full time. He was very emotional on Friday when I came to take him home for good. He understood that something was happening, but wasn't quite sure what it was. We spent the weekend telling him about the new school, the new teacher, new friends. I bought him clothes, a lunch box, Band-Aids to keep at the crèche, and we talked endlessly about it all. He misses his friend Sisa and keeps on asking about him.
When will Dorah start her new school?
30 October 2001
Alexei saw you on TV yesterday in a news item about theft of fire hydrants. Bonga's second day at the crèche was an even bigger success . He didn't even cry when Francois delivered him.
6 November 2001
I took Bonga to the Ear Nose Throat surgeon after having taken him for a hearing test on October 31st, and the trip was very positive. He said that because Bonga hears well through his right ear: 80 per cent but he starts hearing only at about 40 decibels, as opposed to 25 for normal hearing.
This would explain his "anti-social" behaviour in group situations - he
simply doesn't hear what's going on, or can't make out the right sounds and
simply switches off. It also explains his liking for lying on top of the drum
at the drumming sessions in Red Cross, sitting right up against the CD player
and putting his hand on the instruments when the children practice
music.
The good ear will compensate for the loss of hearing in the left ear
(maximum 30 per cent). He doesn't seem to have an opening in the damaged ear,
or if there is one, it's very small and it isn't straight. It is possible to
fix the left ear, but the ENT felt that it wasn't worth putting Bonga through
yet another operation if he can learn to speak and function socially as he is.
However, when he is 12-13 and the plastic surgeons will reconstruct his ear,
they can at the same time open the passage and it should restore the hearing in
the left ear to normal. For now we have to make sure that we speak clearly to
him, that when we read, we read into his right ear and that we help him
pronounce difficult sounds like "t" - he says "pouch" instead of "touch", for
example. If in six months time he is still struggling, then we can rethink the
situation and consider an operation on the left ear.
Bonga hated having his ears examined - he screamed and kicked and made it very clear that this is not his idea of fun at all! When we came home, F asked him - so, was the doctor nice? And Bonga said: “Bonga - doctor - look ear -Bonga - AAAAAAAA!” And then he put his hands on the ears to show how he hid from the doctor.
I've asked D about Janine, or rather what he was working on and received no reply. I also emailed Rene twice or three times regarding Janine and Jacques - and also with the results of Bonga's hearing test - and received no reply. So I don't know what is going on with Janine, but between my four children and work, I simply don't have time to pursue this. Rene should do - she is in Red Cross every day and is on good terms with both Prof Rode and Prof Hudson.
Good luck with baby naming and all the rest - what a terrible story. Both actually - the mentally retarded mother of five and the other one, who lost three in the fire... Does it ever end?
Wednesday, November 07, 2001
Dear
Anna
Thank you so much for sharing this with me (about Bonga's
hearing). I have spoken to Prof Rode about it and we will now be more
aware of the possibility of similar problems in other children. I am
thinking of Jacques at this stage. I have also found out that
certain antibiotics, when given over a long period of time or to
burned kids admitted to ICU, could cause some deafness. I hope
something can be done for Bonga. I must also admit, I was worried about him -
you know that he might have suffered prolonged emotional and mental
damage as a result of the burn, treatment, smoke inhalation, separation
from family etc. Bonga sure is one very lucky little boy to have you.
Rene
Mid November 2001
Bonga went for a check up by the plastic surgeon at 12:00pm. Anna said: "We promptly arrived at five to twelve. The nurse on duty informed me then that the appointment should have been in fact at 12:30 because the clinic opens at one!
“So this is the system: Everyone is told to come at the same time, whether there are ten patients or 50. Then every child who has bandages has the bandages removed by the nurse and the wounds covered by "Clingfilm". And then everyone waits. There are no toys or books or magazines - just rows of very uncomfortable wooden benches. The only form of entertainment is a TV set that is permanently on - but without any sound.
"Although the clinic officially starts at 1pm the two doctors pitched up at 2pm. Bonga was examined at 2:30. The examination took 7minutes. We had been waiting for two and half hours by then.
"It is a complete mystery to me why everyone has to come at the same time and then wait for up to three hours."
[What Anna did not know was that only waiting two to three hours was good going in the SA state hospitals in 2001.]
The other children found his absence rather hard to deal with - especially Jacques - they miss him a lot and constantly ask about him. They want to know if he has new parents, if he has a lot of food to eat, has he got his own room, does he still live in South Africa, is he happy...?
20 Nov 2001
He is a real academic - excited about the advances he and his team have made with burns treatment and reconstructive surgery, interested in special cases like Bonga or Jacques, but totally disinterested in the basic comfort of well-being of mothers and children who have to wait for him for three hours! I am taking the video to him this Friday, when I'll take Bonga for the next check up.
Fundraising at Lydia's school seems to have died its own death. They wanted it to be part of their outreach programme and I think she was unhappy about that. Then they wanted something else, like a fax from you - which you had sent them weeks and weeks ago. Now they are all writing exams and can only think about that. I'll see - either she will try to do it between the last exam and the last day of school or leave it until next year. I don't think she realised the amount of effort one has to put into something like that.
PS - I read your piece on fear - how sad.
27 November 2001
Bonga is doing fine. He loves his school and loves his new teacher. The only thing is that he still misses his buddy Sisa from St Joseph’s. But he seems to have a made a new friend at the crèche, Riaad. He and I saw the Prof last Friday again. Bonga now wears Granuflex plasters on his head and is scheduled for lip, nose and stump operation for 11th February. He has adjusted to home life like a pro. He and Nicolas now share a room and both seem to like it.
F is still away, coming back on Sunday - and I only got a chance to read in bed once! On all other days I was so exhausted by the time I got to bed, that I fell asleep before even my eyes were closed! Nicolas was nearly mugged on Sunday after a trip to the movies, Alexei is fretting about his first pimples, Lydia is fretting about algebra - you know, normal life with children.
29 Nov 2001
Can't wait to see Jacques with his new legs. Hopefully he'll have them next Friday, when Bonga is due for the next check-up. I'll try to remember to bring the camera with me.
4 Dec 2001
A little boy at Bonga's crèche asked why Bonga was black and his mum white. Another boy replied: "Bonga is not black. He is brown. In fact he was born white but because of the fire he turned brown."
6 December 2001
Bonga doesn't have an email address because he hasn't reached that stage yet! But don't worry, he will have his own mailbox.
Everyone is on holiday at the moment until 14th January. I am taking Bonga for a check-up on 18th January and will also ask D about Janine. I was supposed to go for tea with Rene in the first week of school holidays but completely forgot about it and only remembered about three days ago! Yes, I know, shame on me, but I must say it was only when I went on leave that I realised how incredibly tired I was.
We have a new dilemma with Bonga and so far no one has been able to give me any advice other than: "see what you can manage". Bonga had a friend at St Joseph’s, Sisa. Since moving permanently home Bonga has adapted very well to the new school and all the other new things. He never mentions anyone from St Josephs - except Sisa. He talks about him at least once a day, if not more. About three weeks ago I organised a meeting for him and Sisa at the Red Cross outpatients clinic. You should have seen them - they ran into each other's arms, laughing and giggling and kissing each other. They then spent about an hour playing with each other, totally oblivious to the rest of the world.
The problem is that Sisa is HIV positive. But it is not the virus that scares me. What worries me is that I don't know what is better for Bonga: to live through the trauma of losing his friend now, or to develop a more conscious friendship only to lose him a few years later? I also don't know what is best for Sisa. He has been abandoned by his family and according to the nuns, he never has visitors and no one ever takes him out. Will it be fair on him to take him out to visit Bonga say once a month or once every two weeks, when they are no longer equal, when Bonga has everything and Sisa still has nothing? And the last problem is that I know Sisa reasonably well from observing him at St Josephs - he is a lovely, adorable, clever and completely lovable little boy and I will find it very difficult not to get more and more involved with him... and that will be child number five.
Early January 2002
I feel that I am not doing justice to the cause of the burns children because with all my own children (including Bonga), plus F, two dogs, a full time job and my strong wish to start painting again - oh, yes, and Sisa "lurking" around - I simply don't have the time and energy that is really required for this. Doesn't Janet know someone sensible and dedicated here who could be a real representative here? Who could bug the doctors, travel to parents on farms, etc? I just can't... I was hoping that Rene might want to do it, but she is not interested - she wants to finish off her rehab project, set it up properly so that it can run without her and then leave.
The SFH is being taken over by the government and it will be turned into a primarily Aids hospice. There will still be a burns unit and some form of convalescent care, but its main function will be as an Aids hospice. As it can't be worse than it is now, hopefully it will become better. And hopefully all the difficult people will finally leave - along with the matron.
January 4th 2002
Dear Anna, My recommendation is to make a place for Sisa. Not the same size space/place as that of Bonga, but a place nonetheless. We will all end up loving children who are going to die. That surely is the nature of South Africa - certainly for the rest of your and my lives. The forewarning will not always be as obvious as with Aids, but all friends need a little loving and Bonga's friends are your friends now. I differentiate a little between Tristan and Thobe. She goes to state school and he goes to semi-private school. I can only afford (barely) to send Tristan there but it doesn't mean I don't love Thobe. I just have to choose her space and place in our family life. I take care of some children in the squatter camp. They get full school uniform while other kids just get a handful of sweets. It's a bit like being an investment banker maybe - I'm putting the money or the effort where it achieves something... because I can't buy the whole bank. So give Sisa a fortnightly commitment (and make it up to him if you ever have to cancel - as well as phoning him in advance and speaking to him in person.. not ever relying on a staff member to give him a message) - it's good to show Bonga that we don't abandon friends when our lives change. And as to, eventually, understanding that his friend will die, that is the reality we cannot escape. Children know that there is no equality. I had that problem as soon as I wanted to give Tristan a northern-suburbs type birthday party .. (in the end we alternated - one year with the poorest village kids - one year with the spoiled brats from his school) or how do you explain to a three year old that Father Christmas only goes to rich people's houses... because Tristan asked about the differences very early on… and I tried explaining that Father Christmas only went into a home where everyone believed in him... but soon we just dealt with the fact that some kids have a much luckier childhood than others and that we should share as much as possible, without feeling totally miserable ourselves. Bonga got a lucky break. Sisa is getting a smaller lucky break. Try to invite a childless friend round once in a while (maybe under the pretext of trying to help Bonga and Sisa to socialise more easily) and maybe, just maybe, Sisa will elbow his way into another person's heart as well and get the loving that every human deserves, no matter how short their life will be. In fact maybe because their lives are short, they deserve hugs and smiles even more. (Maybe don't tell your friends about Aids first of all, so they don't start a friendship with the barrier of prejudice...?) Of course it will be hard on you and your family to love and lose, but the loving time is good, isn’t it? bj
January 5th 2002
As I suspected it would be, your advice was the most sensible and one that I was leaning towards already. I will follow it. Spoke to F about it and he is in favour. Next step is to ring St Josephs and tell them that we want to take Sisa for an afternoon. Let's see what happens in time. F is buying a microbus because we no longer fit into a normal car.
8th January 2002
This is so terrible! Are you insured at least? How are all your various charges/children coping with this latest incident? Do you have armed response? We were very much against it, but after our house was cleaned out, we grudgingly agreed to have it. So now we have two dogs, burglar bars, alarm and armed response! Oh, and Lydia has a portable panic button as well. Terrible...
I don't know where Janine picked up TB - will try to find out next Friday when I am taking Bonga to the outpatients. He still has a big hole on his head that simply won't heal. In addition, now that he is growing so furiously, the scar tissue on his tummy pulls his tummy in, sort of cutting it in half. And the tiniest of scratches takes weeks to heal...
But for the rest he is doing very well. Talks non-stop and has become very active and completely fearless. Loves climbing and manages to climbs just about anywhere. The other day I took him to a park and he was climbing up the jungle gym and all those proper, neat middle class parents who were there with their children, just froze and stared in amazement at his ability to push himself up with one hand.
10th Jan 2002
Can you maybe write to D and ask him what's up with Janine? I did ask and you saw his reply. He will probably tell you that someone else is busy with her transfer, but maybe if you press him as head of Children of Fire to actually take the responsibility to move Janine, he might just do it... I'll see him next Friday anyway. Bonga's head is getting from bad to worse. He also needs a new insole for his left shoe. His left leg is now about one cm shorter than the right one. I am taking him to the orthopod on Tuesday.
January 14 2002
To Anna:
Someone like you or Rene or.... whoever ... will emerge... but we have to keep battling to find that person. No one has to be out of pocket on expenses as the charity can reimburse them provable phone or travel costs. One day, such a person/people can be employed.. but they have to prove themselves over a considerable period first. But even with direct supervision here of Pule (6 months) and Collen (6 months) my biggest problem with paid people is their lack of honesty and that is a huge problem with people based in my own home. Next problem is lack of initiative, energy, follow through, literacy (in its widest sense as well), confidence, etc. South Africa is still so apartheid in its attitudes that black South Africans struggle to get respect, action and answers from anyone in officialdom - and that's where most of our obstacles lie. But we need people with mastery of the local languages to work with people who are burned because they are mostly poor and black. And they are certainly able to move more easily in squatter camps than I - though Collen always complained that they listened to me and ignored him.... Together we will eventually find the right people - that's part of the reason I take on various work experience people here - they are hard work to occupy and supervise but I'm in effect trying them out character-wise and to see how trainable they are. In the past year (in addition to Collen) I had a publishing graduate for three months, a would-be journalist, and just finishing today, Amukelani who should have matriculated and who failed. I also have a lady called Zanele who varies in her enthusiasm and who is already on an income level that would make it hard to take her from her secure employment, but who is a trained nanny, can drive, can type very very slowly and who struggles to write reasonable English. She cares, wants a caring career, but together with her current employment perks would cost too much to match - and I can't take such a plunge with charity money. She also doesn't own her own car and mine is such a wreck I can hardly share it. She has agreed to help me with a little boy called Jeffers living in a squatter camp beyond Leratong Hospital.
14 Jan 2002
We had Sisa for the morning yesterday. It all went fine, except that we couldn't really talk to him because my Afrikaans in non-existent and the children's isn't much better (and F is away). Bonga has forgotten what little Afrikaans he had picked up at St Joseph's. Nevertheless the two of them had a good time. Sisa became very quiet and then completely silent on the way back to St Josephs', but I couldn't even ask him if he was OK!
Yesterday afternoon was also hectic - we put our house on the market and yesterday was a show house. So the house had to be cleaned, the dogs taken to a friend, dog poo collected in the garden, and then the children and I went to the Waterfront for three hours. Apparently about 17 people came to see the house - plus every neighbour on our street as well. They simply couldn't resist the opportunity to snoop around while we were out of the house!
I'll keep on looking for someone who would want to become involved in Children of Fire - but as you know it is not easy. People make all those stupid "ag shame, you are so brave" remarks, but that's where it ends.
Spoke to the local welfare department. They said Bonga doesn't qualify for the disability grant because he is under 18 and he doesn't qualify for the care grant either because it applies only to mentally handicapped children. He only qualifies for the straight foster grant, which now stands at R410 per month.. The grant must be issued in Francois’ name because after six years in the country I still don't have an ID book.
21 Jan 2002
D still plans to operate on Bonga on 11 February. The problem of open wounds on his head remains. We must continue with Granuflex and as soon as wound heals (which has already happened a few times) we must ring him and rush Bonga to him before the wound splits open again, which happens after just a few hours. Speaking of Bonga - I took him to the orthopod last week for a new insole for the left shoe. The insole will be ready this afternoon and the orthopod said that he will "give me a good price". Would Children of Fire pay for it by any chance? I still have R300 from Rotary Anns that was supposed to be used for Janine's glasses or Jacques calipers. I've been waiting to spend it on Janine but her case seems to be taking too long for Rotary Anns.
30 Jan 2002
So Janine is still at Red Cross. I might be able to see her on Friday. I am taking Bonga to the outpatients and my car to the garage and as I will be without transport I won't be able to go to the office anyway, so I'll probably visit her in the ward.
I am glad to hear that she is booked for an eye operation - I wish I knew for when.
Bonga still has a hole on his head but apart from that he seems very happy. His language is developing fast now, but he has some amazing constructions: “my bottom is slippening, Millie is scratchening, the seat belt is clickening”... He also says "I'm too wetty, I am too scaredy", etc... Has learnt his first shape, a circle. So he walks around the house trying to spot a circle and then points at it very proudly.
Friday F had his first taste of state hospital care - he took Bonga to the outpatients for the first time. It took them four hours to see the Prof, have the dressing changed and get the medicine for suspected infection.
February 2002
Bonga's operations - They told me month after month that they won't operate because of the wounds on his head and won't do anything with his lip either because there the problem is cosmetic rather than functional (in fact this is not entirely true - he may not dribble all the time, but most of the time his mouth is open and he does dribble). Maybe we should try the private option.
Bonga's operations have been cancelled because of the quality of the original graft. But my worry is that it will just keep on splitting and the operation ill be postponed every time. Is there no other solution? Is it possible to give him another graft, of a better quality, before proceeding with expanders?
[Children of Fire urges hospitals treating severely burned children to plan for the long term and give them the best possible grafts early on.]
I realise that from the state medical services point of view, Bonga's lip and eye are really not a problem, but we want him to have as normal a life as possible: that's hard being hairless and with only one ear, one hand and one fully functioning foot.
How are the children? Does Tristan behave with Dorah like with a
sibling, i.e. get cross with her, feel jealous? The reason I am asking is
because out of my three Lydia and Nicolas treat Bonga as a lovable baby and
never feel jealous, but Alexei does. He gets annoyed when Bonga gets special
treats, like extra juice or something equally silly.
We have
discovered that Bonga is allergic to the chemical colorants/ additives in
things like jelly and commercial sweets. He had a bowl of jelly at 5pm on
Sunday and couldn't fall asleep until 3.30am! And while he was whimpering and
crying and tossing and turning I remembered that a while ago he got a bag of
coloured "chemical" sweets at the hospital and it was the same story. But
ordinary cake, made from plain flour, eggs and sugar does not have any effect
on him.
Bonga has something that looks like warts on his bad foot. He limps and
says it's sore. I am worried that if I put the usual anti-wart cream it might
hurt him. Any suggestions?
There is no speech therapist at a "normal"
crèche. He is of course entitled to this service at Red Cross but the
waiting list there is so long, that he will become mute if we go that route.
This means paying for a private therapist, and normally that's R70 a go. Even
if we find a sympathetic one, who will charge less, it won't be for free. Bonga
also needs a new insole for his left foot, and all sorts of other things like
that.
It is so complicated looking after this lovable little boy. But you know that because of all you have to do for Dorah.
4 February 2002
Went to the welfare department this morning. I was there at 7:30, when they open and there were already 40 people ahead of me. After only one hour of waiting it was my turn. And this is what the official told me: they cannot give me a foster grant for Bonga despite me being in possession of a court order because I don't have the right documents. They only give grants to people with SA ID book, or the ID book of my country of origin (i.e. Canada for him). He simply could not understand that there are no ID books in Canada and stared at me in complete disbelief when I told him that my passport is my ID. F's ID book was either lost or stolen and he hasn't applied for another one yet because he has his SA passport, which contains the so-very-essential barcode and his ID number and his photograph and his signature. No, that's not good enough either. So F must now first apply for a temporary ID book, and then for a proper one. Then, I must also have our marriage certificate translated from French and certified. And finally, because the court clerk misspelled our name on the court order I must get a letter from the social worker, stating that we are who we say we are. And only then can I come back to the welfare department and start the whole process.
The funny thing is that when they gave us the child nobody, but nobody at all, worried about ID books, marriage certificates or correctly spelt names...
Sent: Friday, February 08, 2002 12:43 PM
Dear D,
Bonga and I went to see Doctor "A" in the ward this morning. He dismissed every single thing you wanted to do on Monday and at first told me that I need not bother bringing Bonga on Sunday because there is nothing to operate on. He said he would not put a tissue expander because of the wound; would not do the scar on the face because it will come back anyways; would not work on the lip or nose because he would have to work on it again in two years time, and would not do the thumb because it can't be made functional and Bonga manages to do everything with one hand anyways. His suggestion was to invest in a good wig.
I hope next time Bonga is scheduled for surgery it will be your turn - you know him and you know me and you don't treat me like shit.
Early Februrary 2002
I don't know his name – just his initials. He typifies the worst qualities of a medical professional - plenty of ego and not a drop of compassion. Patients are divided into interesting cases - and the rest...
By the way, saw Janine this morning in Red Cross. She is one third of the way with her nose procedure. The skin and cartilage are on the nose, but still need a lot of shaping.
14 February 2002
Hi, this is the text of my letter.
Dear Professor,
I am writing to you in my private capacity, as a foster parent of a disabled child. I wish to lodge an official complaint against Dr A, who operated on my foster son, Bonga Mandla, on Monday 11 February. Bonga, who is now four and half years old, was burnt in a shack fire at the age of one. He sustained severe burns to 75 per cent of his body and as a result of the accident lost all fingers and half of the thumb on the left hand, toes on the left foot, his left ear and most of his hair, in addition to all the scarring on his arms, legs and abdomen. He is also almost deaf on the left ear. Bonga still needs a lot of reconstructive surgery and is being treated by Professor Don Hudson.
Bonga was scheduled for surgery on 11 February and on Friday 8 February I took him to the Red Cross outpatients clinic. There he was seen by the registrar, who agreed that five procedures would be carried out on Monday - reshaping the lip, reshaping the nose, reducing the scar on the face, closing a chronic wound on the head and releasing the thumb on the left hand. Professor Hudson also examined Bonga that morning and confirmed that this is what was going to be done on Monday. I signed the consent forms, but then it turned out that it was not going to be Prof Hudson's turn to operate on Monday but Dr A's, and I was asked to go to the ward to see this doctor for a final confirmation.
When I arrived to the ward with my son, Dr A was examining another child. When he finished, he turned to the registrar and asked him where was "the next one". He did not introduce himself to me or greet me. He did not greet Bonga either, but simply pulled him closer and examined the relevant parts, without ever making eye contact, or talking to him or making any attempt whatsoever to acknowledge that Bonga is a human being, not a piece of meat. Dr A then told the registrar in an extremely bored voice that it was " a completely stupid idea" to carry out the proposed procedures. He then said that he could not see why I wanted to bring Bonga for the operation because there was nothing to operate on. All of this was told to the registrar and not to me. After some persuasion from the registrar Dr A finally agreed to close the wound on Bonga's head.
At no time during the encounter did Dr A try to explain to me rather than to the registrar why he doesn't want to operate. He made it very clear that he thought that Prof Hudson's ideas were stupid and that he was not going to waste his time. He also became very irritated when I questioned his assertion that there was nothing that he could do for Bonga. He addressed me in an extremely arrogant manner of supreme boredom and seemed to derive some kind of satisfaction from seeing me upset. He eventually agreed to close the wound, almost as a favour to the registrar, rather than as part of his duty as a surgeon. After the encounter the registrar told me that I was not the first parent he has had to calm down and comfort "after Dr A has had a go at them".
I was obviously very upset at seeing my child treated like this and at the arrogance and inhumanity of this doctor. I was also horrified when I realised that Bonga's treatment and well-being depended purely on the whim of a particular doctor. In the light of this encounter I need to know on what basis the decisions are made. How is it possible for a doctor who is not the treating doctor to simply refuse point blank to carry out the procedures that have been planned for months by the treating doctor?
I also find that Dr A’s attitude to patients and their parents is highly unprofessional and in fact cruel. It is not enough to know how to operate. He works in a paediatric hospital and part of his job is dealing with parents and patients in a humane and professional manner. And this means introducing himself, greeting the patients, explaining the procedures in a clear manner, and not calling his colleagues stupid.
Since last week I have also been told by our medical student volunteers that he is equally rude and arrogant with students, that he refuses to wear a surgical mask in the operating theatre and that he spends an inordinate amount of time boasting that he is the best surgeon in the world.
I find all of this very worrying, not only for my own child but for other children too. A man, who seems to think that standard rules do not apply to him and that he can do as he pleases and who cannot control his temper, is not a good doctor. By ignoring the basic rules and by treating patients in such inhumane manner, he will end up putting their well-being at risk.
At the very least I request a personal (that is written and signed by him personally, not by some underling) written apology from this doctor for his unacceptable, rude and unprofessional behaviour. I would also like to receive reassurance from his superiors that his arrogant and unprofessional behaviour will be stopped and that he will made to follow all the rules - for the sake of his patients and their parents, if not for his own sake.
Thank you for reading this long letter. Bonga is very precious to us and I want to be sure that he - and other children, whose parents might not have the confidence to complain - will receive the best possible care, which will not depend on inflated egos and personal frustrations of individual doctors.
Sincerely, Anna
28 February 2002
Just received an official reply from Prof Hudson to my complaint about Dr "A". He says that I will receive a personal apology from the "Dr A", but meanwhile I received one from him and his letter was copied to the Dean and the head of the burns unit at Red Cross as well. Hopefully this will help the Dr A to follow the rules at least for a while...
Bonga fell into the pool at the end of February 2002. Life was full of joys, triumphs, and battles for the living thriving boy before that date.
18 March 2002
Bonga is still hanging on. He is slightly worse today than he was
yesterday. The head of the ICU came to see him this morning and asked me if I
was in favour of euthanasia. When I said yes, he sighed and replied –
“We can't do it..”.
Bonga is now all puffy because he can't get
rid of the fluid in his body. This is caused by immobility, which is aggravated
by severe sedation. But without sedation he goes into terrible distress and
becomes severely spastic. This will help him pass urine but will cause so much
pain and discomfort otherwise that on balance it's better for him to be a bit
puffy and sleep than to pee a lot but be in pain.
We managed to take him
home yesterday for a few hours. Lydia and I brought him home at about half past
eleven. He was a bit agitated, raspy and wheezy but once in my bed, he calmed
down very quickly and fell asleep peacefully. He looked almost his normal self,
except that his legs were very outstretched. But by two o'clock he started
struggling and Francois also noticed the puffiness. By the time I took him back
at four o'clock, having tried for two hours to calm him and to find a
comfortable position for him, he was gasping for air, choking and was so stiff
I had to walk sideways through the doorway.
Once back in hospital he
settled quite quickly in his cot and fell asleep. But he remained wheezy and
puffy.
For the rest, my mother is recovering from her brain surgery and
seems to be doing fine.
PS - I went on the website and read the entry on
Bonga. God, I miss him so much...
19 March 2002
Went to the hospital for the ward round. The prof in charge said the
puffiness might be caused by kidneys, but might also be due to Bonga’s
immobility. Bonga also seems to have a cold. At any rate, the prof said -
increase the dose of everything and keep him comfortable. He said even if
it is kidney failure it will be painless and they will not do anything anyway -
apart from giving him more morphine if necessary.
I think the children
need to know that I am not going to force Bonga to "live" just for the sake of
living - after all this is an incredibly religious society where many people
firmly believe that everything, including your child's suffering is in the
hands of God. I don't know how many times I have been told in the past 18 days
that I must just pray and things will sort themselves out. God will provide.
F is very depressed. I think this slow death is really taking its toll. He
was so caring, totally absorbed in cooking, driving, hugging, in the first
week, that now he's just washed out. But there is not much I can do about it -
we all have different ways of dealing with Bonga's death. I just try to make
sure that he has time and space to be on his own.
I am going back to the
hospital in an hour's time, to be there for the ward round when the professor
in charge will be there. I want to ask him about kidney failure - several
doctors told me now that this may be the case. I need to know whether he thinks
it's likely and if
so, what are the implications - will it be days or
weeks? Will Bonga need more morphine?
My mother is recovering well, she is
even allowed to walk a little. She still likes the hospital and seems perfectly
happy.
Didi said yesterday that when Bonga dies now, it will be his
second death and she is terrified of it while at the same time wishing for his
release and the end of his suffering.
Love. A
PS - Saw Janine
yesterday. She still look pretty awful but one can see the nose emerging from
all the swelling, blood and scars. They also fixed her eyelids so the eyes are
no longer pulled down. It seems that her mother saved the blasted wig after all
because Janine was wearing it yesterday. It looks pretty terrible, totally worn
through, etc, but she clearly likes it. I will try to see her today again and
hopefully her mother will be there too. I'll ask her if she wants a new
wig.
20 March 2002
Went to sit with Bonga this morning - he is no longer puffy and generally seemed completely content. The doctors now say they will only increase his dose when and if he starts showing signs of distress. He slept peacefully through most of the morning.
22 March 2002
Went to the ward round this morning. The professor said that we must
start planning to take Bonga home. He is no longer an acute patient but a
chronic one in their terms and therefore needs chronic care.
After that F
and I went to see a specialised daycare centre that was recommended by the Red
Cross physio. It's close to our house and very reasonably priced. It's a nice
place, with bright toys, and all sorts of equipment specifically for mentally
handicapped children. They only care for children with an IQ of 0 to 30.
There is a crèche with toys and mats and balls, Jacuzzi, a nice garden.
It's run by an NGO. The professor said Bonga might live for a few more
weeks - or months - or years...
25 March 2002
Nobody seems to know who is supposed to pay for Bonga's care but the
assumption seems to be that we are. Bonga was at home for several hours
both on Saturday and Sunday. He slept most of the time, only waking up to
cough.
Lydia is not coping well - last night she became hysterical
at the suggestion of him going to St Joseph’s - "you are not going to dump
him there! We took him from there to be with us and now you are thinking of
dumping him there!" and there wasn't even a suggestion
that he goes there
for the whole week...
F is depressed. He says himself that he is unable to
work and doesn't sleep well. He is also silent, irritable and withdrawn. Any
suggestion of help is met with a firm “No"
26 March 2002
Spoke to the relevant doctors at Red Cross - they all seem to be happy
with the idea of Bonga being at St Josephs' for three days and at home for four
days. He will be seen by a cerebral palsy physiotherapist sometime soon.
However, St Joseph's people are not too happy with the three day idea though
and Linda, the social worker, is still working on the management team, trying
to persuade them that there isn't anything revolutionary in this. So if all
works well, Bonga will be home from Thursday afternoon to Tuesday morning and
in St Joseph's from Tuesday morning to Thursday afternoon. He will get physio
at St Josephs' and will also be taken to Red Cross for physiotherapy
sessions. If there are no other delays, then we'll probably take him home
this week.
Last night I calculated how much it will cost to feed Bonga at
home and the cost of his nappies, tins of Ensure, Thandi's additional time to
watch over him, bum cream, eye drops and whatever other occasional medicine.
The total (and only if he can go to St Joseph's for half the week) is three
times the government grant for mentally disabled children (if one manages to
get it). What do other people do? How do they look after their disabled
children?
Thanks for the info about the "happy" tea.
This morning I am
going to meet the doctor who will be in charge of Bonga once he is out of Red
Cross. My colleagues gave me a present - two packs of nappies, a tin of
Ensure, and some baby powder.
27 March 2002
St Josephs is refusing to cooperate - they will either take Bonga full
time and allow us to take him home twice a month at most or
they won't take him at all. Sister Simone, the woman in charge, said we are
welcome to visit him but he will stay put. I of course
declined. So we are
back to square one, trying to figure out how to look after him. Daycare centre
seems to be the answer for now. The woman was so set in her mind, she refused
to hear that three doctors agreed that Bonga could travel twice a week, that if
she
doesn't agree to this then he will travel every day.
28 March 2002
Bonga has pneumonia.
8th April 2002
We are planning to take Bonga home tomorrow. F is getting his own
antique cot from his sister for Bonga this evening, I must rent a suctioning
machine and off we go. They are taking him off morphine today. I discovered a
website for near-drowners. It's rather Christian, but has some very useful
information. www.hugsfoundation.org
For
the rest I am trying to find out about some therapy called Hyperbaric oxygen
therapy. Do you know anything about it? The medical profession seems to dismiss
it out of hand but the parents from these near-drowners on the website all seem
to think that it has done wonders to their children. Apparently it's very
expensive - a couple of years ago 20 sessions were R5,000 - and they seem to
think a child needs about 200!
2nd April 2002
Went to the ward round. There was a new professor this time. He took one
look at Bonga and said that he must get antibiotics. He then listened to his
chest and said that the pneumonia is "well established" in both lungs and quite
high up. He wants to give Bonga
antibiotics to reduce pain. He says that
this level of pneumonia will cause pain in the chest and the mild antibiotic
will reduce that. There is no more talk for now of Bonga going home.
Read
your "chatty" email. Your life sounds quite hectic.
Bonga is still struggling with his pneumonia. It's not raging, but seems
to be draining the last bits of energy from him. He's had it since Thursday and
all he wants to do now is lie on the side and be left alone. Whenever he is
moved, turned, etc, he starts groaning and
crying, and the moment he is
settled in the new position and left in peace he falls asleep. He doesn't have
fever and the noise in the lungs is not terrible, but it is clearly tiring him
out completely. So for now they've stopped telling us that we must take him
home. I
am going to the ward round in an hour’s time to hear what the
professor has to say.
We sold our house to a buyer who still has to sell
her house. Now there are two potential cash buyers. Not a moment too soon -
apart from being a constant reminder of the accident, the house also needs
urgent attention - we discovered a couple of days ago that the old part and the
extension have split apart - one can see the sun shining through the gap
between the walls!
Love. A
PS - and thanks for the R300 from the
Rotaries - Bonga's care is expensive, even now, while he is mostly at Red
Cross.
10th April 2002
Bonga is going home this afternoon. I took him to the daycare centre
this morning for general introductions. They are happy with suctioning him,
tube feeding and turning. The physio will see him tomorrow and will devise a
daily programme for him. He is a bit
agitated today - probably suffering
withdrawals symptoms after nearly six weeks of morphine and Valium. They've
stopped the morphine altogether now and reduced Valium from 40mg per day to
10mg. But he will stay on anti-convulsants.
We've got a bed for him, and
Red Cross will supply us with the first 10 tins of Ensure + his medication for
the next two weeks. Then we have to take him back to Red Cross for a check-up.
I am still pursuing the hyperbaric oxygen therapy. Apparently there is a
doctor working at Red Cross who knows everything there is to know about it. Did
you know that they use this therapy for severe burns in Canada? Paid for by the
state? Here one two-hour session
costs R875 and apparently the whole
course of treatment involves 20 sessions.
11 April 2002
At the moment I don't think there is any chance of opening the
medication debate. We'll have to wait until he develops the next bout of
pneumonia. He is scheduled for a
gastro-tube operation on 24th
April. Then at least we won't have to constantly worry about his nose
tube, which tends to pull, get stuck in his clothes or open and leak.
Can't
work at all today - just sit here with a blank mind. All I want is to go home
and sleep. F is still pretty depressed and uncommunicative. He sort of carries
on as before, preferably avoiding any sensitive issues regarding Bonga.
We
took Bonga home yesterday. He had an easy night. I first gave him a bath,
washed his hair, dressed him in pyjamas and put him in his buggy. He kept on
grunting and generally agitating until I realised that his nappy was dirty.
Once I cleaned him he fell asleep
immediately. He slept easily, waking up
a little bit in the middle of the night. I turned him quickly and went back to
sleep. This morning he was not impressed when I woke him up at 6am, but was not
too impossibly stiff.
As he is not really aware of his surroundings, he
did not become agitated at the new crèche, but just sat in his buggy,
looking at the ceiling. I was OK until that moment, but then it really hit
me - that's it then, this is Bonga's reality. Not his beloved computer
games, not the cycling, not giggling and hiding under my blanket, but lying on
the cushions in the room full of equally retarded/brain injured children,
having "feel and touch" therapy done to him. (They place objects of
different texture into his hand and talk to him about it). I must now get a car
seat and some kind of head support for him, otherwise he will develop
scoliosis.
The place is called The Friends Day Centre, Alexandra Road,
Maitland 7405 tel: 021-511-5801 fax 021-511-5229 email:
fdcentre@iafrica.com
Principal:
Mrs. Meggie Justice. Very nice woman. I met her this morning.
They provide
care and stimulation to children and adults with profound mental disabilities.
Their only criteria is that the person must have an IQ below 30. They have no
cut-off age, i.e. when a person turns 18 they don't tell the parents/carers to
take him or her away.
The place is an NGO but they get a government subsidy
per patient/client. They have 110 patients in total. They have a nurse on duty
every day and she does things like suctioning and administering medicines. They
also have a team of therapists: physio, occupational, speech, etc... Every
patient gets several different kinds of therapy every day. All the learning
happens between 8am and 2pm. After 2pm there is an aftercare service, where
they don't learn anything but just spend time playing, listening to music,
sleeping, or whatever else they do. If the weather is nice they are taken
outside every day at least once a day. The cost is around R400 a term without
transport or aftercare. Aftercare is another R400 per term and transport is
another R600 per term. They pick up and drop off children from all around Cape
Town.
The other daycare centre that takes children similar to Bonga is
called De Heide Day Centre. I haven't been there but spoke to them on the
phone.
The address is: 2nd Avenue Claremont. Phone: 021-5470…. They are
open from 8am to 2pm and they have no aftercare. They also provide transport
and like Friends Day Centre only operate in school term time. Also, like
the Friends Day Centre they are comfortable
with tube feeding, medication,
turning and bed sore prevention programme.
Both centres are monitored by
the Developmental Unit from Red Cross. The unit oversees the general treatment
of brain injured children and CP children. All the physio and other therapies
applied at both daycare centres are taught to the staff by Red Cross doctors
and other specialists. The centres are also regularly visited by doctors from
the developmental unit to make sure that they do the right thing.
I feel
quite comfortable with the idea of Bonga going there for now. He will
definitely get more stimulation and attention than he gets at the moment and
the rest of the family will be able to re-integrate him in the daily life - and
also to have our own lives sort of back
to normal. OK, I know it will
never be "normal", but everything is relative. Two days ago Bonga yawned for
the first time and I nearly cried! He seems also to desperately be trying to
focus his eyes - so far not too successfully.
15 April 2002
Nice poem, thanks. Bonga is back at RC for the day - his feeding tube
came out this
morning while I was dressing him. They are also going to
measure him for soft splints, to stop his arms contracting so much. Tomorrow I
am going to see Shona McDonald of Shonaquip about a proper buggy/wheelchair and
car seat for him. He may live another few weeks but it may be few months,
and during this time he must be safe and
comfortable. I had a bit of a
tough weekend with him. Saturday his tummy worked
non-stop so I
spent the day cleaning up his poo. Then at night he started coughing and kept
me awake until about three in the morning. Sunday he was a bit better but woke
up again in the middle of the night and coughed non-stop until I sat him on my
lap - and then he fell asleep. The moment I tried putting him back to bed, he
started coughing again. So I kept him on my knees in bed until it was
time to get up.
I have a problem with F’s lack of enthusiasm when it
comes to nursing Bonga. His attitude is - "I don't understand why you get so
upset that I don't jump up and anticipate when you need help. You can just
ask." When I pointed out to him that it was not a question of Bonga being my
responsibility and him doing me a favour by helping me, but that Bonga is his
responsibility too, and I should not ask for help at all, he just carried on as
before. I exaggerate. He doesn't agree with me and is perfectly happy to live
with disagreement.
How is your giggly girl Dorah? And Tristan?
16 April 2002
If you go to www.shonaquip.co.za and go to the
products page, you can see the wheelchair I got for Bonga - I think his is the
"Madiba buggy". It's great - it makes him
sit upright, holds his head and
doubles up as a car seat. The price is R4,300. And here is my question - would
Children of Fire pay for it? I know that he is no longer a burns child but a
near drowner, and will understand if you can't justify it to the trustees. But
please
let me know. I bought it from Shonaquip and Shona told me not to
stress and pay when I can. He looks much better in it than in his jogging
pram, mainly because he sits upright instead of half-lying with his head tilted
back. He is also definitely more comfortable in
it when in the car - he
sat very calmly when I drove him to the daycare centre, not grunting or
sweating, just seeming to look around.
His new tube is in place and
hopefully will not come out before next Tuesday when the other tube will be put
in.
For the rest, not much to report other than I got six hours
uninterrupted sleep last night and this morning actually feel quite human!
17 April 2002
I was told by several independent sources that Bonga should be on
Baclofen rather than Valium for his muscle spasms. When I asked - several times
- the Red Cross doctors why they don't prescribe Baclofen, they waved their
arms at me each time and said - because
Valium is better. Baclofen is
supposed to relax the muscles better than Valium but it doesn't make the person
sleepy. Bonga is now on 20mg of Valium, which in the words of our pharmacist
would put a grown man to sleep for a week! However, he is still pretty stiff
and at times it's hard to dress him because I can't bend his arms and legs.
Well, today I went to the pharmacy and asked them about Baclofen and they
confirmed what I've been told by others - it's definitely better than Valium -
but it would cost R1,000 per month. No wonder they wave it away at Red
Cross...
19 April 2002
I realise that you can't chat for a longtime long distance. I know that,
but thanks for calling. I can ring you from the office, as long as I
don't abuse the privilege. As for houses and children, for me there is no
difference whatsoever between my biological children and Bonga - he is one of
my children. And this is one of the reasons why I am thinking that maybe we
should rent a house for a while to see where we go. I might be able to get
the state to pay for at least part of Bonga's wheelchair. Apparently there is a
form that the physio at Red Cross can fill in and submit to whichever
department deals with such things.
I actually rang you yesterday to cry on
your "telephone" shoulder - was just not feeling on top of the world. But
am feeling better today - for no good reason really...
Double storey houses
are fine things indeed, but not in our present situation. Bonga can't swallow
and doesn't cough very well either and this means that he is in real danger of
choking. So he has to be within easy reach of someone at all times, and close
to the
suctioning machine. He sleeps in our room and will continue doing
so for the foreseeable future. If he lives any reasonable time, he will only
get heavier and harder to carry. Had it not been for Bonga, I would have
no problem with a double storey house - they are indeed much better from the
point of view of presentability. As you say - you can hide all the muck
upstairs and pretend that you are superbly organised downstairs!
Wheelchairs - I am not too worried about it. I wrote to a
trusts' administrator who is in charge of a number of trusts giving Shawco
money. She has lots of trusts on her books and I asked her is she has one that
would give me R4,000 for the wheelchair.
Foster grant payout - it was the
bureaucrat at the Social Welfare department who told me that they will pay us
back to January last year.
22 April 2002
I do hope Peter Owen rings - it would be nice to meet him. This morning
was a real blue Monday - we ran out of electricity just before everyone had to
get up, then Nicolas was looking for black socks in the dark and Lydia for navy
school sweater, while F was trying to shave by candle light. Then I was nearly
late to get Lydia and her cello to school and then rushed to Bonga’s
daycare centre only to realise once there that I had left his feeding tube at
home! So it's now 11am and I still haven't done much at all and have a terrible
headache from caffeine deprivation.
Never mind. Nothing in comparison to
your hassles.
I am feeling quite positive about the new hoped-for house
with a stunning view of the
mountain and it needs almost no work.
Bonga had a bad day yesterday - was very stiff most of the day. His
breathing is also getting noisier and noisier - his lungs are slowly filling up
with fluid. But it's not pneumonia yet.
23rd April 2002
Got as far as taking Bonga's folder with the prescription for Baclofen
to the Red Cross pharmacy. Will collect both folder and medicine tomorrow when
I deliver him to the hospital for his operation.
The kids took part in an
interschool math Olympiad yesterday - Alexei got 48 out of 180, Lydia got 108
out of 180 and Nicolas got 120! Got home at nearly 10pm all three tired but
very pleased with themselves. It was a great boost to Alexei simply to be
selected for this thing.
24th April 2002
Got Bonga to Red Cross this morning for his "peg" operation - the
insertion of a feeding tube directly into his stomach. If they do operate,
he'll stay in hospital until Friday afternoon or Monday. If they don't -
because they run out of time, decide that his chest is
too bad or some
other reason - then he'll be home tomorrow afternoon.
25th April 2002
Bonga is in the hospital. He had his operation this morning –
sailed through, while I nearly collapsed with worry. I was just absolutely
terrified - on one hand I wanted him to get through it and to get better, but
on the other thought that if he does struggle and
doesn't make it, it may
be for the best. But the thought of him not being there is just so frightening,
I don't even know how to describe it.
He did start on Baclofen yesterday
but it's too early to say if it's working. For now he is still pretty stiff and
generally very sweaty.
Meanwhile the house sale is reaching its absolute
nightmarish heights. The agent has brought more than 150 people to see the
house so far and every single person who was even remotely interested was put
off by the empty plot of land behind the house - because its zoned commercial.
F is silent, the children seem generally happy.
26 April 2002
We sold the house - finally. I am so relieved.
Bonga is not
well. His operation went well, but his new medication doesn't work for him at
all. I have never seen him so stiff. He couldn’t sleep last night because
of spasms. So he is going back to Valium today and they will increase the dose
as well. He'll be sleeping most of the time because this seems to be the only
way to make him comfortable. And as there is no chance at all of him improving
in any way, then the only priority is for him to be comfortable, even if this
means that he must be asleep.
I am not feeling on top of the world today,
but yesterday my boss praised me for making a massive contribution to Shawco
fundraising in the past year. I felt quite pleased with myself, I must say!
30th April 2002
Spoke to the head of the ICU today who told me to increase the Valium
dose. The GP said the same thing.
Bonga had his gastric tube put in and
it's easier to feed him, but for the rest he is steadily getting worse. He is
so stiff now most of the time that it's really hard to dress him. He also
groans a lot now and wakes up at night. So I am feeling pretty knackered,
especially
in the afternoons when the coffee has worn off but there are
still hours of driving and parenting and cooking ahead.
On a more positive
note, I managed to watch an enjoyable video with everyone, called Duets - about
six strangers ending up at a karaoke competition in Nevada. It's of course not
about karaoke really but about love, life and everything else - without being
sentimental or preachy. No nudity, no sex and not much violence - and even
Nicolas
liked it!
3rd May 2002
We spent two hellish days in Red Cross. Bonga developed
bronchial-pneumonia and started really coughing and groaning during the night
on Tuesday. Wednesday morning I took him back to Red Cross. After two days in
emergency ward we took him home with a bottle of morphine and an official
decision by all concerned that no matter what, all he will get from now on is
morphine - no antibiotics, oxygen or anything else like that. He is finally
peaceful, relaxed and asleep today. Looks lovely and beautiful, although very
thin.
The doctors have also realised that they haven't told us what to
expect and what his death is likely to look like, and what we are supposed to
do when he dies.
8th May 2002
Our lovely beautiful boy died peacefully in his sleep at 5:30pm. He lay in my arms, holding Francois's hand.
10th May 2002
Bonga will be cremated on Monday at 10am. We selected a coffin for him
today - the simplest, chipboard, unpainted one. But we bought a beautiful,
colourful and happy local cloth with pictures of birds and crocodiles and
plants that will be draped over it when he is taken to the crematorium. The
cloth will be returned to us once the coffin is removed from the chapel.
But before that F had to go to the state mortuary to officially identify
Bonga's body. Because his death was "unnatural" they had to perform a
postmortem examination - I was extremely upset about it but understand that
this is the rule. The rule also requires to identify his body. So instead of
going to his father's funeral, F was in Salt River, identifying Bonga.
The
children are OK generally. They have just reached a point when all they want is
to put all of this behind them and get on with their lives, remembering Bonga
the way he was, not the accident, not the funeral arrangements and tears. We
will try to have the Red Cross memorial service as soon as possible.
Early May 2002
The simplest coffin was just under a thousand rands. The whole cremation
service – no stretch limo, pall bearers, priest, etc, just the "pauper's"
coffin and a hearse, plus the cost of the actual cremation, was R1,600.
The
woman will take the wheelchair back. I am taking it tomorrow.
Bonga's
biological family has not been notified as far as I know because no one knows
where his father is anymore.
I spoke to St Joseph’s this morning -
some nurses will come and hopefully Jacques and Christopher as well. In
fact we expect around 150 people. Lydia and her string quartet will play
Twinkle-Twinkle Little Star. Francois will say a few words and Prof Rode too,
and then we will all have tea and biscuits and look at his photographs.
Love, A
I keep on thinking that Bonga is just in hospital and that I
will be able to fetch him very soon...
We did find a house that everyone
likes at last. We are moving on 1 July.
Thanks for the email hugs...
May 2002
Here everything is more or less ready for Saturday, except the food. I
was quoted R2,000 for 150 people and said no. Glenn, my boss, suggested that I
ask everyone I know to bring a plate of cookies or savouries and that will be
enough.
I took Bonga's buggy back this morning, sorted out some of his
stuff, arranged the notice for Red Cross, etc... Tomorrow my friend Jenny and I
will arrange his pictures and Saturday morning Lydia will arrange the
flowers.
It’s Lydia’s birthday next week and we will make a
surprise party.... Something other than sadness and tears of the past few
weeks.
Bonga's memorial service was held at Red Cross on Saturday 18 May at 11am.
About 150 people came to the service - 40 boys from the SACS
Junior School band, their parents, six or seven of his crèche friends
with their parents, sister Charlotte (the nun in charge of the crèche at
St Joseph’s - she was his favourite nun) with Bonga's best buddy from St
Joseph's, Sisa (who is approaching the terminal phase of Aids - it was so sad
to see how thin he is now...) and Christopher, an older burnt boy who knew
Bonga well. About ten of my colleagues came, as well as a number of Shawco
student volunteers, several of Francois's colleagues came, his mother,
sister and brother, who is here for three weeks from Belgium, nurses from Red
Cross, Prof Rode (head of the burns unit), Prof Hudson (head of plastic
surgery)... and more.
Francois started by saying a few words about Bonga's
likes and dislikes, about his bond with Bonga through books and about Bonga's
love for music. He then read a short passage from the Bible, about the
meaninglessness of anything in absence of love.
Then the
crèche children sang together with their teachers the song they sang for
him every day for 10 weeks after his accident - "He's got the whole world in
his hands."
After that Prof Rode spoke about Bonga's time at the
hospital, about how badly he had been burnt. He mentioned that in the first
three months after admission with burns, Bonga had 27 operations. But he also
spoke about the mistake the hospital and the rehabilitation team had made and
have learned from Bonga's experience. They were all focused
on physical
rehabilitation and very little emphasis was made on emotional rehabilitation.
As a result Bonga could sort of fend for himself, but was mute, anti-social and
totally unable to cope with other people. It all changed once he started having
a normal family
life, as you know.
After that Francois spoke a
little more and then the SACS Junior school band played Bonga's two favourite
tunes - the theme music from Jurassic Park, which Bonga called "the dinosaur
music" and insisted on walking like a dinosaur whenever the band played
it, and Freddy Mercury's "We will rock you". And then Lydia (15)
said she wanted to say a few words.
She stepped in front and said: "I didn't like him at first, I didn't
want him to disturb my comfortable life and I didn't think he could ever be
like me or my brothers, that he could ever be as successful and have a normal
life, or that I could ever love him. I was prejudiced although I considered
myself open-minded. He proved me wrong and he changed me forever and made
me a better person. I would not have been the way I am now, had he not been
part of my life."
Her speech was followed by stunned silence - as
my mother in law said afterwards: "We all felt like that but none of us was
brave enough to stand up and say it in front of 150 people."
After
that I said a few words about my precious moments with Bonga - his cycling, his
hatred for vegetables, his jokes, and then we finished with Bonga's last song.
He learnt it a week or so before his accident. He came home from crèche
one day, hot and bothered, and started undressing. A few minutes later I saw
Bonga walking around the living room stark naked, waving his arms around as if
conducting an imaginary choir, and singing
to himself. He was singing
Nkosi sikelel iAfrika.
So I asked everyone to join in
singing the first verse of this song. Terrence Scarr, the SACS Junior school
teacher in charge of the band, led the singing. And everyone stood up and sang
this really lovely tune in memory of our beautiful boy.
The final
words came from Francois - he read the card Sara sent us, with a quote from The
Little Prince, where he says that he will live on one of the stars and he
will be laughing and it will be as if all the stars are laughing.
I miss him terribly, every day. Every morning I wake up with a feeling that I
haven't seen him for such a long time and I should really go to the hospital
and fetch him. When I think of him my arms hurt where I would have hugged him
and my legs hurt where he would have sat.
I suppose it will get
better one day.
Thank you all for your emails, cards and phone
calls.
21 May 2002
Dear Anna,
Bonga’s Memorial Service was a moving ceremony.
I was impressed by your daughter’s honesty. Best wishes, Don
Ashes and benches
If we want to scatter Bonga's ashes in Kirstenbosch, that's very
easy. We must fax a request a day or so before the chosen date, they will issue
a free permit and on the day we must come either early in the morning, at 8am
or one hour before closing time, i.e. at 6pm. The scattering of ashes always
takes place at the protea garden, the highest point of the garden.
With the
bench, the situation is quite ridiculous. There is a waiting list of 35 people
who want to put a bench there. The list will take four to five years to be
worked through. At present the cost of the bench is R40,000. By the time our
turn comes, it will probably be
closer to R60,000! So we decided that we
will not pursue the Kirstenbosch idea. If I had that amount of money, I'd
rather buy some equipment for Red Cross, donate it to Children of Fire or do
something else like that. But I do want to plant a tree in Bonga's
memory - if he can't grow into a man, let him grow into a tree. And I
also do want to plant it in some beautiful public space that is most unlikely
to be built up, and to put a bench there for people to keep him company.
We will now explore the Betty's Bay botanical garden option.
There is a beautiful botanical garden in Betty's Bay, part of the nature
reserve. It's not a hot tourist attraction like Kirstenbosch, but a beautiful,
very peaceful place, where baboons bring their babies to feed on berries.
About the idea of looking after Dorah if anything happened to you. I know
that she is loving. I could see it during that visit to our house and when I
saw her at the hotel last year. It's not that - I just worry about her future,
her independence, her ability to lead a "normal" life - and my ability to look
after her for the next 20 - or maybe 30 years. That's why I said I might not be
able to... It's just a doubt in my own strength, not hers!
As with Bonga, I have absolutely no doubt whatsoever, that there is a lovely person inside that damaged body - it's just that her damage is so much greater than Bonga's ever was... And as you know, she does require a lot more time than he ever did. But this is not to say that if you ask me tomorrow to take her I will actually have the guts to say “no” ... Someone must love her.
There is a foundation for near-drowners. It has a memorial page for
Bonga on:
http://www.hugsfoundation.org/
22 May 2002
Yesterday I had such a strong feeling that Bonga is around, it was unreal. I know it's all psychosomatic and that it will eventually disappear, but it doesn't really help at the moment. But strangely enough I don't feel weepy or unbearably sad - just have this empty spot somewhere inside me. I think partly this is because he suffered so terribly for ten weeks and it was such a relief to see the suffering end that the fact that he is also gone, not just the suffering, hasn't quite sunk in yet.
23 May 2002
Yesterday we went to another memorial service. Three family members have
died in almost as many weeks. It was just a small gathering at the retirement
village and the event was mercifully short. I don't really understand much when
it's all in Afrikaans. My mother-in-law seems relieved more than anything else.
As in Bonga's case, her overriding emotion was that she wanted his suffering to
end. On Sunday we will drive 450km to the Great Brak River for a church
ceremony and to scatter Hennie’s ashes over the sea.
Last night, while
I was listening to all the preaching and singing in Afrikaans, I was thinking
of Bonga and realised that although his last ten weeks were really terrible, I
remember him the way he was before.
When I think of him, I have this
image in my mind of him jumping out of Francois' hands onto our bed. They had a
little nightly going-to-bed ritual: Francois had to carry Bonga to our bed and
swing him three times, counting: "One, two three... NO!" Then he had to swing
him three more times, also counting - and on the third time Bonga would
deliberately "fall" out of Francois' hands onto the bed, giggling all the way.
And that is how he comes to my mind - giggling, arms and legs flying
about...
28 May 2002
We are going to Betty's Bay on Tuesday to talk to the curator of the botanical garden there. Unlike the Kirstenbosch management, she was quite receptive to the idea of planting a tree and having a bench - and there was no talk of R40,000 and a four year wait! She suggested that we might want to spend the money on something other than a bench and that they will then put a plaque in Bonga's memory. F and I want to bring closure to Bonga's death and as long as his ashes are at the undertakers, it won't happen.
28May 2002
No, I don't think they'll nick the plaque in Betty's Bay - at least not
immediately. In Betty's Bay houses don't have burglar bars and there is no
police station or anything like that... It is still a bit of an old-fashioned
village.
Yes, the actual doctor did apologise, but neither he, not any of the
other medical professionals who were involved in this incident, answered my
questions:
How is it possible for a non-treating doctor to override the
decisions taken by the treating doctor?
What steps are to be taken by the
hospital and UCT management to ensure that similar incidents don't happen to
mothers/patients who are less articulate and more easily intimidated?
His
answer consisted mainly of a long explanation as to why he took the decision
not to do anything with Bonga.
31 May 2002
I obviously never had to put up with the same level of prejudice with Bonga as you do with Dorah, but even in his case, the kinds of comments we got were quite astonishing. People asked me in all seriousness whether he had any future and what kind of special school we were planning to enroll him in. And when we would reply that he was going to go to SACS, the response would be met with incredulous silence - sort of, ya, sure, dream on...
3rd June 2002
Below is the English part of my step-brother in law speech at the
memorial service for his father, who died two weeks ago.
"There have
been a number of departures in a strangely short time. I think particularly of
Bonga's parents and their other three children. When bad things happen to
good people I tend to grope around for reasons. In the acceptance that there
are none, lies a strange calmness. But the synchronocity of these events leaves
me with an opportunity. We all have our own image and idea of the hereafter.
This is what I know: Not even the most hardened sceptic can, with honesty,
dismiss the awareness of a continuing presence of
those who have left us.
Perhaps there is a gathering of souls across the Styx, or at the top of
Jacob’s Ladder; I don’t know. But this I know: the amalgamation
of all our diverse memories shared with affection - is that not why we are here
today? - is enough to give
them spiritual substance. Of that substance I
have an image - of a kind old man, recently relieved of physical suffering -
meeting with a bouncy young boy similarly relieved of scars and suffering, and
that between them there is right now, the kind of understanding, acceptance and
warmth that we all should be striving much harder for on this side."
Grieving - yes, I know. Some days I feel fine, but other days I just
want to be left alone because my whole body hurts when I think about Bonga. I
think about him all the time in fact. Not consciously, but he is there all the
time. We do talk about him almost daily, but not in a sad way - one of us will
say something like - oh Bonga liked that, oh you are worse than Bonga (Nicolas
refusing to eat vegetables). Or one of us will imitate Bonga's favourite
phrases, or remember how he said or did something... So he is very much there
and not forgotten, but Lydia is just overwhelmed with grief/guilt now and then.
Both F and I feel unrelenting guilt - we took this child to give him a
better life, so the responsibility was more than you feel about your own child.
And we failed him - we didn't manage to protect him well enough and he died a
terrible, agonising death. And no
matter how many times people tell me -
and F - that it's not my fault, both he and I feel that we failed him terribly
and there is no going back to fix it.
5th June 2002
I just received a request from the Shawco seniors club in Khayelitsha.
They received a donation of some trees and want to know if they too can plant
one in Bonga's memory.
We went to Betty's Bay yesterday to talk to the curator of the botanical
garden there about maybe burying Bonga's ashes. She was as tactful and
sympathetic as it is humanly possible, but I found it really hard to talk about
it. She showed us a place that she selected
- it's a lovely peaceful corner
of the garden, next to a little pond, full of frogs. We told her that she can
select a tree that she thinks is appropriate for this spot. We will go this
Saturday hopefully, unless it rains. They will prepare the hole, put compost
in, bring the
tree in a plastic bag and a watering can and then we will be
able to put our memories there, plant the tree ourselves and water it.
We
will also put a bench there. It will stand under the tree, facing the little
pond. And there will be a little memorial plaque on the bench. It really
is the best place for him - it's peaceful, beautiful, but not a tourist trap.
It is visited by happy people, who will sit on the bench, read the plaque and
think of him too... (and the bench doesn't cost R40,000, but only R5,500, which
my mother has already sent from Montreal.)
June 10th 2002
The weekend was generally sad. We went to Betty's Bay on Saturday
morning. The weather was so-so and we worried most of the day that it would
start raining just when it's time for us to go the garden.
At five
o'clock we went to the garden and met the curator at the gates. The tree she
chose for Bonga is wild peach because it's a local tree, it's very hardy
(Betty's Bay is incredibly windy in winter) and it grows to about four
metres high. Also, unlike most other local trees, wild peach can be pruned to
give shade. It doesn't have blossoms or fruit.
We dug the hole ourselves,
then the curator put some nice smelling twigs with flowers at the bottom, we
took turns to throw soil in and planted the tree.
I was struck once again
how strange it is to see a person reduced to a box half the size of a shoe box.
(It also struck me when we went to scatter my step father-in-law's ashes over
the sea - he was such a big man - and there he was, in a box...)
The spot
is really lovely - mountain on one side, the ocean on the other, a little
pond... It is really so peaceful there.
The curator doesn’t want
people to try to bury their loved ones there so in the end, at least
metaphorically we cast his spirit into the breeze, his ashes upon the wind.
The curator told me not to worry: "because my dad is also here and he
will look after your little boy".
My mother has already sent me money for
the bench, so it should be ready sometime by the end of July, beginning of
August. The plaque will say: in loving memory of Bonga Mandla du Bois 29
September 1997 - 8 May 2002.
June 26th 2002
At every step I thought that this is the final farewell - when I
realised that he would never be the same as before, would never see me again,
never smile and never, ever make a sound, I thought that this was the
final farewell. Then when he died and the undertakers
came to the house,
put his body on a plastic tray, covered him with a plastic bag and a grey
blanket, strapped him to the tray and wheeled him out, I thought this is it,
this is the final farewell.
Then, when I went to see him the day of the
cremation and saw him - cold, grey, with specks of blood on his face and a
crudely covered cut right up to his throat, I thought that this was it, this is
the final farewell. I thought the same at the crematorium when the coffin went
down and we were given the cloth. I also thought that at the memorial service,
and then in Betty's Bay, when we took turns to put his ashes in the hole. But
there is never an end; it just carries on.
Last week we had to go to
Khayelitsha for a tree planting ceremony - I think I wrote to you about it.
SHAWCO seniors planted a tree in his memory. Then on Saturday I had to sort out
his things. I selected some clothes that he wore most - the shirt he wore for
his official portrait, his favourite warm top, his two hats, his first and his
last shoes, his favourite books, his dinosaurs, little cars... I put it all
into an old suitcase, locked it and thought to myself - that is IT - now he is
really gone. But of course he is not. His
photographs keep on cropping up
in some unexpected places, his toys, books, socks - but most of all, memories -
his phrases, his habits...
They come up all the time, they are part of our
daily life.
In October 2002 Anna took some of
Bonga’s special toys to his “cousin” in London. Another little
boy will ride his bicycle now.
Anna in the meantime keeps writing about her lost little boy and battles for others in need – Christopher, Jacques, Janine and more.