Chocolachillie

Mitchie died on Saturday. He was playing in the house and after a while his mother thought that he was too quiet. She went to check and as she couldn’t find him in the house, she ran outside. Both gates were open and she found him drowned in the pool.

The Smiths were the first parents of a child with Cerebral Palsy we met after Loren was born. I personally never spoke to them after that, but in that one visit they said such a lot of valuable things that I will never forget them. They never pretended that life with Mitchell’s problems (non-verbal and although he could walk he had serious movement issues) was easy, but their love for their two boys was clear. They are devoted Christians and they managed to juggle life with a child with Cerebral Palsy very well. I know that Mitchell attended a main stream playschool at some stage. Celeste wrote a book about their experiences and it was recently launched.

A series of small miracles, was how his mother described Mitchell’s life. So many times, they rushed to the emergency room with him. He was an enterprising young man and managed to get himself into some very dangerous situations on a couple of occasions. I.e. he was pure boy. But somehow he always pulled through. Why Saturday? How did he manage to get the gates open? Why now, after fighting for his life for such a long time? (He must have been around nine years old.) My questions and maybe even some of theirs. But it isn’t something there are answers to, is it? I just know that my heart bleeds for them.

What will I tell them, if I can?

That it is like having a limb amputated. You’ll feel it, even after it is gone.

We were entering the grocery store. Marco was pushing a cart, Magnus sat on my arm. And suddenly I reached out to find Loren’s hand so that he doesn’t get lost or doesn’t run off.

We sat in front of the fire. I’d closed the door to keep the heat in and Magnus crawled to it, standing up against it. I ran forward to haul him away from the door, because any minute now Loren was going to run through the door and knock him over.

Some blankets were left on my bed after Magnus had taken a nap. And I found myself tiptoeing to not wake Loren as the jumbled blankets turned into the shape of a sleeping child.

Mitchell had blue eyes and blond hair and when I met him he had just learned the sign for AGAIN!
Mitchell will always be loved.

I’m tired and there’s dirt under my fingernails from digging in the soil. Even though it is winter the neglected garden needed weeding. Most of the boxes have been unpacked and except for a few things (like three gilt frames, some spoons and the washing pegs) everything has been accounted for. Our stuff fits into this old house like it has been built just for us. The views from the dining room and our bedrooms are spectacular. The days are warm and I got a lot done with my mother here. The children seems calm and even though Dirk works twelve-hour days and we only see him at mealtimes, he seems cheerful and upbeat.

Ever since the books have been unpacked, one in particular has been calling me: Roadmap by Jennifer Graf Groneberg. I received it a day or so before we were due to move from the city into the countryside and despite the urgency of getting everything sorted out, I started reading it. But I couldn’t finish it, of course. When I finally did finish it, I was at a loss for words. I needed to mull it over.

I remember reading something by Jennifer back when I returned to work from maternity leave with Loren. Everything was so uncertain and I felt so deeply wounded. So, when I read about her house at the end of a gravel road in Montana where she closed the gates after getting home with the twins, something stirred inside me. And then, a couple of months later I read another column written by her and I re-read it, simply because it was so musical. I immediately searched for anything written by her and spend almost a full day reading and re-reading everything I could find. I stuffed myself with the beauty of her words and I cried like I haven’t been able to for months. I think what ultimately grabbed me, aside from the beauty of her writing was that I sensed in her the kind of peace that I knew I was lacking. An acceptance of a son whom I didn’t know I needed in my life.

Peace roams only where it is invited. And maybe Jennifer’s book is telling this story more than anything.

What was my first awareness of Down syndrome? Mythical heaven’s children – perpetually smiling. A TV program with a young actor with Down syndrome. Later a childhood friend whose first child had Down syndrome. The grandparents were devastated. At that stage this seemed a normal reaction to me. But this lovely young mother was so proud of her son’s achievements and she was such an advocate for Down syndrome that I was left with a sense of delighted surprise. What her attitude brought home to me was that a child with Down syndrome will do most things other kids do eventually. He or she may just get to it at a different pace. But I didn’t see that the parent of a child with Down syndrome also evolve along the way. That sometimes, children are far better teachers than adults. And that children are each gifted in their own way. That every child brings something to this world that this world desperately needs.

Infertility made me realize that nothing is a given. If my body could fail me at something as basic as reproduction, it could also give me a child other than the norm. And then there was my realization while pregnant with Marco that I wanted nothing to do with prenatal testing. That I would welcome my child no matter what. Though imperfect as yet, all of these things paved the way for Loren. When Loren was born, there was no doubt in my mind that I would look after him forever if necessary. That he was mine and that I wanted him with me. But, I didn’t know how to forgive myself and just enjoy my child.

“We don’t know what his intellectual capacity will be” the less-than-kindly doctor said. “He may be like a little Downs kid (sic) or he may never even recognize you or say Mama.” And I thought, I can live with Down syndrome. Please, God, let him be like a child with Down syndrome.

I wanted so desperately to be sure of something. To label. To understand. The richness of the experience of being a parent was still only half known to me. Whether Loren had Down syndrome or CP or was physically and/or intellectually disabled, didn’t matter in the end. Nobody could tell me that he’d always know me and that he would love me. Despite all the things he needed to forgive me for. Nobody could tell me that love would be the main emotion I would experience.

And then Jennifer and Jodi and all the other parents with children with Down syndrome, liver disease, Cerebral Palsy, autism and a myriad other things exploded into my life and I knew that this new life of mine was doable. Loren showed me the way, when I finally allowed him to. But there to hold my hand with shared experiences were all these parents and their wonderful, miraculous, sweet, naughty, problematic, stubborn, fighting, laughing children.

And this, for me, is the basic message of Jennifer’s book. Life is to be embraced. Children are there to be loved and if you allow them to love you right back, everything will be fine.

“Ahluvyou”

I read a few passages from the book to my mother and we sat huddled together, crying softly. We cried, I think, about forgiveness and miracles and the incredible privilege of being mothers, but mostly about the sheer beauty of it all.

Not for the first time and neither for the last time, thank you Jennifer.

I owe Laura a post to list six random things about myself.
The rules are:
*Link to the person who tagged you.
*Post the rules on your blog .
*Write six random things about yourself.
*Tag six random people at the end of your post by linking to their blogs.
*Let each person know they have been tagged by leaving a comment at their blog.
*Let your tagger know when your entry is up.At first I thought I’d post pictures, but suddenly the task seems too daunting. So, a simple listing will have to do. Here goes:

1.My toenails are usually painted. I rather like dark colours like a deep red or a rust on my toes.
2.I love cats. I think they are the most elegant creatures in the world. This, of course includes the big cats like lions, cheetahs and leopards. But I prefer to admire those from a distance, thank you.
3.I don’t have a favourite colour. That changes sometimes from moment to moment. I do prefer warmer-toned versions of colours. though.
4.Feathers fascinate me. We have a framed photograph of a collage of feathers done by one of our previous neighbours, Thomas Vermeulen and it is one of my favourite things to look at. I like paisley - which is a stylized version of feathers.
5.My hands are nicely formed – with long, slim fingers. But I love digging in the soil and I have never really had long, groomed fingernails. At the moment the condition of my hands are shocking. My sister – who always have long nails and who look after her hands particularly well -usually just shakes her head in disgust when she sees the mess my hands are in. And then she gives me a manicure. I love my sister.
6.I’m a dreamer and I often procrastinate. It’s a very bad thing.

I’m not going to tag anybody else, because I’m sure by now everybody has been tagged! But if you want to respond to this, you are welcome!

If you are the person I think you are, I want to thank you for helping somebody whom I’ve developed a great deal of respect for. If I’m not right about your identity, thanks for responding anyway.

The issue here isn’t that I deny that being a medical professional can be extremely difficult. That is why I became a librarian and not a doctor. :-)You chose medicine, knowing that you were choosing a tough field to work in. Therefore I will acknowledge your problems without feeling the need to sympathize much. No, I haven’t really worked with the general public. Also a choice I made, given my lack of patience. But I can imagine your frustrations. My hat off to you. Of course medical professionals are humans first. And I think therein lies a big part of the problem, as you would probably fully agree. Doctors are human and make human mistakes yet many people are in a disadvantaged situation intellectually dealing with doctors. This impacts on their perception of doctors and doctors’ powers. And it places so much pressure on already overworked individuals. Expectations are so high, as you rightly say. (Some doctors don’t do much to dispel the myth that doctors are always right though. Or at the very least they act extremely defensive if they are questioned. )

Look at what you are mentioning as the ideal of care:

Of course we learn and practice communication skills, wholistic health care, non-conventional medicine, patient-centered practice and a whole endless host of other things to try and do better in some of the areas you mentioned in your posting.

What you are talking about in terms of holistic and patient-based practice is not reality. It is what doctors should aspire to. I’d love to hear what you consider holistic care. I think that, whatever our respective definitions, we would agree that the time spent with the patient and getting to know the patient would impact on how well this works. Maybe where you are, in Australia, you come closer to the ideal. Certainly not here, where a GP will spend 15 minutes per patient, if that. Admittedly, some would spend more, if they feel there’s a need, but I cannot conceive of anybody who wouldn’t be unnerved by a whole waiting room full of people waiting to be seen - thus being less effective. State hospital care is even worse in terms of time. As evidenced by Anna, our childminder, going off to the state hospital once a month at 5:00 in the morning and only getting helped at 15:00 - without getting huge questions marks concerning her health adequately addressed - there is no question of holistic care..We suspect that she is diabetic. No sign of diet being addressed. Having the same first language as your patient would help. Here that is not a given as we have 11 official languages. English not being my first language, I feel at a complete disadvantage walking into a consulting room seeing somebody from a different language group. And my English isn’t bad. (English being the chosen lingua franca in South Africa. So the person I see may be Zulu-speaking and we’re both using a language different from our own.)

Look at the words you use: endeavours desire try… Striving for something does not mean this is what happens. Or even that all doctors remotely share your concerns. I hasten to add that I’m glad that you, at least, try.

I’ll admit to having an ax to grind with doctors because of their attitude towards Loren. Lunch? Mothering? Other patients? Good grief, do you think I would be this bitter, this sad if it was that? I’m talking face to face refusal and/or inability to help my child. Not being able to ever find an appointment for him with some doctors and yet easily finding one for my typical child. First thing mentioned a DNR order. How would you feel if this was your family member? Your child even?

Actually I have started looking critically at medical care and allopathic medicine long before Loren was born. 10 years ago at least. My feelings of anger and sadness about what happened is not clouding my mind about what I’ve been seeing happening for years before.

I could spend pages upon pages on debating some of the things you wrote, but I’m not going to. I’ve already written too much. If you care to continue this conversation, you are welcome to indicate that I can e-mail you and I will.

On a lighter note, I’m relieved to learn that you’re not a thief, think you’re God’s gift to humankind or operate under the influence of an inflated ego. Good for you. And yes, sorry, I was out of line with those remarks!

In a fit of lunacy, or maybe nesting, which is actually one and the same thing, ask any husband, I painted one wall of my office at work a couple of years back. Of course I didn’t want to spend money on paint and so I took the only paint I had – which is something we used to paint display boards with. The minute I started painting, however, I fell in love with the colour. And I remained firmly in love with it ever since. It is so nice, I want to eat it.

The colour is a strange bluish gray – not my thing at all ordinarily due to the fact that I prefer warm colours. Yet I perceive it as a warm colour. And teamed with chocolate brown, it looks divine.

My work here – which is slowly coming to an end – has in part been to look after very old building plans. Old by South African standards, that is. The oldest one I’m aware of is of a school built during 1865. And my favourite, which is of a building in our city, was done during the Anglo-Boer war which started in 1899. This is an artwork in itself. Beautifully drawn on linen – almost the same colour as the paint I mentioned – and meticulously watercoloured at the back to let the colour through as you hold the drawing up against the light.

I leave you with a few photographs that I’ve taken of details of the 1899 drawing. Enjoy!

P.S. I guess I’m a little sad.

A comment over at TerriblePalsy sparked some thoughts. About the practice of medicine, healthcare providers and a discerning consumer culture. I have quite a lot to say so I’m not going to edit it as thoroughly as I usually do.

I can’t speak for other countries in the world, but reading other people’s blogs I gather that things are the same, no matter where you go.

In South Africa we ostensibly have some of the best doctors in the world. South Africa was where the first heart was transplanted, because of our problems with HIV/AIDS we have done a lot of research on this particular issue and overseas doctors have told me that they come to South Africa to practice in hospitals like our local Edendale hospital because here you’ll find the most unusual diseases and build up the most knowledge. Mmmm…

Something you may not know about me is that I’m a specialist librarian. I currently work in an architecture and engineering library. But somewhere at the beginning of my career, I worked at Edendale hospital as a medical librarian. My job was to help put together a decent medical library and help out with information queries from doctors and nurses.

The medical field was very interesting. I picked up the jargon quickly. If you have an aptitude for languages, you do, for most medical terms derive from classical languages like Latin and Greek. The research part is easy if you are a trained information specialist. No rocket science there. In fact, I suspect that even rocket science isn’t rocket science if you have an aptitude for it, remains interested in it and have been trained in it.

My problem was not the subject field, but the attitude of the professionals.

All professional people have a certain attitude. Most architects are a bit arty-farty. Engineers are factual – and probably the easiest group to work with. Quantity surveyors are anal. In the best possible way. Attorneys can be difficult (sorry Dirk and Jacqui!) Town Planners are workaholics and usually very reserved. And so on.

But doctors! I could write pages upon pages of my time at Edendale, helping out at Addington and computerizing Kind Edward VIII and Wentworth medical libraries. Let me just say that I hated working with doctors.

These doctors thought they were God’s gift to mankind. They came from South Africa and most other parts of the world. Most of them could not speak their patients’ language. And when they came to ask for research, they could barely explain themselves or pronounce the conditions or diseases they were looking for in English. That was the overseas doctors. The South African doctors were just… assholian? One guy, an elderly South African, regularly visited the library. He would take the latest copy of the British Medical Journal, sit down in the most comfy armchair and promptly go to sleep with the journal draped over his face. He was a specialist and worked office hours only – in case you thought the poor guy worked nights and had no sleep. I’m not saying that these doctors weren’t good and there for the best of reasons. I’m merely saying that I often had my doubts about their efficacy- given the great divide between them and their patients and what I know of Zulu culture. And that their bedside manner probably didn’t matter, given the fact that their patients could not understand them and that their go-betweens could barely speak English too.

All of them were shameless thieves as far as books and journals are concerned. But that was the least of my worries.

So, as far as professional attitude goes, doctors tend to be a most unattractive bunch in my opinion and I had no time or interest in either fawning over them to feed their gigantic egos or becoming a world class bitch myself. Which was probably the only way to deal with them effectively. So, I was only too glad when a permanent post was created and I could once again work amongst decent people.

Let’s talk facts though. (more…)

Despite his excellent abilities and qualifications as a teacher, my father decided to farm. He first rented properties and planted crops until he could afford a farm of his own. My maternal grandmother, who loved him like her own son, cried when she saw his soft hands with the slender fingers turn into the hands of a farmer. But it was those same hands – the farmer’s hands – that held mine after Loren was born. “It was NOT you fault. Don’t you dare believe that for one moment!” he whispered fiercely.

It was thus the hands that I noticed first on the photograph. They reminded me of my father’s hands – calloused and stained with tractor oil – the hands of a man who does manual labour. But they were lifted protectively to keep the baby girl in his arms from falling forward.

“Blind father reunited with his daughter” was the caption of the newspaper article. (The Mercury 3 March 200 And I was hooked.

This father fought the authorities over getting custody of his baby girl after she was taken away from him late last year. His wife died of cancer in November, leaving him the sole custodian of their baby girl and his wife’s older children. Despite the fact that he had not only been nursing his sick wife, but has also been the primary caregiver of all the children for a while, the children were removed from his care by social workers and placed with his sister-in-law. They claimed that he would be unable to look after the children by himself and that he would not be able to support them on his meager salary.

Some time last week, the courts awarded him custody of his daughter. The man said that the older children could decide for themselves whether they wanted to stay with him or not, but that he knew he was capable of supporting his daughter financially and taking care of her. He has since remarried.

There is nothing as leveling as moving. I’ve been lucky in that I had to move once as a child and only a few times as an adult.

I often joke that I would like to get rid of all my possessions to the point where everything fits into one suitcase and travel the world. But, in truth, I would find that way too unsettling. I need my things around me. I need space. I need a home. I hate that moment when my things are packed into the moving van and I have no place to sit down and have a cup of tea. No home.

This past week-end we visited Dirk’s new partner in Estcourt – the little town he proposes to start working in on 2 May. The idea was for Dirk to travel the 50 minutes there and back every day. But we soon realized that it would not be easy and furthermore that he would not be able to do it forever. We were merely postponing the inevitable. So, we took the plunge, had a look at a rental property and decided to relocate there at the end of April.

I saw a rental agent yesterday – a nice guy who’s already handling our other property. He walked through our house and gave me his honest opinion. “Charming and rustic farmhouse with city amenities. A bit small, lacking a second inside entertainment area, but compensating for it with various undercover outside entertainment areas. Nice pool, bedrooms accessible from the outside, showers.” Things people tend to like. No doubt there would be people who’d absolutely hate it, but I know that there will also be people who’d fall in head-over-heels in love with it at first glance. Like we did. The problem with a slightly upmarket rental property is that it becomes cost-ineffective for the owner. But selling it at this point would be stupid.

The house we are moving to in Estcourt seems adequate for our needs. The yard is fenced. It is in a cul-de-sac. It faces away from the cold winds coming from the mountains, hides behind a hill. It has a fireplace. It is in a mock-Spanish style – a style that I feel do NOT belong in South Africa; thus making my objection intellectual in nature - but its location makes that aspect of it rather charming. (I’m thinking bougainvilleas, pelargoniums etc. One of my colleagues says I should henceforth call it our hacienda!)It unfortunately also has wall-to-wall carpets past their sell-by date and bathtubs in a questionable shade of pumpkin. But, hey, if you have to say one thing about me it would be that I like a challenge! I know that I can make it look nice and I’m sure we’ll be happy there. My first impression of it was favourable and I trust that.

One salary. Ouch. Since we were married I’ve been used to earning an income. It isn’t going to be easy doing without – even if it is only for a while. But I also feel that the kids need me at home right now.

We are moving closer to the Drakensberg – in fact the town overlooks the Drakensberg to the west. So there is plenty of cheap entertainment available. Driving for 30 minutes brings you to arguably one of the most beautiful places in South Africa where there are plenty of free day-walks, trout-fishing, bird-watching and many other lovely things to do and see. There is only one fast-food place being built in town and two small supermarkets. There is no real need to spend money, as long as we have food on the table. And we will have food on the table even if I have to start a vegetable garden!

We won’t be able to afford a maid or a gardener. I don’t mind cleaning and gardening but I’m not so fond of washing and ironing. Oh well, I guess compensation comes in the form of two bright faces that I no longer have to kiss goodbye every morning…

Leaving memories behind is somewhat more difficult. There is the little grave. And I feel as if my heart would break thinking of leaving the place he was born and where he died. But considering that we have been surviving for almost a year now in a world without Loren, this is just one more hurt to face and live with. Just as I had to accept that he resides no longer in that body with its restrictions, I have to accept that there is no part of him bound to a geographical place. He goes with us, in our hearts. Always.

While we were students, one of our friend’s friends, Tanya, went shopping for a pair of high-heeled shoes for a dinner-dance.

She located a shoe on one of the shelves in the clothing shop that she rather liked, but couldn’t find it in her size. So, finding nobody nearby who could help, Tanya walked over to a salesperson standing behind a counter. Upon her request for help the lady asked where she found the shoes.

Without bothering to look behind her, Tanya took the shoe by its toe and used it to point; “over there”, not noticing that an elderly lady had walked up to the counter and was standing right behind her. She hit the poor woman with the sharp heel of the shoe right between her eyes. Shocked she saw how the lady turned blood red in anger and how the point where the heel hit her stayed white so that she resembled a red parakeet with a white dot on its forehead. This looked so funny, that Tanya dived into the closest rack of clothing, pulled the clothes over her head and started laughing hysterically.

Knowing Tanya, she would have emerged at some point to apologize profusely, but it is probably better that we don’t know how the rest of the encounter went.