Burglar in the storeroom

The crime situation in South Africa remains a huge problem – despite protestations from Government officials that crime is decreasing. The worrying thing about it is that violent crimes are a daily occurance.

Just this past week, in a quiet neighbourhood of our city, a couple’s house was burgled. They were tied up and after the thieves had taken what they wanted, they proceeded to torture the couple for three hours by scalding them with boiling water, pinching them with pliers and suffocating them with plastic bags. The thieves only left when they feigned death.

My sister, in a different part of the country, has been the victim of crime directly and indirectly a couple of times.

Friends of my sister’s were abducted from their gate after returning home late at night. The husband was shot dead and the wife and child left somewhere next to the road. The mother heard two shots and believed both her husband and child to be dead. Their neighbourhood – a normally peaceful suburb – seems to be targeted by thugs. A couple of months ago all the dogs in the neigbourhood (also their own darling mutt, Minki) were poisoned and their neighbour’s house burgled.

Two weeks ago, one evening late, my brother-in-law was entertaining a visitor in their lounge. My sister, Hannelize, had excused herself and went to put her two-year-old little girl, Legan, in bed. She was tired and fell asleep next to Legan on the double bed in their bedroom. Thieves broke in, moved stealthily past the entertainment area and entered the room where Hannelize and Legan were sleeping. They took the pistol from the bed – Hannelize and Rupert, being aware of the problems never goes to bed without it – took Hannelize’s jewelery from the bedside pedestal as well as her cellphone. And then they left – just as quietly as they came.

My sister describes her feeling of utter terror when she realized that a man who meant them harm must have been standing next to her child with a loaded pistol in his hand. Thank God they did not wake up or he might have shot them out of fear.

Our own neighbourhood has had a spate of break-ins. A community policing forum was formed and now we have guards patrolling the area from 18:00 – 6:00. The guards are not armed, but they have radio contact with their headquarters and can sound an alarm which calls out armed guards as well as notify a nearby police station. They have had a few successes where they were able to foil break-ins, but criminal activity is still more than usual.

No wonder that we nearly jumped out of our skins when our own alarm went of in the middle of Saturday night. The control panel indicated that it was our storeroom outside where the alarm had been triggered. We waited for the alarm company to phone and check that everything’s fine. When they did not, Dirk went to see. From the children’s bedroom one has a view of the storeroom which is in a separate building together with the laundry. We could not see anything moving, so we assumed that a gecko had been the culprit. We set the alarm and went back to sleep. Only to be woken by die alarm again a few hours later. When the alarm company did not phone once more, Dirk phoned them and was told that they are not receiving a radio signal from us. A faulty radio, groovy! Dirk decided to go out and check. He walked round the building with me watching him, his .38 Special in his hand, could find no signs of a break-in and came back.

The mystery was cleared up the next morning when Dirk wanted to treat all the animals with flea potion and could not find our third cat, Steffi. We had an AHA moment. Alarm. Missing cat. Storeroom. And sure, when we opened the door of the storeroom, a very relieved Steffi ran out, loudly admonishing us for locking her in.

This is an amusing story, but the problem is that we are living in fear, without even begin consciously aware of it. It is amazing how quickly the human mind adapts. Until that day when you lose someone near and dear to you. No wonder many South Africans are moving to other countries, despite having to settle for less space, poor weather and separation from their family and roots.

Choice choice choice

I’ve just received this from one of our support groups and it was too good not to share.

We have often been critizised for choosing to put Loren on a ventilator – thereby saving a life that other people consider as having no quality. This letter redefines quality of life as seen by somebody in a terminally ill and disabled body. I know Loren is unable to choose life or death at this point – at least consciously. While I do not for one moment propose that Loren feels the same way as this man – Loren is only 15 months old, after all – I do sense in him the same will to live, the same interest in things around him and the same ability to feel and respond to the world. I have tons of hope for him, besides loving him more than life itself. And that is why I have chosen and will choose life for him – every time.

Los Angeles Times – Thursday, May 16, 1996 – METRO SECTION – page D-9

“Choosing Life, Even on a Ventilator” …..By ROBERT C. HORN III

In the national debate on doctor-assisted suicide, we have heard from judges and lawyers, doctors and clergymen, ethicists and editorial writers, politicians and pundits. The one group conspicuously absent so far from the discussion is the one most affected by its outcome: the terminally ill.

I am one of the terminally ill. In 1988, I was diagnosed as having
amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s Disease. ALS is a degenerative neuromuscular disease that swiftly robs the victim of voluntary muscle control, including those necessary for breathing. The average life expectancy after diagnosis is two to four years. ALS does not affect the mind, so one is perfectly aware of his or her physical deterioration. By the end, the individual typically is unable to move, talk above a whisper, eat without choking or breathe without difficulty.

ALS is a terminal disease. It is progressive, unrelenting, merciless. Its endgame is inevitable. Shouldn’t a person faced with such prospects have the legal right to choose whether to go on with life or end it with dignity? ALS victim Dennis Kaye, in his book “Laugh, I Thought I’d Die,” writes that he does not want to go on a ventilator when it becomes necessary. Why should he have to? In “This Far and No More,” another book about a personal struggle with ALS, Emily Bauer (a pseudonym) poignantly
wrote in her diary: “I don’t know how anyone with access to a normal life can expect me to accept such a limited one. That others have accepted a drastically limited life does not mean that is the right course of action for me.” Who has the right to tell Emily that she doesn’t have a choice?

Life is about making decisions and choices. For the terminally ill, those choices should include when to die. This doesn’t mean choice by doctors or family members or ministers or counselors or any person except the patient himself. Others can and should be consulted, but the decision must be up to–in the words of the U.S. Ninth Circuit Court of Appeals–the “mentally competent adult” patient.

But the right to choose death necessarily must include the right to choose life. I was faced with that choice in February 1991. In less than three years, I had gone from a robust, physically active person to being completely disabled. I could barely squeeze out a sound, had lost more than a third of my body weight because I had trouble swallowing even mushy foods, was almost totally paralyzed and my breathing had become very labored. What to do?

I am fortunate in that I had a real choice. Two doctors separately offered me the option of ending my life painlessly. I didn’t choose that option, but I deeply appreciate their compassion. I made a conscious decision to go on a ventilator and on with my life. I talked it over with several people close to me, especially my wife, who would take on the additional role of caregiver. But I alone made the decision. I chose life.

After five years of being tethered to a ventilator, “eating” via a tube in my stomach, “talking” with my eyebrows and operating the computer with my foot, did I make the right choice? You bet! What I have left is more valuable than what I have lost. The things I can do are more important than those that I can’t. There is much more to life than physical ability. I am still a vibrant, healthy and independent person mentally, emotionally and
spiritually. I can think, reason and analyze, remember, read, write, learn and communicate. I can love, feel happiness and sadness, be enthusiastic, get angry, feel joy. I can believe, hope and have faith. That adds up to an extensive list of things I can still “do” in spite of my disease.

Although I made the right decision for me, that is not to say that my choice would be appropriate for everyone. The personal struggles of people against life-threatening illnesses do not lend themselves to facile judgments. These are highly individual battles that depend on many factors, from personal outlook and philosophy to the specific circumstances and, significantly, to the nature of the illness itself. For instance, in ALS,
the symptoms vary dramatically from patient to patient; one person’s experience is no guide to someone else’s.

That said, I still would like to talk to those people who are seeking to end their lives–and would have liked to talk to those who did. What would I say? I would simply tell them that there is life on a ventilator. I have found that despite the difficult conditions of disability and terminal illness, life can be meaningful, productive, fulfilling, rewarding and valuable. I defend their right to die, but I also affirm their right to live.

For me, having a choice is the key. No one forced me to live. No one forced me to die. I chose. Because of that, I can cope with the negatives and “downs” as well as relish the positives and “ups” that my life presents. Choice makes all the difference; it’s as simple and as complicated as that.

My hero

We had a very busy week-end. Anna’s back at work and on Saturday she came in so that I could train her on the new ABR exercises – she normally does not work week-ends. She seems fine and does not want talk much about her horrible experience. (She was in ICU with pneumonia for more than a month and on a ventilator for a big chunk of that time.) She just quietly said that after being suctioned by the nurses every day she resolved “never to suction my baby (Loren) in his throat again – it hurts too much.”

The painter came in on Saturday and painted the children’s room. Of course we had to unpack all their shelves and Marco had a field day – discovering toys he’d forgotten about ages ago. He got hold of some green watercolour powder paint and mixed that into his playdough – what a mess! He looked like a Martian himself and had to laugh when we showed him his face in the mirror. The house was in a shambles and it took most of Sunday to clear everything again.

By yesterday afternoon we’d had enough. We had both been running up and down all day and Marco did everything wrong he could think of – including putting bubble mixture into the pond with the poor fish. We had to try and save the fish by letting some water out and replacing it with clean water.

Dirk did the lion’s share while I concentrated on the kids and fixing lunch. But we were so tired and hot and irritable by this time that we knew we had to call it a day.

So we first had a swim – it was 38 degrees Celsius in the shade. And then we got in the car and took the children to a nursery with play equipment, chickens and birds. This kept both of them happy and entertained while we could sit back and enjoy a cold drink. Loren adores birds and he was happily watching them while his brother went down the slides and messed around in the sand box.

By the time we needed to leave – the nursery was closing – Marco had resolved to stay there forever and we had to pretend that we were going to leave without him before he would follow us to the car. He was dog tired and grumpy and cried because we would not let him buy sweets, because he wanted to be picked up, because he wanted to be put down, because he wanted to get in the car himself and because he was too small to get in the car by himself.

At home I unceremoniously dumped both in a bath and that seemed to cool the frayed tempers a bit. Marco was being entertained by a video in the family room, Loren was in his bedroom and I had just fetched something from the kitchen when I heard Dirk shout a few choice cuss words. He was on his way back up the few steps leading to our bedroom when he met a snake going down the steps. All the doors were open and the snake must have thought our house looked like a cool haven compared to outside. It could also be that it had some encouragement from Lisa, the Birman cat, who was lounging on the floor nearby. (It would not be the first time that she brought snakes into the house – but hey, innocent unless proven guilty…)

My first reaction was going to Loren and picking him up, then shouting out a warning to Marco who came running to see what was going on. In the meantime, Dirk and the snake were watching each other, the snake coiled on one of the steps and not moving. Dirk was stuck in our bedroom unless he could move the snake.

A somewhat animated debate followed. Dirk wanted me to bring him the swimming pool cleaning net. I pointed out that it has an awfully short handle and asked how he proposed keeping the snake inside once he’d caught it…He asked for the broom instead. I suggested to him trying to sweep it outside. Dirk felt killing it would be a better choice. Marco chose this very moment to become difficult over me not wanting to rewind the video RIGHT THIS INSTANT and I walked him to his room where I told him to stay WITHOUT MOVING. Dirk took the proffered broom gratefully (the snake was between him and his dinner) and tried pinning the snake under it, but it moved, lightning fast and he had to kill it with the hard side of the broom.

I always feel sorry about things like this. We don’t know enough about snakes to distinguish which of them are truly harmless and which are poisonous. I know that a bite from even the relatively harmless red-lipped snakes will land you with at least a bad headache. But I also have to admit that I fear them and will run away rather than stick around and decipher what kind of snake it is.

I’m very grateful that it was Dirk and not me or Marco who met the snake face to face. But I was amused when Dirk went to sleep with Marco in his bed last night – sheepishly admitting that he was scared that some of the snake’s relatives were still hidden under our bed.

My hero.

Another day in Paradise?

Yesterday I traded lunch and the sweet company of my children for a somewhat necessary visit to the Mall. I stifled my feelings of guilt with the memory of the unexpected trip home I had to make mid-morning to go and reassure a hysterical Mavis that Loren’s feeding tube is NOT coming out, merely loosened. Marco kept beaming:
“Glad to see you…glad to see you.”
And Loren’s round blue eyes became rounder and bluer when he saw me. Ahhh, it is nice to be loved! It made the fruitless trip home worth it.

Going to the Mall at least got me out of the work-home-work routine. Man do I ever need a break! But I dreaded it at the same time, knowing I was going to spend money we don’t really have. Due to a couple of unforeseen things, Dirk’s account is in the red and mine’s empty – something we fortunately rarely face.

I bought charcoal for Loren in the hope that we could sort out his gas-ridden tummy (and increase our sleep time at night from two hours to at least, dunno, five or six? – I’m not ambitious) and some prenatal vitamins for myself.

Then on to a chain-store to find an inexpensive but special gift for a friend. Possible, I know, but I’m not a natural gift giver. I found some ice cube trays in the shape of fruit. Maybe not special, but I’m sure she’ll settle for cute.. I then remembered that my make-up base is down to where it needs to be scraped out with my pinky and that I had had a mishap – dropping my only fairly decent powder eyeshadow compact on the floor and watching it smash into tiny flecks of colour. I could not afford to replace the whole thing, but I bought the smallest, least expensive version of one colour that I use a lot. Look, I must have make-up! I firmly believe that a new shade of lipstick can change my life and being proved wrong a few hundred times, has not budged that belief in the least.

My watch battery needed replacing, so I trundled off to a jeweler and stood marveling at their exceedingly ugly, but horrendously expensive jewelery. Walking out of the Mall to my parked car, I thought to myself that I just spent R300.00 – without much to show for it. And with the exception of the health store purchases, all of the things I bought could be considered luxuries. I felt a bit guilty and slightly depressed.

As I drove back to work I passed a line of people waiting for government grant payouts. It was drizzling slightly and they were standing mutely with their heads lowered, some with umbrellas but most without. A woman was crossing the road – an infant strapped to her back and supporting an older child on wooden crutches. The child looked disabled in some way, rather than just sporting a temporary injury and they moved so slow that they got caught by the traffic light changing. They were clearly also on their way to the line of grant recipients. The woman looked too old to be their mother – a grandmother maybe?

This is the reality of life in a third-world country riddled by AIDS. The mother and father are possibly both sick or dead or working far from home and kids are being looked after by grannies who neither have the resources nor the health to support them.

My car radio was tuned in to a local station. The Minister of Finance had just delivered his budget speech in Parliament the day before and a panel was discussing various aspects of it. Even though the country has had a surplus this year and income tax relief were proposed, most of the panelists felt that by reducing VAT, the government could have gone a long way in improving the lives of people who really need the relief. Most of these people earn too little to pay income tax anyway. And many of them are without work.

Then the subject of disability grants came up. It was increased by a whopping R50 – from R820 to R870. Taking into account that extended families are often dependant on this grant, it means a whole family has to pay for housing, food, school fees and buy equipment for the disabled person with that R870. This is pretty much impossible.

Most people’s staple food is “putu” – a crumbly porridge made of coarsely grounded corn (mealie meal). If they are lucky, they can afford some vegetables or cans of fish or even legumes to eat with the putu. A 50kg bag of mealie meal costs around R180.

People often live in shacks – houses made of tin, cardboard and pilfered materials found everywhere. No water except maybe a communal tap some distance from the house and no sewer system. No electricity. And a great many others live in simple one or two-bedroomed houses. This is not true of everybody – there is a reasonably comfortable middle-class comprising of people of all colours and then there are the very very rich. The gap between those with “enough” and those who have nothing is very wide and getting wider every day.

This is not only true of black South Africans. I know a white family (one of many) that go to the same church as us who really battle. The husband works, but his drinking habit squanders most of their money. His wife walks everywhere she needs to be. In South Africa public transport is dicey and walking is actually dangerous. She is on the church’s hospital team and every Thursday she starts walking from one end of the city to the other to visit sick people in hospitals. She is a good woman and is always there when people need her. She picks up small change dropped on the pavement and puts that in a jar, she crushes tins and sells them. Anything for an extra few cents.

My troubles are nothing compared to many South Africans. I “help” by employing three people at double the salaries they would get elsewhere. But, they help us more than we help them. And their services are worth three times what we can afford to pay them.

So, it does not help me to sit back and count my blessings. It is the same as looking at people with a disabled child and saying: “I’m so blessed. Thank God that’s not me.” Now I’m the recipient of people saying that and I want to shake them awake and tell them that not even being alive is a certainty.

I feel, and have been feeling for a long time, the need to make a difference in the lives of people. I pray that I will be shown the way. That my natural bashfulness and pride and cowardice do not stand in the way of something obvious I could be and should be doing.

Faith like potatoes

A recent South African film, “Faith like potatoes” deals with the real-life story of farmer Angus Buchan, who, together with his wife and kids sold up and moved from Zambia to South Africa in the 1970s when Zambia’s economy collapsed.

With virtually nothing to their names, they lived in a trailer on the farm, Shalom, near Greytown in the picturesque but wild Kwa-Zulu Natal midlands close to where we live.
Angus worked like a man possessed to built a new life for him and his family and to pay off debt, but at the end of two years -financially much more secure – he felt empty and his life devoid of meaning. He was suffering from serious depression. A chance visit to a small laymen-run Methodist church, led to him giving his life to Christ and from then on he lived with the mission to do God’s will.

At first he was unable to speak Zulu – the indigenous language – and many misunderstandings occurred between him and his Zulu workers. But Angus found common ground and friends among the Zulus and over the course of years worked tirelessly to improve the lives of people in his community. When the AIDS pandemic broke out, he started an orphanage on the farm where children who became the victims of AIDS could come to live and learn. During the last 10 years he has been traveling Africa with a huge yellow truck, spreading the gospel to unreached areas. The miracle is that Angus has been able to fund all of this by himself, using the proceeds of his farm. Things just always seem to miraculously “come together” for Angus.

The theme of the movie is taken from Angus’ vision to get together as many people as possible to pray for South Africa during one of the worst droughts in its history. He almost filled a huge rugby stadium and told everybody that he means to plant a crop of potatoes to prove that he believes God will provide during the drought. He was ridiculed by his neighbours. Potatoes are difficult things to plant at the best of times and very expensive. If he failed, he stood the chance of losing everything he owned.

Potatoes grow underground and the farmer cannot judge how they are doing beforehand. Not until they are ready to be harvested. At the time of harvest Angus and his friend Simon Bhengu take a fork and open the ground with trepidation. What they see, make them dance with joy: Huge healthy potatoes – a bumper crop. God provided.

Faith is likened to potatoes. You have to trust blindly because you are unable to see the rewards you are about to reap.

Last night Loren had a very bad night. I do not exaggerate if I say that we spent only two hours asleep. The rest of the time I was busy trying to get him comfortable, walking up and down, letting gas bubbles escape through the PEG and praying that he will finally fall asleep.

I was thinking about the movie and I realized that having Loren is learning to trust blindly. The truth is that we do not know many things about his life ahead of time. Doctors cannot tell us with certainty what his life span will be, what his quality of life is going to end up being and whether he will ever walk or talk. All they can do is look at the worst possible scenario in order not to create “false hope” with us.

From the beginning, I decided to trust God that He will provide for us the best possible outcome for our lives. I believe that God can heal Loren in an instant. I believe he is busy healing Loren. This little boy is supposed to have 25% brain function. If that is true, he has already done more with his 25% than most people do with their 100%. I know he is bright, I can see it in his eyes and I will do what I can to enable him to share that with the world. Ultimately my efforts will come to naught if I don’t trust God to bring them to fruition.

Being tired and facing so many setbacks on a professional as well as personal level during the past months, tests my faith. Believe me. There are times when helpless tears run down my cheeks and when I feel that I cannot go on.

But the truth is that faith implies not knowing for sure and yet not losing hope. I take blind steps in the only direction I’m sure to be caught should I stumble. And that is all I have. Yet, that is enough for me.

How far is too far

Most people will probably agree that there’s wisdom in thinking before speaking, weighing words and using them sparingly.

I find that my Afrikaans blog has turned out to be somewhat vanilla-flavoured, though. It’s not that I lie or don’t speak my mind. As a matter of course I tend to err on the side of caution. I weigh my words. I sometimes read whole posts and decide not to post them. I tend to do that here as well, but to a lesser degree.

I suppose it depends on what one wants to achieve with blogging. It is certainly a creative and psychological outlet. But it is also a means to communicate about disability and Christianity – both of which can be harmed by other people’s perceptions of the writer of the blog.

For instance. The question of vaccinations came up on one of the support groups and I answered that I decided to hold off vaccinations for Loren because of brain-injured children being extremely vulnerable. Also that I did not give Marco the MMR vaccination. Given what I know now, I would choose not to vaccincate Marco at all either, but rather use the homeopathic alternative.

Some countries and states have stringent legislation about vaccinations. A perfect solution would be to say that my decision is based on religious views, but I really don’t feel comfortable with doing that. Because religion has nothing to do with my decision. When people questioned me about vaccinations
– usually during the completion of hospital forms when Loren ended up being hospitalized, I merely answered “No, he has not had vaccinations” in such a tone of voice, that it clearly discouraged any questions. Nobody has ever pressed me for an answer, but if they ever do it depends on how they ask. My response would range from a simple explanation to “none of your business.” I’m not advocating not vaccinating as a choice for everyone, I’m making an informed decision based on what I feel is correct for my family. And I fully acknowledge that I may be wrong. What I don’t want is to have Christianity labled as a religion for a bunch of loonies who place their children and those of others in danger.

I only dance naked in the moonshine in our street once a month when the moon’s full and feed my dogs the bones of some nuns that were buried on our property only as a once-a-year treat (remind me to tell you that grisly story). I am not extreme nor do I differ much from any other mother. Mostly, my blogs reflect that. I do have strong views on some subjects, but I acknowledge that other people may feel different and I respect them for their views.

I have felt that I can express my own views on this blog and that I would find people willing to read even though they may not agree. Who, if they disagree, will disagree in a respectful and kind tone of voice – encouraging debate and further deliberation.

I don’t feel that comfortable on my other blog and it is starting to bug me.

It’s a question of culture, too. Afrikaans people are usually very well-mannered (read pain in the backside, sometimes!) and have been brought up in a strict Calvinistic manner where “children are seen and not heard.” I remember what an issue it turned out to be when I chose at 18 years of age not to follow my parents to a new church they joined. And even though youngsters are different today, this is still the prevailing attitude. People don’t really comment on my blog even though the stats reflect that it is widely read. They are almost afraid to express their own view or they think it polite not to comment – I don’t know. English speakers – even South African English speakers are different.

I restrain myself thinking that I might cause offense. Or something. Maybe it is because it is daunting to know that some people who publicly dragged my name and those of my parents through the mud are reading my Afrikaans blog – certainly not on my invitation. They are just waiting to pounce on any ammunition they may find to execute me. Or maybe that is just my perception…And in such a case – should I really care?

My question to you is: Should I add some chock chips or even a dash of pepper over there? How much restraint do you exercise when you write? Do you ever find yourself retracting posts? Biting your nails after you clicked the publish button?

Prenatal testing continued

I didn’t tell you how things went with the visit to the OB, did I?

We ended up argumenting about everything for the majority of the appointment. I am fine with professionals expressing a view and making recommendations. I’m not fine with professionals dishing up generalities and pawning them off as gospel truth. And when I get the impression I’m being emotionally blackmailed, I’m SO outta there.

In the end, after one particularly straw mannish argument from the doctor, I said that my children need me in the waiting room (they were both crying) and that I’m really not going to spend more time on pointless arguments. Thanks for his time (as if he wasn’t getting paid for it) and goodbye. I got up and left Dirk to conclude the interview.

The doctor really tried to pawn us off onto any other doctor he could think of. But for his sins, Dirk ended up liking him a lot. And Dirk is every bit as stubborn as me. He turned out to be a nice enough man, despite the fact that his opinion has probably never before been questioned in quite the same way and despite the fact that he got really angry a couple of times.

Now he knows my views about everything and he will not get permission from me to do either a routine ultrasound scan or an elective C-section unless there is a good reason for it. Being an obstetric risk to the doctor because of a prior C-Section and vaginal tears, just does not cut it with me. If Dirk wants to veto my choices, he’s most welcome, as I said before.

The good doc declined to do an ultrasound scan as he said I have to agree to it. He measured my fundus and found it spot-on for the dates – as I already knew, having measured it myself. He weighed me and proceeded to write the weight down incorrectly. Dirk corrected him. There goes my only chance to actually seem to lose weight during pregnancy. And that was that.

I’d say the way things are going I’m headed for an elective C-section. This is most definitely not what I want. I’d even prefer to go into labour naturally and THEN have the C-section as neither of my babies have been overdue, but…As long as my baby is fine and is not separated from me after birth, I can go home as soon as I feel fit enough to do so and my other two children end up with the same level of care from their father that they are used to from me, I can make peace with it.

The hospital that this doctor’s patients go to seemed fine. We met a lovely hospital midwife who seemed more in tune with what I’m thinking. Tears? “They happen.” Big babies? “We’ve just had a 4.6kg baby naturally and both mother and baby are fine.”

The difference between the two? The doctor is more likely to get sued than the midwife. Sad but true. And on the basis of this some questionable and possibly harmful practices take place daily.

What do I believe?

Photos on new page

I’ve added two new pages at the top

ABR
and
Results (embedded in ABR)

with photos of our latest assessment.

My little fighter

Yesterday, on Valentine’s day, was Marco’s third birthday.

I managed to put in leave at the last minute – thank goodness for an understanding boss. And I resolved to make it “his day”.

Everything worked out beautifully.

He opened his gifts and we went for a long hand-in-hand walk through the neigbourhood first thing in the morning. We talked and explored and sat in the shade of some trees for a while. Marco made me chase him home. Loren had an OT session while Marco took his nap. After the OT left I finally managed to finish off a new duvet with press studs during the remainder of Marco’s nap. He woke up, we had lunch and then we went off to pick up three young friends and their mother for a visit to a nursery with a jungle gym. The kids thoroughly enjoyed themselves, had milkshakes (“Strawbelly, please!”) and I saw the ever cautious Marco spreading his wings a bit and take some risks on the play-equipment.

When we arrived home, we had a swim. In the last weeks Marco has finally allowed us to put some inflatable armbands on him and he is really enjoying the freedom they give him in the pool. We were interrupted by Michelle, his godmother, arriving with a gift and we had tea with her. Marco blew out the candles on the cake I had valiantly tried to decorate to look like a tiger and we ate cake. (A big prize to anyone who recognized it as a tiger, before I mentioned it…)

Dad arrived home and we spent the evening cuddled together – reluctant to let the day end. Marco fell asleep in his father’s arms.

Of course I thought back to his birth, three years ago. He was born at 00:55 in the morning by C-section after a long labour. I was surprised at him being a boy. Somehow I thought I was expecting a girl. I remember the recognition I felt at seeing him for the first time: “Oh, so this is you. Yes, of course, this is you!”

And then they took him away for a few hours – because of hospital policy. A woman had dropped her baby from the high hospital bed a few months ago after having a C-section and the hospital decided that it was “unsafe” to leave the babies in the room with a mother. I was missing him terribly and could not sleep, but was too afraid to ask for him and demand that he be left with me. When they finally brought him back, I refused to let him leave my arms again. It turned out to be the first time I could not manage to protect him against stupidity. Not the last unfortunately, especially not my own stupidity. And ironically, separation was one of the things I tried to protect his brother against, leading to a 35 day separation…

I was comfortable with looking after him from the start. We are a team, him and I. He craves touch and sometimes that is the only way we manage to weather storms – locked in each other’s arms. We’ve come a long way.

He is stubborn and has a hot temper. The plus sides of these characteristics are determination and spunk. I hope the positives will become more dominant with maturity.

I don’t know the twists and turns he will have to navigate and I don’t know what ups and downs he will experience either. One day he will make his own decisions and I will have to let him make his own mistakes. But I hope that he will always know that I’m there for him – praying, hoping and helping where my help is required.

Oh so beige…

We are now the proud owners of a passage painted in “Pale Straw”. When we had to choose new colours for the internal walls (outside is face-brick), we decided to go for the trendy non-colour colours. They have names like Cloves, Hessian, Toast and Boring Beige…no sorry, actually Barely Beige…just checking if you’re paying attention! But in fact, that’s what they are: Boring. Boooring! And definitely beige.

So we had a few of them brushed out on squares and, like two fools, we were holding them up against the wall and squinting at them in different kinds of light. As if we would actually care, in a number of years, exactly which tastefully bland colour we chose.
“I don’t see the difference between these two,” Dirk mumbled.
“The one has more yellow in it and the other one more brown.”
Sigh. “Whatever!”

So it seems a beige life is what we aspire to.

There are times I when I see two little boys the same ages as mine, running and laughing together and feel our “otherness” keenly. But truth is, for a big part of this year, we have waged a war. Most of the battles consisted of keeping Loren alive, staying sane and together and not letting Marco suffer. In war-time you don’t care about image or about what could have been. You care about being around to see the sun rise the next morning. Fortunately the battles have become easier to fight and less frequent.

But then you get a night like Saturday night. Loren hasn’t taken to the new nanny very well and something we gave him didn’t agree with him. He has been colicy and tearful all week, but it reached a crescendo on Saturday night. He was writhing and moaning and, at times, screaming in pain. When I put him down, he would hyper-extend and stop breathing. So my only choice was pacing up and down with him in my arms, letting air bubbles escape through the PEG, trying to fight my own emotions and deadly tiredness, giving him medication for cramps and gas. And pacing some more, trying not to let him hyper-extend out of my arms. We finally slept fitfully between 3:00 and 5:00 with me holding him on my chest.

On Saturday night I fought all the old battles again– the ones I thought I had won ages ago. I faced the anger, the self-recrimination, the questions to and pleas for help from God, the fear about the future. And I cried together with my hurt child – sometimes howling like a hurt child myself – surprised at the human capacity for suffering as we both just kept going on.

I feared last night as we didn’t have a particularly good day either. But Loren fell asleep on my chest and I carried him to bed – his soft warm weight against me and his fragrant red baby curls catching the soft light. And there he slept all night long – peacefully.

I’m going to splash out on towels – deep vibrant orange and spring green. I’ll put our most colourful paintings against the neutral walls and cover the floors with oriental rugs in rich hues.

Because I don’t really want a beige life.