Which turned out to be the train…and then not.

I’m going to do something very unusual for me. You know how I tend to knock all medical staff? You know how much bitterness and anger I harbour against some medical professionals?

Well, last night I felt tempted to explode. We’d thought that everything was sorted bar finding a backup OB. So we duly made an appointment and went to see the good doc. First I had to have a scan – which normally sets me on edge. But knowing that the doctor would probably be more reluctant to take me on at this late stage should I refuse, I agreed. And would you know it: Breech again! (Everything else looked fine – for what it’s worth.)

Now, if it was just me thinking the baby was vertex before, I would have seriously started doubting my own sanity. But the midwife also confirmed the baby to be head-down when I went to her roughly a week ago. Besides. Whatever anybody says: No child can hiccough through its bum. And I did feel hiccoughs consistently low in my pelvis. So I knew the moment of “flipping” – a big wave-like movement that had me almost feeling sea-sick – to be in the car as we were driving to the appointment. Last night – hiccoughs down low and kicks in the upper right quadrant of my tummy again and as I’m sitting here typing, a hard little head up against my ribs. In other words: I’m just a huge playground for this little joker at the moment! Grrrr. I think the “culprit” is my own body with lax muscles and a stretched uterus and plenty of amniotic fluid, though. There’s too much space.

Of course the doc flipped. He said c-section immediately. And the next thing he said was: Huge insurance risk. I pertinently asked: So, you are not worried about what’s best for baby, you’re just worried about your insurance? And he answered: Absolutely!

At least he’s honest…

Then he proceeded to tell me that c/sections weren’t painful and carry no risk. Firstly I’d love to do a c/section on him and then ask him if he still thinks they are painless (and make him care for a toddler and a newborn to boot) and then I’d love to set a couple of parents I got to know whose children were damaged by c/sections on him and see what they do with him. We pleaded and cajoled, but he would not budge. Of course my blood pressure was sky-high by this time and it set him off even further. And the scan showed the baby to be big – go figure, as the other two were…so he even jumped up and down a little bit more. We left – me looking and feeling not friendly in the least – and with NO solution. He’s the most VBAC friendly of the three doctors the midwives use routinely.

Dirk went to pick up a letter from the hospital in Pietermaritzburg after my meeting with them on Friday and it basically was just a blanket refusal to adhere to anything in my birth plan. Nothing about our discussion on Friday. Everything they said was just lip service. To add insult to injury Dirk sat talking to the ward manager and who would walk in? The same nurse who’d been on duty (at a different hospital)when we arrived with Loren after his birth – him unconscious and us in tatters – and who proceeded to physically and verbally abuse us, who did not check on my bleeding and then lied about it in the medical records when I nearly died after being left to bleed for 6 and a half hours. So, basically this hospital is pleading adherence to “very strict standards of care” as a reason not to give in to reasonable requests yet employ a nurse who is not worth the paper her qualification is written on. Groovy.

I don’t think anyone can blame me for not really being all that enthusiastic about delivering my precious baby at their hospital. So I cried and cried some more and got angry and Dirk got angry and Marco felt the tension and was impossible and we all fell in bed exhausted. At four this morning I woke up and decided to go back one step. I know I’m not going to get good care from this local hospital. The doctors are good, but they definitely won’t be there to hold my hand and the OB is not totally on the side of a VBAC. So, if it is a c/section or a VBAC I’m going to have to fight fight and fight. And we want this to be a good experience, right?

Dirk sent an SMS to Annie, the doula. We asked that we book a c/section with the doctor we’ve seen yesterday at Crompton hospital in Pinetown. But for as late as possible. (He would have sectioned me there and then if I allowed him yesterday). Annie and Cheryl will go in with me and assure that the baby is handled gently and that I get as much time as possible with him/her and support Dirk. Our only problem was if the baby turns and we want to do a VBAC. We still don’t have backup for that. Cheryl assured us that she’d still be on board for a VBAC if she had backup in a vertex birth. So they suggested we phone the doctor again and plead our case over the phone. I wasn’t feeling too comfortable doing it. He’d already said no, after all. But then Dirk had a brilliant plan.

He went to see Vidette Juby, the very kind and caring GP who looked after Loren and Marco. And she agreed to phone the Durban-based doctor. In the end she got him to agree on postponing a c/section at least until the due date – which is still not ideal, but with which I can live – and to back us up in the case of a vertex VBAC provided we sign an indemnity. I am fine doing it, Dirk is still unsure. But given the hopeless situation yesterday I once again feel a bit better about our choices.

I also went to see Dr Bruni, our homeopath and took Marco with. Marco was all over the room and displayed signs of anger – which has been worrying me lately– and Dr Bruni listened to our sad tale with sympathy. He has treated Loren before as well. Turns out him and his wife faced the same VBAC situation four years ago and he advised me to go to a specific government hospital in Durban if I have no joy elsewhere. But it was so nice to be understood for a change! He was actually able to pre-empt my answers relating to Marco and gave us remedies for our specific problems.

So, yeah for Drs Juby and Bruni and the midwife and doula team! And YEAH for Dirk.

Light at the end of the tunnel?

It is early Saturday morning here, and after the week we’ve had, I’m too frazzled to sleep.

Let me just say that all in all things have taken a turn for the better.

My birthday was nice, but very busy. I could sense Marco feeling insecure as a result, so I promised to spend quality time with him the next day. And so went for a long walk, Master Marco demanding that I push him in the pram the whole bloody way. But rather that than making him walk and him getting tired and demanding to be carried…We painted and played with clay and played outside. We really had fun.

In phoning possible Doulas we “met” both the very lovely Annie and Gillian. And they just confirmed that giving birth under the circumstances dictated by the hospital was not going to be conducive to a calm and peaceful birth.

Dirk had a meeting with hospital management early Wednesday morning. And though I must say that they do seem to be the best possible choice in the city and though they genuinely seem to want to accommodate us (me) as far as possible, putting their intentions in practice just seems impossible. By the way, don’t I have an incredible husband?

To give you an example about the type of thing they are inflexible about: An IV line seems unavoidable. Now anybody who has been in labour will know that changing position or walking around with a bag attached by a needle in your arm may prove tricky, if not impossible. And….why? Provided I stay well-nourished and well-hydrated, neither my baby nor I should need IV fluids. But see, that is the trick! Because during labour, you are not allowed to eat or drink under hospital policy “in case” you need general anesthesia. I’m the first one to admit that it is entirely possible to need anaestesia, but it is not as if I’m going to wolf down entire pizzas in labour taking hours to digest…During labour, I’m mostly just thirsty and I might want something with high glucose content such as a banana once or twice.

To give them their due, they did seem shocked at the treatment we received with both Marco and Loren’s births and they acknowledged that I have a right to be very angry and sad and distrustful.

Despite all this, my birth plan came back stating that they could (or would) not support most of my requests. Even Dirk felt that this was excessively unreasonable.

So, speaking to Annie and Gillian led to us speaking to a private midwife located in Durban. She helps mothers deliver at home but also in an active birthing unit in a hospital where she seems to have the authority to do as she pleases. She is backed up by an OB and the theatre and ICU is right next to the birthing unit – in fact connected by an interleading door! Dirk was and remains worried about the distance, but it is a mere 45 minutes from here. If I act straight away on feeling the first contractions – and I generally go into labour very clearly and unmistakably – we should have plenty of time to get there. Obviously, in the case of an emergency, we’ll simply go to the closest hospital. The OB we’ve seen here, is (bless her soul) still prepared to step in in an emergency. I’d say she’s probably very relieved to get me out of her hair!

So more than halfway convinced, we made an appointment with Cheryl, the midwife and Annie who will act as her assistant. Annie is also a registered nurse /midwife and will act as a doula. In no hospital am I going to get the undivided attention of two people… I liked them a lot and they mostly laughed at my birth plan, saying that this is how they work anyway! Cheryl quickly assessed the baby’s position and confirmed him (her?) head down again, but not engaged – which would explain the tricks s/he gets up to. Listening to Loren’s birth story she is convinced that nothing actually went wrong with the birth process, but that it was a matter of inhalation of amniotic fluid only. She phoned the backup OB and explained the situation and he is prepared to back us up even if something should happen between now and Tuesday when we have an appointment to see him.

We went to see the hospital – a private hospital in Pinetown – and were met by friendly and helpful staff all around. The birthing unit is very nice with a Jacuzzi, balls and plenty of space to move around. They are very pro-natural birth and breastfeeding and I’d be more than happy to use their facilities.

By Thursday night, everything was booked and mostly sorted out.

But then I still had appointments to see the GP and the maternity ward manager at the local hospital on Friday. We decided to keep those appointments since we’d still be using the local hospital in the case of an emergency. The plan B we didn’t have last time….

Dr Juby spent a long time with us. She admitted that looking at my birth plan she thought: “Whoa. This is NOT how we do things.” But then she started researching some of the points herself and she says that what I want to do seems entirely sound and that with the exception of one or two points I have her full support. We debated the points (BCG before discharge and Vit K) and I took note of her reasoning. But I also explained why I have problems with these things and she understands where I’m coming from. She will still assist in the case of an emergency c/section if we need one immediately and has promised to do everything in her power to honour our plan and make the experience as kind as possible for our baby.

Of course, getting a sympathetic ear from Dr Juby, had me in tears and I drove to my next appointment sobbing helplessly. I just missed my little boy so much.

I must admit that I went into the meeting with the maternity ward manager and the NICU and nursery manager a lot calmer than I would have been if this had been my only option. After all, the maternity ward manager had made crosses at most of the points on my birth plan and it was clear that we might just as well be from different planets!

So I started off by thanking them for the time they spent on this and reassuring them that we’d only use them in an emergency. Behind the professional facades I could sense their relief. I’m sure I’m most medical professionals’ worst nightmare and I say that with a great deal of shame. But no wish to change whatsoever!

Therefore we only discussed an emergency c/section and treatment afterwards. We debated the points and they seem to have been under the impression that I want things done a certain way even in the case of the baby having health problems despite stating clearly in the birth plan that this is in case everything goes well. They also misunderstood what I meant with some of the things and could see sense in my reasoning after an explanation.

Just a small rant: Having gone through what we’ve gone through, do they really think I’d take the smallest chance!?

In the end we probably left each other with a better understanding of each other’s motives. As we discussed Marco’s role in the whole process –they’d be quite prepared to include him as far as possible – I could feel my composure starting to crack. He has really had a rough deal –especially since Loren died. I told them how Loren could not cry when we took him home and that this time Marco would probably have to adjust to a much more demanding baby. Of course this made me think of Loren and just grieving for all the things he missed out on. And before I knew it, I was sobbing again. They produced tissues and sympathy and I left them as new best friends….. Just kidding! But I do feel a bit better about them and they about me too, I daresay. I still hope I never have to see them again, though.

By the time I got home, I was physically and emotionally spent. But I am relieved that we finally seem to be moving into a definite direction. The only thing that makes me a bit nervous still is the backup OB. But after that I suppose it is just a question of wait and see…

Ended beginnings

I have a book recommendation for anyone going through a childbearing loss. Ended beginnings It was recommended to me by the lovely ladies from ICAN. I had to order my copy from the USA as our local bookshops don’t stock it and ordering it through them would be too expensive and take too long. I finally got hold of a second-hand copy through Amazon and it is as good as new. It also arrived almost a month earlier than expected. On my birthday!

The definition of childbearing loss according to the book is infertility, miscarriage, stillbirth, infant death, disability and traumatic birth – that includes any birth not going as expected or desired, either c/section or traumatic normal birth.

Reading the book I realized that we undoubtedly had a rough deal – if this wasn’t a family blog, I’d use a much stronger word. We experienced infertility, infant death, disability and two traumatic births in the past 7 years. No wonder we both feel at the end of our tether.

The physical manifestations of grief and shock are discussed. Dirk and I measured our blood pressure the other night and both are high…Also in dealing with traumatic birth one often forgets that it has physical ramifications. With Marco’s c/section as well as with Loren’s birth I lost a lot of blood and that has an influence for months afterwards. While Loren was alive I only got really sick (flu) once, but barely a month after his death I got a simple cold which I’m not able to shake completely. Dirk has been sick this past year like never before in his life. So has Marco.

I found the chapter on how to help siblings cope with loss and trauma, very helpful considering that Marco definitely have trouble dealing with Loren’s death. There are many techniques, but I tried to just engage him in talking about it. I asked him what he remembered about the night Loren died. I explained again what happened and said that we did not expect Loren to die. I explained we were sad and shocked. Marco nodded and said “you cried a lot”. He also said with the chilling honesty of a small child that he will hit Jesus for having his brother and not giving him back. He said that he misses Loren and that he wants him to come back to us. Then, seemingly unrelated, he recalled my car accident and said that he will also hit the man who collided with me. I understand that to mean that he wants to protect us against hurt. Oh, that this should be his burden at only three years of age.

I’ve been trying to prepare him for his new brother or sister’s birth. He helped me wash some clothes and I made him pick out the first baby outfit that I will pack. But when I explained that I’ll have to go into hospital to go and fetch the new baby, he started crying and pleading with me not to go. He probably associates hospitals with Loren’s illnesses. But I think the big culprit is Anna who said that Loren is in hospital after he died when Marco asked her about Loren. How on earth do I undo this?

The book really provoked a lot of healing tears from me. I don’t think I’ve been able to cry the way I’ve cried after reading the book. But of course this makes me a bit vulnerable at the moment. I’m “coping” less and feeling more. Could also just be a result of late pregnancy…. What a mess we are!

Anyhow, I’m fairly sure there are a few books dealing with this subject and if anyone has suggestions I’d love to hear them.

Maternity leave, a birthday and odds and ends

Today is my first day of maternity leave. It is also my 37th birthday.

It is strange how one can feel exactly five years old in some ways and yet older than 100 in many others…

I intend spending the day grocery shopping, directing Anton, the gardener that helps us once a week, to get rid of the glaringly obvious bugweed in the bottom part of the garden (Anton suffers from a strange affliction called bugweedmyopia which renders him incapable of distinguishing this weed from other plants and I really don’t want to be fined for having this plant in my garden), meeting my friend Patricia for lunch and seeing Dr Juby – the very nice GP who has been the children’s doctor – together with Dirk to try and sort out a birth plan. She has agreed to assist in the event of a c-section.

I’ve promised Marco no more going to work and even though there are many many things still left to be sorted out at work, it is also abundantly clear that my General Manager does not seem to give a damn. Despite phonecalls and an e-mail requesting a meeting, I have had no response from her whatsoever. I understand that she’s busy, but one meeting in a year is probably not too much to ask, is it? So, late yesterday afternoon, I dropped off some submissions and my leave form, gave the key to one of the more responsible architects and left.

Next week I’ll have to go back to see the guy doing our scanning project. We had around 52 000 drawings on microfilm and the reader as well as the database program have failed dismally. So, as my luck would have it, they are now almost in the middle of the project of digitising the data and indexing it. The people doing the indexing, though experienced, are not librarians and the material is very difficult to index, so I need to look at the database that they are busy creating to sort out any problems before they have to redo all 52 000 records.

Dirk agreed to go and see the ward manager at the hospital to discuss my birth plan. We looked through it last night and we tried to be clear on what is necessary and what is negotiable.

For instance, I don’t like the idea of having a heplock in place, but I understand that in the case of an emergency my blood pressure can drop dramatically, rendering them incapable of finding an open vein. So, I’ll forgo that one.

I don’t want continuous monitoring purely because I’ll have to be stationary and maybe even lying down for that. And that is simply begging for stalled labour and even a baby in distress. Periodic monitoring and paying attention to all possible signs of rupture is quite likely going to be more than adequate.

Similarly the standard used for dilation is the Friedman curve. Not only is this standard about 100 years old, but recent research has suggested that the way it was set in place and calculated was inferior to the methods used today. There is evidence that women generally dilate in a somewhat different pattern compared to the Friedman curve. And that is accepting that all women dilate the same way – which anybody with the ability to think logically would tell you is impossible. I wish I had a penny for every birth story I’ve ever heard with a person who dilated slowly for hours and then progressed to complete within seconds. There is no way I’ll let them dictate the course of labour or any intervention to me on the basis of an obsolete standard.

I’m not generally hungry during labour, but I am going to eat something easily digestible if I’m in need of sustenance.

And my baby is not going to leave my arms unless it is truly in need of medical care. I don’t care how they do it. I’ve had Marco – despite the fact that we were both fine – taken from me and obviously Loren too. The thought of it happening again just makes my heart ache.

All the above is of course why a homebirth is so infinitely more appealing and safer.

But today I’ll also start phoning around for a doula. If she could be a qualified midwife just going in with me as a labour support person, I’d be even happier. Considering that the last time I was left to almost bleed to death and had my records fudged too. The trick is finding the right person with the limited choice I have. There is only one homebirth/private midwife here, but even though I like her a lot, she was the one helping me at Marco’s birth and when we transferred to hospital I felt completely abandoned. I understand that she was on their turf and needed their goodwill to continue using their hospital, but it’s not a comforting thought either way. I will phone people in Durban and ask if they are prepared to travel. The two cities are only 45 minutes from each other, in any case. I’m sure that it takes longer to get to some of their clients within Durban – traffic considered – than travelling to Pietermaritzburg straight on the highway.

When He comes back

Marco has had a tough week, missing his brother. It seems that he feels enough time has gone by and that he would like Loren back now. Please.

He says that Loren is asleep under the flowers and that he will go and wake Loren up.

Suddenly he has grasped the concept that some things belong to other people rather than just being MINE MINE MINE!

So, he asked me yesterday about one of the teddy bears. I answered that Johan had given Loren the bear when Loren was a very small baby. But I added that Loren would want Marco to have the bear now.

A small serious face looked up at me: “Until he comes back, Mama?”

And it suddenly strikes me that he was right. Loren is coming back. Not today or tomorrow, maybe. But one day, we’ll all be together again.

Hello, soul mate.

Somebody found this site by using the terms “hate prenatal appointments”. Ah, finally! A soul mate…

I’ve been for my 36 week appointment at the OB yesterday. And would you know it: Baby has suddenly turned breech! I know there’s still time to turn back to vertex, but I need this added worry like I need a hole in the head. Strangest thing is that the baby was vertex when I got up that morning, because I remember him/her hiccoughing violently at some point and also kicks in the upper right quadrant of my tummy.

I wanted to go off today on maternity leave, but we’ve been forced to leave early on a couple of occasions with the strike, I’m battling to see my General Manager and I know that when I leave, I’m basically locking up the library without anybody to do my work for four months. So, I’ll come back on Monday and Tuesday and see how far I get. It’s still going to be a mess when I return, but I’m beyond caring.

Dirk and I are disagreeing about the birth again and, really! Neither of us needs this right now. I am relatively at peace to do the VBAC – knowing that it could become an emergency c-section – in hospital. But there are standards of care which are routinely used and are not really favourable for a successful VBAC. They are either used because they protect the doctor and nursing staff in the event of a malpractice suit, or they are used because they make things easier for the hospital staff. In a minority of cases they are used because they constitute the least risk. And the problem with this is that there’s always a trade-off. There may be less risk in some area. But they compromise another. I don’t want to allow them and I am prepared to use the “informed refusal” route for some and negotiate about the others.

Dirk disagrees. He feels that I’m unnecessarily confrontational. Maybe I am, but I’ve learned that you don’t stand a chance unless you are. And that if you aren’t very specific and stick to your guns at all times, you are going to end up with things you don’t want or regret later.

The problem is that the medical model of care does not take into account anything other than somebody just deferring to it. Even if the medical model of care is highly suspect. It is no secret that in the field of obstetrics there are many things left to be desired all over the world. Developed countries (such as the US) have a c-section rate of 30+ %. C-section rates in a homebirth setting is 4%…In our own country the WHO says that women giving birth in hospital stand a very high chance of intervention in birth, yet the infant mortality rate has not dropped. And we’re supposed to have some of the best doctors in the world.

I don’t want to hammer on the care Loren received but there were things that were forced on him and us because that it how somebody thought it should be done rather than because it was the best. And he suffered and maybe even died because of it.

The placing of his PEG (G-tube) was wrong because we let ourselves be talked into having it done before the doctor would let him go home. As if he had any right to dictate the terms…If we had a more experienced surgeon advising us and fitting it afterwards and had the Nissen done at the same time, he might not have had the propensity for developing ulcers and he would not have been weakened by weight loss and pain before he died. It is water under the bridge and he may have died anyway, but things like these are just a confirmation that doctors aren’t always right and that we, as parents, should have been more vigilant.

The only thing is: Most people don’t see it this way. They think that they are not responsible if anything goes wrong because the responsibility is carried by the doctors or midwives or whoever. It is very hard to admit that if you allow a particular treatment and something goes wrong YOU are still the one who allowed it. It does not make sense to then want to sue the doctor…I’m not saying that somebody is to blame in all cases of something going wrong. Sometimes bad things just happen. But medical care constitute making a conscious choice – acting or witholding action and the infinite number of variables inbetween.

My trust in doctors has never been good. But after Loren, it is truly nonexistent. I find it extremely hard to submit to any medical procedure. I’m not sure if it is just an issue of trust or because of the abuse by the nurses after Loren’s birth. Could be both and I truly don’t think I can be blamed for my feelings. Obviously I will have to overcome this to some degree, but it is hard.

The OB would not want anything to go wrong with this birth. I’m sure she firstly does not wish anything bad on us, but the main thing is that she needs to cover herself. Unfortunately her field is highly litigious and somehow the impression exists that OBs only get sued for the c/sections they don’t do, because there is a mistaken perception that a c/section is the best care. Which, I can assure you, is only half the story.

If I do agree to a c/section and something goes wrong with that – as there is a bigger chance of happening (c/sections being major surgery) – the results may be just as dire as when something goes wrong with a VBAC. Either way, we have to live with our choices…

But in the end it is not just about deciding between a VBAC or a c/section. Although I know that the former is considered safer overall if you look at stats. But it is between deciding what myriad of choices are safer for a particular person or birth. And to know that, you’d have to be clairvoyant. Even the most experienced doctors can make mistakes.

In the last week I’ve made contact with two people who have been through very similar situations as we have. And I’ve come once again to the realization that there are no guarantees, that this is a tough road and that many people who have not faced it walk around with blindfolds most of the time.

I wish we could just spend the last few weeks in peace and filled with joy and anticipation. I wish we didn’t have to make these decisions while mourning a child we love and miss and with all the emotional baggage of his birth still lingering in our minds. I wish we could just go to sleep and when we wake up Loren is back and the new baby is born and all is well. I am strong, I was strong, but I can sense the end of my strength approaching fast. I’ve really had enough.

Is it too much to ask that things go the way we would want it? Just once.

Strike continues

The strike continues. My sister teaches at a high school and they have decided not to strike and carry on with exams. But they need to do this in secret. Their cars are parked at the back of the school and they are constantly keeping an eye on the situation. From what I understand, they try to write exams early in the morning, the kids are dressed in civvies and they let them go home in small groups after writing exams. They are cautioned not to walk around in town in groups. The teachers are warned when groups of troublemakers approach the school and they flee in their cars if there is the slightest possibility of danger. I do think that the teachers, rather than the kids, are the targets. But one has to acknowledge that children can get hurt in the process.

Obviously, with a lot of children not able to attend school, parents are forced to take leave in order to look after the kids. So, even the private sector is affected.

On Friday we were sent home early. Ostensibly because there was a group of people marching through the city, but unofficially it is acknowledged that it is because of a bomb scare. At Provincial Government Headquarters ,a car burnt out.

From today, municipal workers are on strike too and apparently minibus taxi transport is affected. Unions have dropped their demands to a 10% increase, but Government still only offers 6.5% to my knowledge.

I’m not generally negative, but this does not bode well.

Finding grace

Large parts of South Africa consist of semi-arid areas. In some of these areas children can be five or six years old before they see rain for the first time. Farming is adjusted to suit drought, but sometimes even the most hardy crops or animals fail to survive. The people who live there are often intimately acquainted with suffering and hardship.

My mother’s folks come from the Kalahari desert. They are, without exception, good people – generous and kind. I have a cousin a few years younger than me who farmed in the area until a few years ago. Due to a continued drought, he decided to sell the farm and find another life for him and his family. I’ll always remember what he said to me after he found a new home for his family, far away from his birthplace: “I’ve had to make peace with the fact that my prayers for rain on a small spot somewhere in the Kalahari desert, might not coincide with God’s plan in the greater scheme of things. Maybe the weather patterns that eventually contribute to the well-being of large nations exclude the possibility of rain on my small farm. And so I’ve decided to take a leap in faith knowing that God will provide for me either way.” I call that trust and last time I’ve heard from them, trust has paid off.

And then, this weekend, I read a book that Dirk received as a gift a while ago, Laataand biegstories by Jan Nel. It consists of short stories about my people – the Afrikaners. I’ve never heard of the writer, although apparently he’s a columnist whose material is/was read on a popular radio program. I must confess that I’ve largely lost touch with Afrikaans literature since I’ve had kids. There’s just no time any more.

There are stories in this book that describe my people so well. Two stories in particular, made a huge impression on me. One deals with how a young boy with Down’s Syndrome, changes his father from the black sheep of the family to a worthy heir to a dignified inheritance. The other deals with prejudice against a brain-damaged child and the value of life. Something makes me think that this author understands what he’s talking about….
But it is from one of the other stories in the book that I would like to quote. One that deals, strangely enough, with the subject of a drought. I would like to use the writer’s own words, but regret that things may have gotten lost in translation. Here is my attempt, though:

“ And once again, I was rebellious. Every time the clouds gathered and nothing came of the wonderful promises contained in those clouds. But I’ve learned a few lessons.

I’ve learned that God will flatten you to the ground and don’t you ever doubt that He can. Eventually you won’t get up any more. The wind will blow over you and sun will burn you and it won’t worry you any more, because the rebellion in you will disappear.

I’ve learned that humankind is not the strongest. Not even strong enough for the drought. I’ve learned that you can pray only thing in all truth and with childlike trust. You can ask
for the acceptance of new and unknown things and fresh threats. And you can ask that you won’t lose every ounce of self-respect and dignity in the process. You can ask not to moan and cry and complain in front of the whole world when you don’t get what you want and that you will ask without fail that you would understand that the things you want may not be as important to all the other people on this earth as to you. Strength to accept – just that.

And now? How about the distance and the quiet and the loneliness of the nights with their stars? How about the luxury of space around us and the relief in the cool of the night when the burning sun went to sleep and the heat disappeared slowly from the blackened stones? I believe that the Decider about these things could perhaps be found by day in the cool places and next to the new church organ or on the soft benches in the church, but late at night you will find Him here if you know how to search, even now when it is so dry. And I’m wondering: Do you understand about grace?

Praying for acceptance is, of course, directly in opposition to what I have decided to do with Loren, because I believed that that would be paramount to “giving up”. I fought, because I knew that without fighting Loren would not stand a chance.

But the way he died robbed me of the opportunity for putting up a fight. I could not bargain, I could not plead. And it might have been in vain anyway.

And now? How about the unexpected beauty of the sunrise I’m looking at right now. How about the memories of a soft warm body I could hold for a while. Clear blue eyes looking into mine with trust and love. I know that the Decider must be around. Not in the lofty churches or contained into theological volumes, but right here. Because if He wasn’t, I would never have survived this.

Maybe I’m finally learning all about grace.

May you live in interesting times, eh?

The South African political situation is, as always, interesting.

Currently, government workers are striking to obtain an increase in salary. They (or I should say, we) are demanding 12% and the most government would so far give was 6.5%. To be truthful, some salaries are truly bad. And I feel that government has been given the budget to pay people more. Why not do it? I even don’t mind if it is on a sliding scale – to benefit people who earn less more than people in highly-paid jobs.

The strike has been going on since last Friday. I decided not to strike, because I feel that I have a lot of work to do before I go on maternity leave – hopefully next Friday. We have been lucky so far in that most people in our building haven’t gone on strike and that there was no picketing in front of our building.

Other people haven’t been lucky at all. In some hospitals, workers are locked out of the hospital while patients are doing without care inside. It sounds like the real casualties so far have been fewer than one would expect – confirming my belief that one is probably better off without the dubious “care” given by some doctors or nurses. Ha-ha. But not a nice thought, all the same.

Teachers have been on strike since Friday. Children were in the middle of exams – which have been stopped now.

But intimidation is taking its toll. There are whisperings of deaths and physical attacks and things are definitely getting out of hand more and more.

This morning, as I arrived at work, workers were standing at the gates with sjamboks (sticks). I simply waited in my car in front of the gate for security to open it and went in. I think the guys saw on my face that messing with me will not be welcomed and I had the advantage of being in the car. So, I’ve been at work today, though many people turned around and went home. I don’t blame them.

Who knows what’s next?

Grieving – a better way?

I think that your reactions to my previous post deserve a separate post of its own. The last one was written sometime in the early hours of Sunday morning and was an extreme expression of grief. I still feel the same way, but your replies also have given the gift of perception. Of stepping back one step. Thank all of you for that.

This post has been edited and re-edited. I will not allow my feelings or someone else’s manipulation creating a chasm between me and my husband again.

Of course I’m disappointed at Dirk’s parent’s handling of Loren, but why should I take up that particular ball and start juggling it again?

It is true what all of you said: Grieving is very personal and differs from person to person. Dirk and I have been feeling the same way often and we are very open about our grief to each other. I know that we are blessed. In fact, this is one thing that many people who have been in similar situations warned us about. That we must keep talking. Fortunately talking is Dirk’s way of dealing with grief and he allows himself to cry. So do I. Saturday night was one of the very few times that I felt at odds with him in our grief, but it was because I allowed a person from outside to influence my feelings.

In a way, Loren’s life prepared us for his death. The process of making peace with his disability, was no clear-cut step-by-step denial-anger-bargaining-sadness-acceptance a-la Elizabeth Kubler Ross, but rather intense negative emotions separated by periods of equally intense joy and peace and love and contentment. I’m sure that it also came across this way on this blog.

I made the choice of never accepting the disability and especially the results of the disability, but accepting and loving my son – even though the distinction was sometimes very difficult to make. And Loren was so easy to love.

So now we deal with the same intensely negative emotions: Anger and rebellion and sadness and sometimes even bitterness, but once again they are offset by incredibly positive things as well.

Initially I would research the life expectancy of kids with severe CP. I never really liked the answers. It depended on a number of things some of which were how mobile they were and also whether they had a feeding tube etc. If Loren remained exactly the way he was, his peak life expectancy would have been more or less 11 years. At the time I thought, he is not going to stay immobile, he will learn to swallow. So I was thinking of a life beyond 11 years. 11 years sounded terribly short.

In the end we only had 17 months.

Last week somebody said to me: “Death becomes far easier to handle when we realize that it is no accident. The soul decides when it has fulfilled its destiny.” I would have wanted to put it in a Christian context, but the principle does not differ much from this one. Nor do the facts. There was only one nappy left out of the pack. The lavender-scented baby wash I liked using on Loren’s soft hair was finished. We had a great last cuddle lunchtime on that eventful day. Loren said his goodbyes without us realizing it.

Last week we arrived at the cemetery to find a new little grave in the empty spot on the other side of Loren’s grave. The tiny baby occupying it had the same birthday and death date. Some people don’t even get 17 months…

Loren has never been dictated to by other people what he should feel and how he should react to difficulties. He was no poor little victim of his circumstances. (And sometimes, by defending his memory so fiercely, I make him into the victim he never was.)He lived every moment to the fullest. He loved with all of his heart and unconditionally – which is something he definitely did not experience from everybody he came into contact with. Maybe Loren has squeezed far more out of life than a lot of octogenarians ever will. There is no limit in number of years that determines fulfillment.

And no cut-off for a life well-lived.