Babies and other things

Because I don't post on this blog every day now, when I do post I generally have a host of subjects to post about.

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First subject: babies. I haven't gotten any further in my thinking about this.

We heard back from the geneticist. She's come up with a number. 1 in 4. Or 25%. A 1 in 4 chance that another child of ours would die. A 25% chance that another child of ours would die. And this is an educated guess. Because they (the geneticists) don't know why our children died. Their guess is based on the assumption that it is a genetic issue. And an assumption that it's a recessive gene, not a dominant one.

I guess other people look at the number from the positive side. That there is a 75% chance that another child of ours would live. But I can't do that. Because I've only ever experienced the 1 in 4 chance. The deaths.

We're waiting to hear from the pediatricians about what they could do for us, and for any possible child. I would need to know exactly would they could do before I could make any decision.

But the fear is still there. Of course. I don't know if I could do it again. Watch our child die.

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Second subject: work. I went to the office on Saturday and removed all my stuff.

My secretary very kindly met me there. She'd locked up most of my stuff in a cupboard. She had dinner with us last week and mentioned that she was moving to a different job in the firm. So I thought that was a good time to get my stuff out. I'm technically still employed by this firm, although I have no contact with them at all any more. Except with my secretary, because she is a good friend.

It felt very strange being in the office. I haven't been there for a long time. It felt strange seeing all my stuff. The documents. All that stuff represents something that used to be very important to me. It represented a career. A very successful career. It represented a future. And we just packed it away into cardboard boxes, and put them in the garage.

I miss it. That career. That person I used to be. I really miss it. I studied hard for it. I worked harder for it.

Sometimes I daydream that I could go back to it. That life. That person. That career. But then reality surfaces. I have become such an anxious person, such a stressed person, such a traumatised person. That person will never be able to cope with such a job. That career belonged to the person I used to be.

Third subject: nuclear power plants. I'm not a supporter of nuclear power. I never have been and I never will be. Because I do not believe that nuclear power is safe. This subject makes for interesting conversations at home, because Craig does believe in the safety of nuclear power.

I think of nuclear power like I think of everything else in life, ie. bad things happen. And there doesn't have to be a particular reason for it. You can do everything right, and still bad things happen. It's just that with nuclear power plants, when bad things happen, they happen on a HUGE scale. They impact on many, many lives. The repercussions are felt by thousands (if not millions) of people. There's not just the physical impact, but also the economic impact. It will take Japan many years to recover from the earthquake(s) and tsunami, but the repercussions of the nuclear disaster are not clear, and may take years to be known.

And how many bloody nuclear power plants are there in the world which are past their use-by date? Do people even know that these bloody things have use-by dates?? Probably not. People live in ignorance. The power plants cost so much money to build that no-one has the guts to say that it's time to scrap them.

Why on earth are we (and I'm using the collective "we" here) not investing in sustainable energy. Solar power. Wind power. Water power. The options are there. But everyone says they are too expensive and too inefficient. What utter rubbish. Why is it ok to spend millions on building a nuclear power plant, but not on a solar power array? Here in the Netherlands there are many, many wind farms. We use clean energy in our apartment. We have chosen to use electricity which is produced using wind power.

I think nuclear energy is dangerous. Craig was just telling me that today is the 25th anniversary of the Chernobyl disaster. And what have we learned from that? Nothing. Nada. Niks. Absolutely zilch. Nothing has changed. And nuclear power is just as dangerous, as we now see in Japan.

Fourth subject: building co-owners group. We have a meeting coming up. With the other owners in the building. There's only four of us, so you'd think we could keep it short and sweet. No way. We have to discuss everything for hours. Then we think about it for years. And, maybe, something will eventually get done. I can't stand it. It causes me so much stress. I am dreading the meeting.

We had to fight for years to get our bloody roof fixed (because of the leaks) and it all had to be done just a month or so after Jet died. And not one of those bloody co-owners helped. Not one. We had to do everything ourselves. All the organisation. Keeping the neighbours happy (which proved impossible). Lots of confrontations and we were still in shock from the death of our son.

I really can't stand them. Our fellow co-owners. None of them have ever done anything for us. Never. Even after Kees died. Or after Jet died. Instead they just expected that we would deal with everything on behalf of all of them with getting the roof done, with the insurance claims, all of it. And then they complain afterwards. They all just suck.

Fifth subject: my dad. He's decided to come to the Netherlands for a visit. When I heard, I was completely flabbergasted.

As far as I know my parents do not have the money for such a trip. But hey, what do I know? Nothing apparently.

He's coming to visit his siblings. One of his siblings was diagnosed with pancreatic cancer in December last year. He had surgery in January this year and the doctors are optimistic. However, my uncle thinks he knows everything better, so he stopped taking his medication after a few months, and promptly suffered what the Dutch call a "heart-stop". Which pretty much means his heart stopped. Which I would call a heart attack. (Bunch of freaks, the Dutch.)

Anyway, so my father has suddenly decided he wants to see this brother of his. Because he doesn't want to come for his funeral. I asked whether he planned to come to all his siblings' funerals because that would become expensive (he is one of 7 and all his siblings live in the Netherlands). You should note that my parents moved to Australia nearly 34 years ago. My parents are therefore not as close to their siblings as others may be.

I found out just a few days ago that he was planning this trip. He'd spoken to all (but one) of his siblings, and then contacted me to see if I would be in the Netherlands at the time of the trip. Actually we had planned a holiday, but we're probably going to cut that short.

Just the idea of having my dad here for a month is already stressing me out. My dad is a very optimistic person. He always thinks the best. I don't call it optimism, I call it impractical and unrealistic. I think he's hoping for things to happen on this trip that won't. He's hoping for some sort of reconciliation with his siblings - he's hoping to make up for 34 years of separation. But it won't happen. I've seen it before. He was here 7 or 8 years ago, visiting me. He was hoping the same then, and it didn't happen. It upset him very much. So I fail to see why he thinks this time will be different.

Anyway, it's bound to be a stressful time. I know that because it already is!

Sixth subject: I'm lonely. I spend time on FB because it makes me feel less alone. It makes me feel that I have some "normality" in my life. That I communicate with people. But the truth is that I don't.

We have a very small number of people who we socialise with in real life. It's not regular. Some of them live far away from us. Some have children, so their life is all about their children.

I miss people. I miss people who know me. I miss people who I have a history with. I miss people who understand me.

And that's a loss no-one ever really talks about. We didn't just lose our children, our future with them, we lost us. We lost the us we were. I lost friends. Many friends. Friends who didn't know what to say (or do) any more, so they just said and did nothing. Can you imagine? Friends who have said nothing to me at all since Jethro's death. Obviously they are not friends any more, and arguably they weren't friends before.

And now, with the defection of my ranting uncles, our social group has shrunk even further. I have Craig, and I'm ever so thankful for that. But I have no-one else. Not in real life. And it's awful.

Last subject: I'm bored. All the time. Nothing really interests me any more. And I don't know what to do about it.

When we go away, I pine for the cats. I worry about the cats. I get homesick for the apartment. That makes it difficult to enjoy our holidays. Sometimes we decide to go back home earlier than planned because I am so anxious.

I like to buy things. But that's only interesting for a few minutes. And it's very expensive.

I'm not an artist. I'm not very creative at all. I can make our apartment look nice, but (i) it's already too full, and (ii) it's expensive. I wish I was creative. I wish I could paint, or be musical, or anything really.

I like to garden, but we only have a roof terrace. Most years in the spring I plant lots of seedlings. I love to watch them grow. I love the colours. But this year I haven't done that. Because we had planned a long holiday in May, and so any seedlings I had planted would die.

We go to the cinema. But we go when it's not busy. When there aren't kids around. And we can't go the cinema every day. Because there aren't that many watchable movies around.

The tourist season has well and truly started in Amsterdam. It means there are people EVERYWHERE. We live in the centre, in the canal-belt. In a Unesco Heritage Site. It's a beautiful city, but when the tourists are out, it turns into a nightmare. I can't even walk out of our front door without being assaulted by their presence. (They park their bikes in front of our door. Yes, really.)

So. I really don't know what to do with myself. Every day we have to think of something to do. Sometimes we have medical appointments, so our day gets planned around that. Actually, every week we generally have at least three medical appointments. Most days I get tired, so a nap is required. (My naps are anywhere from one and a half hours to three hours long.)

Discussing the meal plans for the day takes up some time. Shopping for the meals and preparing the meals takes up more time.

I made Craig help me sort out some of our storage space in the attic. We got rid of some stuff. Like our ENORMOUS (old-style) widescreen TV which hadn't been used for months. We have three floors in our apartment, and each floor had a TV. The other two TV's are LCD flat-screens, so we really didn't need the third 40 kilo monster.

I folded up some clean laundry the other day. It had been piling up for weeks. It bores me to do it, so I just don't do it. But I was feeling guilty about it piling up, so I did it.

I often think that I want a child because a child will give me a purpose. A reason for being. It will give me things to do. I will give me a reason to look forwards. To hope for the future. To even see a future. But what will I do if there isn't another child?

Ranting uncles

We had dinner with my uncles last night. I had been looking forward to it, because we had not seen them for a while. They had been away, and before that we had been away.

Our relationship with them has been a bit strange for the last few months. Since christmas when the car was damaged. I blogged about it here. At that time, when Craig first found the damaged car, he came to tell me about it, and then said he was going to confront the hotel management. I said to him not to, because I knew he would lose his temper and over-react. Well, guess what? He did. He over-reacted and lost his temper with them. They brushed off his complaints because he was a "foreigner" which only made him more angry. Unfortunately the whole unsavoury episode was witnessed by my (now ranting) uncle. And it's clear he hasn't forgotten or forgiven or tried to understand Craig's over-reaction.

But I rang them this week to welcome them home from their holiday. We had a long chat and they invited us for dinner.

Craig and I have spent a lot of time with my uncles over the last year or so. We've even been on holidays with them. We like them both very much. I've known them very well over the last forty years or so. They came to visit us in Australia quite often, and we used to sit outside and smoke on the verandah. We all three have good memories of that.

But last night the shit hit the fan. One of my uncles just started ranting, and that was the end of all those relationships. He said all sort of stuff, but I guess the most important are: (i) that Craig was trailer-trash, (ii) that Craig was sponging off me and sucking the life out of me, and (iii) that they don't want to hear any more about our dead children. He really ranted and screamed. There was no opportunity to respond, and I didn't want to anyway. So we left. We walked out. It was obviously what he wanted.

We won't hear from them again. Which is very sad.

I'm very angry with them too. For behaving like such idiots. For saying such things about my husband, about the father of my children. For dismissing the memories and names of my children with such anger. That in itself will ensure that I will never contact them ever again.

I knew there would be consequences from the episode in December, but I had not realised that it had been brewing away in my uncle's head. Not until it all came out last night.

So, our social circle has shrunken considerably. I suspect our time in the Netherlands may be ending far sooner than we had thought.

The geneticist

So today we met with the geneticist.

We hadn't met her before. Se had inherited our file from another geneticist who is currently on maternity leave. Craig had spoken with the "replacement" geneticist a couple of times on the phone, but he'd never met her either.

The purpose of this visit was to discuss with her the possibility of our having another (biological) child. And what that would mean. And what the possible genetic risks may be. Given that our other three died, and no-one knows why. And what sort of support the hospital could offer us - both during the pregnancy and after.

We met with her for an hour and a half. It was a good meeting. I think it was maybe the only meeting we've ever had with a doctor where we walked away feeling she understood our concerns. And didn't dismiss them.

So now she's going to speak to other geneticists and other specialists. She's going to speak with the obstetric team and pediatric team at the hospital, to see what they can offer us, should we choose another (biological) pregnancy.

So we've set something in motion. Something that will help us decide. Decide whether to have another biological child. Because that's what this will do. It will make us decide.

And I really don't know what that decision will be.

But it was a good meeting.

More on children.

We had another adoption information session today. The fourth and final (compulsory) one.

Some surprises came out of this session.

One of the couples who attended all the other sessions had dropped out and decided they weren't ready to commit to a special needs child. I'm very sympathetic because I'm not at all sure that I'm ready to commit to a special needs child.

I found out that a severe facial (or other) birthmark can be considered "special needs". Imagine that. A perfectly healthy child, with a very visible and probably large birthmark, is not adopted in his/her own country because s/he is considered "special needs". Bizarre.

Also that in Uganda there are currently two sets of siblings waiting for adoption whose only "special need" is that they are "very black". Unbelievable. Perfectly healthy children, brothers and sisters, who are looking for a home, and some people find them "too black". Craig and I found that offensive. Imagine that. Because I really can't. I just want to scream "give them to me!", but that's never going to happen.

And apparently the adoption process will cost a whole lot more than we thought. We had thought around the EUR 25,000 mark, but it appears to be closer to the EUR 40,000 mark. For one child!

Then the facilitator mentioned a special "test" that we (as 42+ year olds) have to do. And did we know it will be on the 12th??? Neither of us had any idea what she was talking about, as we'd not received any information about a "special" test that we are required to complete. Apparently as we were 42 when our application went in, we are required to complete a test, whereby a behavioural therapist will be able to build a psychological profile of us. Right. And if we'd applied a few months earlier, before we turned 42, we wouldn't have to sit the test. Really. Anyway, this sort of test is exactly the sort of test that I think we would fail. Probably quite miserably. Considering the anger, the grief, the trauma, the stress, and everything else that we've gone through, I don't consider that our completing such a test would result in a positive recommendation.

And it all takes so long. We'd be doing the test in May this year. Then (if we "passed" the test) in August we'd begin one of three sessions which comprise a home study. Then if we passed that, we'd eventually get a "permit". Once we got a "permit" we'd have to choose our adoption mediator. But choosing a mediator is in itself a very stressful process, as there are 5, soon to be 6, mediators in the Netherlands. They each deal with particular countries. And (here's the killer) you can only register with one.

It's all a nightmare anyway. Because we would have to find a mediator who has a relationship with a country who allows (i) adoptive parents of 42+ years of age, (ii) adoptive parents with a blemished medical history (Craig's cancer and my on-going anxiety and depression), (iii) adoptive parents with an uncertain employment situation (Craig's not working and me still being on sick leave), etc, etc. There's a whole list of issues.

Which all lead me to the same conclusion. That at this stage of our lives, adoption in the Netherlands is not for us. We will only be allowed to adopt a "special needs" child, and I don't think we can give a special needs child what s/he requires. Maybe five years ago, before three dead children, yes, maybe then we could have. But not today. Not any more.

We're going to have to have the discussion. The options discussion. The discussion about what happens if we decide that special needs adoption is not for us. The discussion where we see what our remaining options are.

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My friend Birni had her baby today. I'm happy for her that she has a healthy baby boy. But I'm sad for me and for Craig. Sad that our healthy baby boys died.

Children

It's a gray, rainy Thursday, and we're at a friend's house in the south of the Netherlands so that Craig and he can fiddle (yet again) with our car.

I'm amusing myself for the time (hours) it will take until the fiddling (oops, fixing) is done.

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We've been going through a bit of a tough time recently. So much so that I decided to withdraw from F.B. and make this blog private again for a while.

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Craig and I both still want to parent a living child, but to date we've not agreed as to how we would be able to achieve that.

I looked into embryo adoption. And that seemed like a perfect solution to me. A baby, but not our genetic baby, so much less chance of a baby dying. Craig didn't like that idea much.

A lovely lady offered to give me her embryos. Another perfect solution. Again, no Craig/Mirne genes, so less chance of a dead baby. But Craig didn't like that either.

Then we talked about adopting. And we thought we might make some enquiries about that. Which we did. We found that for us, in our circumstances, there are many restrictions.

In the Netherlands, once one of the couple is 42 years old, that couple is in principle no longer legally eligible to adopt a child. There is an exception (of course). And that is if the couple will adopt a "special needs" child. In addition, there may not be more than a 40-year age gap between the youngest of the couple and the child(ren).

So. We have been attending (compulsory) adoption classes. These classes are intended to open the eyes of the prospective adoptive parents (us) to the type of adoption we would be facing. The adoption of a child (or children) from a country where no-one wants to adopt them. The reason no-one wants to adopt these children in their home country, is that they suffer from either physical or psychological problems (or both). And these are serious problems. Problems that make them (in effect) un-adoptable in their home countries.

We've been sitting in an English-speaking group for the last few weeks. They are couples all around our age, from Sweden, Andorra and Spain. Either married to a dutchie, or simply here in the Netherlands for the time being.

None of them have had (or have) their own biological children. They have all gone through various IVF procedures without any success.

This makes the group very interesting. Because these couples are very, very different from us. How they view a potential son/daughter is very different too. How they think about parenting is strange (to me). How they think about cultural differences (they don't) is just crazy. Sometimes I have to stop myself from laughing, or snorting, or just being completely amazed at their naivety.

Anyway. As a result, Craig and I have had lots of talks over the last few weeks. And it turns out we both want the same thing. Or rather, we don't want the same thing. We don't want to adopt a "special needs" child.

I feel like I'm being punished. I feel like if my three children hadn't died, then I wouldn't be sitting in this group thinking about adopting a child who has serious medical issues.

I feel like I'm being doubly punished. If I hadn't had any children, and we had considered adoption, we wouldn't be in this position where we have three dead children and are then told that we are too old to legally adopt a healthy child.

And it's so very, very difficult to remember how beautiful and perfect our children were, and then try to seriously consider what sort of "special needs" child we could parent. To look at the list of medical and psychological complaints and try to work it down to a "limit" that we could live with.

I mean, WTF are we doing?

It's a lengthy process. And that's if we are approved for adoption of a special needs child (we are, after all, in principle not eligible to adopt). Then it will cost a fortune. And we still may not ever find a child who fits into our "livable" limits.

So we talked about it some more.

Then Craig confessed to me that he wants one of our children. He wants another child, but he wants our biological child. I was flabbergasted.

This is the first time that our roles have been reversed.

In my previous pregnancies (after Freyja died), Craig was convinced that our baby would die. I was not. Of course not. I wouldn't deliberately get pregnant if I believed that our baby would die ... of course not. I believed sincerely that Kees and then Jet would live. Craig did not. He was right. They died.

But now. Now I'm utterly convinced that if we had another baby, it too would die. Craig doesn't think so. He's looking at the odds. The statistics. The chances. And he thinks he can live with those odds. The 50% chance the baby would live. The 25% chance the baby would live. I'm not even convinced our baby would have that much of a chance. The only percentages I see are: 100% dead. 3 out of 3. Dead. How would a fourth be any different?

So now I'm in a complete and utter conundrum. Should we have another one?

And what on earth are the dutch doctors going to do? Will they support us at all? Will they take our fears seriously? They never did before. They only ever saw me as an overly paranoid mother.

Would we be able to convince a group of doctors that our child would need continuous monitoring and testing for at least the first few weeks (preferably months) of it's life?? Because surely they can see that 3 dead babies is not just bad luck. That it's not SIDS. That obviously there must be something. Something that they haven't found yet.

I wrote a few weeks ago about Craig's heart disease. I wrote about our cardiologist's theory of our babies having an arrhythmia. And that's something they can only test on a living person. So they were never able to test Kees or Jet.

Plus there's the chance that maybe it's something completely different. Something no-one has thought about. Something that didn't show on any of the autopsies. Something that they can't look or test for on a new baby. So, what if a fourth child also dies?

How would I cope? Or would I cope at all? Would I go even crazier than I am now? I don't know. I really don't.

If I have to choose between (i) another baby dying and (ii) no more living children, then I know what I would choose. I would choose no more living children. But then Craig says .... what if our fourth child lives? What if that child would live a long, healthy life? What if???

But I'm soooooo bloody scared. Scared doesn't even begin to cover it. I feel terrified. Absolutely terrified. More terrified than I have ever been before.

Because if someone gave me any assurances that this child would live, of course I would get pregnant in a flash. But no-one will say that now. Everyone is only too aware of my three dead children.

And that's all I can see too. So I'm terrified.

going private? again?

I've been thinking about it again. Just for a while.

I'm getting some weird vibes from family. I wonder whether one (or more) may have stumbled upon this blog. Which wasn't my intention.

Anyway. Craig and I are going through some stuff which will probably require us to go private for a while. I don't know for how long.

Not many people read my blog now. I don't have much to say any more. All the same old things.

And not many people really care. Most of the people who started reading my blog have moved on. They got their rainbow. They're too busy with their rainbow/s. My rainbow died.

And I've changed. I'm not the person I was when I started this blog. I'm very, very different. And not in a good way.

Enough of that.

This will be my last "public" post for a while.

Bloody bad luck

Some time ago I wrote about Craig's heart condition. Or disease. Because that is what it is. A heart disease.

The cardiologist found it by accident. We both had a number of cardio-tests done, and eventually we were told by the cardiologist that Craig has a heart disease.

We were shocked. It was completely unexpected. Craig is very healthy and has played sport (rugby) and refereed sport (rugby) for many years. But I digress.

We saw the cardiologist again yesterday evening. Just to recap on what he told us at our last appointment.

He thinks that Craig's heart disease is most likely to be one of two diseases. Both diseases are genetic. Which means that a genetic mutation caused his disease. It also means that he inherited the mutated gene from one of his parents.

But the thing about these two possible diseases is that sometimes the patient (ie. Craig) will never know he has it. It is only if he begins to suffer symptoms or he is specifically tested (like we were) that a cardiologist might find evidence of a disease.

And that's the good news.

The bad news is, well, many things.

This disease may not be either of the two diseases which the cardiologist thinks are most likely. The search for the mutated genes which are known to cause either of these diseases may take up to two years. And, even worse, they may find nothing. In which case it means either Craig's disease is neither of the two diseases OR there is a different gene mutation which causes Craig's heart disease which doctors/scientists are not currently aware of.

So what are they doing now? Well, Craig is on medication. And the geneticists at the hospital are checking Craig's DNA as well as Jet's DNA to see if either of the mutated genes which could be responsible for Craig's disease are present.

And best possible outcome? That they find it. The mutated gene. That they can definitively say, that's the culprit. That's the little bugger that caused our three children to die.

The cardiologist and I are in agreement on one thing: we both think that all three of our babies died of the same cause. And it has to be something which can cause the death of a child in utero, as well as cause the death of a child once born. And a heart arrhythmia can do that.

But. (And isn't there always a but.) The cardiologist says that it is most 'unusual' for such a thing to happen to such a young child. Unusual. But that just means that as far as the doctors and/or scientists are aware, it doesn't happen much. I think maybe that's only because no-one has identified it as such.

The cardiologist has said that once a person is dead, it is very difficult to see if there was an arrhythmia.

So they are testing the one living subject - ie. Craig - in the hope that they can then find the same mutated gene in the tissue of a dead subject - ie. Jet.

We may find out why they died. But then again, we may not.

In the meantime, if Craig's heart disease has been caused by a genetic mutation (which the cardiologist is fairly certain of), then he inherited it from one of his parents. And it means our three children inherited it from him.

Talk about bad luck.

It means that every child we have has a 50% chance of inheriting that bad gene. 50%. And apparently our three, well, they all got unlucky. Three times we got the bad gene.

I wonder if we'd be game to try again. To take the chance that this time a child didn't inherit the bad gene. I wonder.

And that's only supposing that the cardiologist is right. Because he's not 100% certain yet. And he may never be.

Fuck. Life is so absolutely unfair.