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.