A visit to the doctor

Craig and I went to visit our GP today. Our monthly appointment.

You may remember we changed our GP in August last year because the GP we were seeing was unhappy with the way things were. See this post.

Anyway, we changed our GP - but stayed in the same practice. A very nice young female doctor. Craig and I both liked her immediately when we first saw her after Jet was born and died.

This morning we walked in for our appointment and the first thing she told us was that she was pregnant.

Great. Not.

So she discussed with us that we might want to change GP's. That she understands that we might not be comfortable with her. She's right. I won't be comfortable. I'll be sad. I'll be angry. In fact I'll be filled with rage. Rage that her baby will probably be fine and will live. Rage that my babies all died. So we'll probably have to change GP's again.

She had also been in touch with various genetic specialists to discuss how we will proceed once Jet's autopsy results are known. She was surprised to find out that obtaining autopsy results take six months or longer. We're not surprised of course because we've been through all this before. She was surprised to find out that Freyja had been born in Australia. (Why, oh, why, does no-one ever read their notes/files properly??? They have a copy of Freyja's post-mortem results on file. I swear I have told every doctor I have ever seen in this country about ten times where Freyja was born. But they just don't listen.)

Anyway, she told us that the doctors and geneticists who she had spoken with had all expressed their frustrations that there is no international protocol or even a national protocol with respect to post-mortem results relating to sudden and/or unexpected infant deaths.

I was so sad. I just started crying.

Of course I know that there is no such protocol. Whether it's national or international. I know that. Of course I know that. I have three dead children. Why is she telling us this like she expects us to be surprised like she was surprised?

Doesn't she know that as parents of three dead children we know way too much about this? Doesn't she know???

Doesn't she know that I wish that every time a baby dies in the world, that post-mortem investigations should be compulsary?

Doesn't she know that I wish all the information gathered from post-mortems are done in accordance with an international protocol?

Doesn't she know that I wish all this information was available on an international data-base? A data-base which should be added to on a daily basis, whenever babies die. A data-base which should eventually answer questions. Questions which parents have been asking for way too long. Our questions, about why our children died, which may be answered one day if they have an international protocol and an international data-base.

She doesn't think. Just like most other people. She might be a good GP, but she doesn't think.

:::

On a positive note, my brother is coming to visit tomorrow.

He's broken up with his partner and decided that instead of moping around by himself in Sydney, he'd come to the cold and snow in Amsterdam. (I'm sure he's very sad about the break-up, but nowadays I always think that as long as no-one has died or is dying, it can't be too bad.)

I'm looking forward to seeing him.

It's never over

And by that I mean the following: the births and deaths of my children have affected my life in such a profound and truly terrible way, that I sometimes feel it will never end. It will never be over.

:::

We were away this week. Sometime ago, a certain international credit card company was offering a special on certain 4* and 5* hotels here in Europe, at massively reduced prices, so Craig and I decided to take them up on their offer. We went to a lovely hotel in Luxembourg city and then on to Chantilly, just north of Paris, France.

As you might know, Craig and I are widely travelled. We have travelled extensively together, but we also travelled extensively before we got together. And I've noticed that I've become a very spoiled traveller. By this I mean that sometimes we go to places or see places which others perceive as beautiful or wonderful or marvelous, but which we see as nice. That's it: just nice. Luxembourg city is like that. The LP guide-book describes it as a fairy-tale city, but I see it as just another city. Perhaps because I live in a wonderfully fairy-tale city, or because I've been to many, many beautiful cities around the world.

Anyway, our trip ended early. We drove across to France, to Chantilly, to our 5* hotel, but were very disappointed. In a typically French way, this hotel may have been 5* when they opened it 30 years ago, but it certainly isn't today. And NO-ONE spoke English. I know that the French have a reputation (well deserved in my view), but I thought that I'd gotten used to the French. It appears that I haven't. I found them rude and arrogant. And even when they clearly knew that we did not speak French (although Craig gets by), they refuse to speak anything other than French with us. In a 5* hotel. What a joke.

Then we had car problems. A hose came undone and lots of fluid necessary to the car escaped. We went to the LR dealer in Chantilly who told us (without even looking at the car) that they were *busy* and could we come back in February. Seriously. Amazingly arrogant. (It's a gift really ... I wish I had it ... that utter arrogance.)

So we decided we'd had it with France, the French and their arrogance, and drove home. We stopped at one of our LR dealerships in the southern part of the Netherlands, where we know the main guy's name, and he kindly got one of his mechanics to look at our problem. As we thought, it was a hose which had come undone. Forty-five minutes later the car was fixed and we were on our way back to Amsterdam.

We were happy to be home. Blair was happy to see us at home. We brought back several presents for him -- I believe there is a real advantage to being an only cat in a dead-baby family.

:::

But back to it never being over.

I am not the same person I was before all this dead-baby stuff began. (I say "began" because it happened again and again and again.)

I am physically not the same person. I have put on 25+ kilos since Freyja died. I always had a very slim physique, to the extent that my parents used to worry that I didn't eat enough! Ha! That's certainly not the case now. I eat for comfort. Truly comfort eating. But it doesn't comfort me. Of course not. It just adds weight to me. I'm fortunate that I'm tall - very tall - so that the kilos are nicely spread across my body.

I am mentally/emotionally not the same person. I used to be a lawyer dealing with high pressure international transactions. Working 80+ hours a week. Earning lots and lots of money. Now I get scared when the phone rings. Now I am filled with RAGE when colleagues pretend nothing bad ever happened. When they pretend that my children were never born or died. I can no longer work professionally with people who have not even acknowledged the births and deaths of my sons.

I can no longer separate the personal and professional me. I can no longer control my anger. My feelings about the births and deaths of my children override *all* other feelings. I can laugh at something funny Craig says or does, I can go to the cinema and watch a funny film, I can (sometimes) read a book and enjoy it. If I can concentrate long enough, if I really try to focus, I can do all these things. (Although sometimes I can't concentrate or focus, so then we just walk out of the cinema half-way through the movie.) But these things are fleeting. They are temporary.

The dead babies are always there. The dead babies never go away. My feelings associated with those births and deaths -- they haven't gone. They're just below the surface. I don't even need to scratch the surface to find those feelings -- they truly are just there.

A few nights ago in Luxembourg, in our lovely hotel, I was sad. It was more than sad really. I was devastated. I was devastated by the disaster which is my life, our life. I was crying and crying, and Craig was holding me, as he always does. I cried for hours. I kept him awake for hours. Because it will never end, you see. Those dead babies, they'll always be there. Always. It's never going to be over.

I am never going to get my life back. Craig will never get his life back. This is it. This is our life. And what a truly shit life it is.

And changes keep happening. I haven't been back to work since Jet died. And in a few months, my employer will no longer be legally required to employ me. So I will be fired. But Craig and I rely on that money to live. That's our sole income (remember Craig's job ended at the end of November 2009). It scares me a lot. What will we do? Will we stay here in Amsterdam? Will we go back to Australia? Will the apartment sell if we put it on the market?? The real estate market is very depressed here, and I'm concerned that we won't be able to sell for the amount we require. What will we do? Where will we go? What will we do when we get there? What is going to happen in our life?

I used to thrive on this sort of stuff. I used to be a bit of an adventurer. I used to be up for any challenge. Now I just want to hide in my apartment, pull the blanket over my head, and pretend that everything is ok.

We should never have been in this position. We should not be in this position. It's all so very, very wrong.

My career, of which I was once so very proud, and with which I used to be so happy, should not be ending like this. And it is ending. Of course it is.

Our future should be certain, not a complete question mark. I should not be living in fear of each day, each week, each month. I should be settled in my life, not fearing what the hell will happen next in it.

I am 41 years old and I am scared of life.

I feel like it never ends. It's never over.

4 months

Yesterday was four months since our sweet Jet died. Four months. Time flies. Yet I can close my eyes and remember those days like they happened yesterday.

Four months since I held my sweet Jet in my arms. Four months since I said goodbye to being the parent of a living child. Four months since I said goodbye to my children forever.

:::

As for the new year. Well it started with a bang. Literally.

In the Netherlands it is legal to buy and set off fireworks. We bought some ourselves. Only a few, because I think the amount of money which is spent on fireworks is *outrageous*.

This story states that this year in the Netherlands alone, people spent up to EUR 64 million on fireworks for new year's eve. And that's not the government, no, that's just the people.

And that's just in the Netherlands. Imagine the total INTERNATIONALLY. Bloody terrible.

What an enormous waste of money. Just think of all the research into SIDS/stillbirth which could be funded by such amounts of money ... it just makes me want to cry.

So I lay in my bed on Thursday evening and was woken by the fireworks. As you may know, we live in the centre of Amsterdam, and literally thousands of fireworks were exploding all around us. Debris from the fireworks was falling on our roof -- we could hear it clearly. And all I could think whilst this was happening was, what a shameful waste of money. Maybe my children would not have died if some of this money had been spent on research.

:::

In Australia recently, a young toddler died in a car crash. She was peacefully strapped in and sleeping in a car which was crashed into by some men who had just committed several armed robberies. This toddler died purely because her parents were driving their car in the wrong place at the wrong time. See this story. The story is entitled "Young Life Lost".

And of course it's terrible.

But what's even more terrible is that there are hundreds, thousands of babies dying all the time, lots of young lives lost, yet no-one sees their deaths. No-one but their parents and immediate family.

How come their tragic stories are not front page news?? How come?

Why isn't there more public awareness about their deaths???

Why isn't more being done to prevent these deaths?? Why isn't EVERYTHING being done to prevent their deaths???

:::

I guess I want to know why it's ok to spend millions and millions on something so wasteful and fleeting as *fireworks*.

And I want to know why it's front page news when *one* baby dies tragically in a car accident when thousands of babies are dying every year and NO-ONE is doing anything about it. People don't even know about it.

Why?

I can't stand it.

I can't stand it.

I can't stand it that I can't sleep at night.

I can't stand it that I still forget everything.

I can't stand it that I still can't focus on anything.

I can't stand it that I have nothing to do.

I can't stand it that when I have something to do, I am overwhelmed by it.

I can't stand it that I don't know what to do for the rest of the day, let alone the rest of my life.

I can't stand it that I am 110% dependent on Craig for everything.

I can't stand it that everyone else can put my children away from their minds.

I can't stand it that my babies are all dead.

I can't stand it that everyone else's babies live. Even if it's their rainbow babies.

I can't stand it that this is the rest of my fucking life.

I can't stand it that there was NO CHOICE.

I can't stand it that there still is no choice.

I can't stand it that people sometimes assume that "it" will get better. (It won't.)

I can't stand my life. I really can't. I'm just treading water. And I don't know why. I really don't.

What is the point of it all?

There is none. There is no point.

Thoughts

Lots of thoughts have been going around my head lately. I thought maybe writing them down might be helpful to me.

:::

Newsletters. When did it become "fashionable" to send a family newsletter to everyone you know?

Today we received two. One from my cousin S, and one from Craig's cousin J. The newsletter from S was in electronic form and came via email. The newsletter from J was in paper format and was (thank goodness) only one page long.

S has four children. The youngest is probably about 10/11 and the oldest is a teenager. J has two children. The youngest is 14 and the oldest is now probably about 17/18. Naturally these newsletters were all about their children. Naturally.

To add insult to injury, S visited my youngest sister earlier this year and met her youngest child. She wrote about this visit in her newsletter. She wrote in her newsletter about how "special" it was meet my sister's new child. I have no contact with this sister. I have not met this child. This child was born after Kees died and before Jet was conceived. My youngest sister has four children. I have no contact with her for various reasons (see earlier posts).

So, back to the newsletters.

What could possibly make these cousins think that we might be interested in reading pages (yes, the newsletter from S was many pages long) and pages about their children? Doesn't it occur to them that it might be insensitive to send a newsletter about their children to us?

Quite frankly, I think it doesn't. I honestly think these people don't spend even one SECOND thinking about who they should send their newsletter to. S just sent her electronic newsletter (complete with many photos of her children) to their designated email group. J included her paper newsletter with her christmas cards. They just send their newsletters to EVERYONE.

I sent my cousin S an abrupt email in response. (She sent her condolences upon hearing of Jet's death via text message, which I also find incredibly inappropriate.)

However, these newsletters only confirm (again) what I have long known.

People. Don't. Think.

So when they tell us that they "think of us often", actually they don't. We might pass through their thoughts in a fleeting manner, but they don't actually "think".

:::

We went to our physiotherapist, E, on Tuesday. We go twice a week. Craig has physiotherapy for his knee once a week, and I have physiotherapy for my back twice a week. It's a post pregnancy thing. My back takes a long time to recover after a pregnancy.

Our physiotherapist is a nice woman. She knows all about our children. Her sister's first child was stillborn at 26 weeks. She went on to have a healthy son, and a few weeks ago had her third child, a little girl. This little girl was born with a congenital heart defect, but it was surgically corrected four days after she was born.

We were talking about pregnancies and babies at our most recent appointment. E said something about how people generally expect a healthy baby during a pregnancy, but that we, upon Jet's death, must have expected his death somehow.

I just want to write this down once and for all. Although my pregnancy with Jet (and with Kees) was filled with FEAR (terror actually), I did not expect Jet to die. In fact, I fully expected him to live.

I don't think I actually know any woman who knowingly and willingly becomes pregnant with a child who she expects will die.

No. Woman. Does. That.

Things go wrong. Oh, we all know that too well. But we don't expect it.

In all three of my pregnancies, I knew all too well that things could go wrong, but I did not expect it to happen to me and my baby. I became pregnant with Kees expecting that he would be healthy and would live. I became pregnant with Jet expecting that he would be healthy and would live. In fact, I chose to become pregnant because I expected my children to live.

And you know why??? Because the doctors had told me so. They told me that there was no reason for Freyja's death. They told me it was just "bad luck". That it was statistics. That babies sometimes die for no reason. That she was the 1 in 140. They told me that Kees probably had a virus. They told me it was a coincidence that he died too. They told me his death was 1 in 40,000. They told me that there was no reason for it to happen again. They told me that these two previous deaths had no medical implications on future pregnancies. They told me there was no MEDICAL reason for me not to have any more pregnancies. THEY TOLD ME. But they were wrong.

Let me say it again. I fully expected that each one of my children would LIVE and LIVE LONG.

No woman - NO WOMAN IN THE WORLD - voluntarily enters into a pregnancy for NINE LONG BLOODY MONTHS, knowing that her child will die. I certainly did not. And I certainly did not do it THREE TIMES.

I do not have a disease. I do not have a condition. I do not have high blood pressure. I do not have diabetes. I do not have anything which makes pregnancy a risky venture either for me or for my babies. Nothing that the doctors know of. I have healthy pregnancies. The worst thing that happens to me during pregnancies is heartburn and insomnia. That's it.

So when people like our physiotherapist make the assumption that we must have been "less shocked" by, or "expecting", Jet's death, they are wrong. Very, very wrong. I feared his death. Oh, I feared his death. But I expected his life.

:::

Every night when I go to bed, I lie in bed and say to Craig that I want to go "home". Every night. Sometimes I don't say it to him, but I think it.

And it's a stupid thing to say. Because I am home. This is home. I don't have another home. This is the only home I have.

But I think maybe it's more than that. I think maybe I long for that place of my childhood. That place which is safe.

Remember when you were a child, and your whole world was like a bubble? As a child, you are protected from just about everything. Your parents create a safe environment for you.

I think that's what I'm longing for at night when I say that I want to go home. That safe place.

But of course it doesn't exist. Not any more. I was fortunate that it existed for me as a child. Too many people don't even have the memory of a safe place during their childhood.

My safe place, my bubble, disappeared forever when Freyja died. Gone in a flash. Just like a bubble I guess.

Now, every night, I lie in bed almost aching with longing for that safe place. For home. Every night.

:::

It's 3.36 in the morning here. I can't sleep.

I drank too much wine tonight. When I was younger, wine would put me to sleep and keep me asleep for about 8 or 9 hours. Now that doesn't happen any more. Now I wake up in the middle of the night with a hangover. In the middle of the night. I used to be able to drink a bottle of wine and wake up in the morning and go to work with hardly a sign of a hangover. Now I have two glasses of wine and I get a hangover. Although tonight I drank more than two glasses.

Craig doesn't like it when I drink. Because once I start, I never want to stop. Alcohol is an escape. For a few hours you can fade away. Your mind becomes less focused. You become less sharp. The pain somehow seems to become less.

It's all an illusion of course. I know that. I know it all too well. And I know myself too. I know why Craig fears me drinking too much. And he's right. I fear it too.

I was a single woman for a long time. I used to drink alone often. There used to be a stigma attached to that. Drinking alone. But nowadays so many people are single, alone, that drinking alone has become the norm. It's ironic that now that I'm no longer alone, no longer single, now that I able drink wine with my husband, now I can't do it any more. Because I'm scared that maybe one day I won't be able to stop. And that's what Craig is scared of too.

If only I could permanently live in that alcoholic haze. That haze where nothing seems to matter. But I can't.

:::

It's 3.43 in the morning now. I'd better go to bed.

20 or 30 or 50 years.

"We all carry five to ten fatal diseases in our genes. Although we ourselves may not be affected by illness, should our partners carry a corresponding genetic error, our children may be."

These are words from the opening scene from Silent Witness, Season 5, Episode 1, "The World Cruise". In this episode a professor is giving an address at a medical faculty in a university in London.

This statement is unfortunately true. But do you know what's even worse???? These five to ten diseases are only the diseases which they know about. Which they know about. There could be countless other diseases which we carry in our genes which they don't know about yet. Not yet. But they'll find them. One day.

I dream about stuff like this these days. Words like this flit randomly around my mind.

I am a healthy woman. I have no problems conceiving. My pregnancies are trouble free. My husband is healthy. His sperm is healthy. Our children are perfect. Perfect. The doctors can find nothing wrong with them. Nothing.

Craig and I have already accepted that when the results from Jet's autopsy come in, it is very likely that those results will reveal nothing. Nothing out of the ordinary. The results will show that Jet was a normal and healthy boy. Just like his brother Kees and his sister Freyja. Normal and healthy.

That's because (I think) Craig and I have something genetic inside us. I have it and Craig has it. Me having it doesn't cause any harm to me, and Craig having it doesn't cause any harm to him. Quite likely, if I was to have a child with someone who didn't also have this genetic bleep buried deep inside him, that child would live. Similarly, if Craig were to have a child with a woman who didn't have the same genetic bleep, their child would also live.

Scientists only recently started researching and mapping the human genome. Very recently. What they have found to date is only a tiny percentage of what they still need to find. What they DON'T KNOW yet is at least a million times greater than what they do know.

This means that it might be years before doctors find the nasty thing which caused our children to die. But I have no doubt that they will find it. No doubt at all.

If we consider the progress which has been made and the reduction in infant deaths in the last 20-30 years, I have no doubt that in another 20 or 30 or even 50 years, scientists will be able to pin-point certain genetic markers as those causing death and disease.

Maybe there will be a time in the future where hopefully other parents will not have to go through what we have gone through.

Update

Well, you haven't heard from me for a few weeks. I don't have anything to say. Nothing new. It's all the same. Dead babies, dead babies, dead babies.

It's nearly xmas. It's nearly 2010. 2009 has been Jet's year. Soon that year will be gone. Just like Jet is gone. Just like Freyja went. Just like Kees went.

People keep on getting pregnant. They keep on having babies. Even baby lost mums. And they don't tell me. They don't tell me that they're pregnant and then they don't tell me that they had their babies. They simply don't contact me. They cheered for me and hoped for me when I was pregnant, and they sent me a "sympathy" email (or a card if I was lucky) when Jet died, but then I didn't hear from them again. Even they (baby lost mums) want to pretend everything is ok once they get their rainbow babies. I'm just a very scary reminder of how lucky they are. And they don't want that reminder.

:::

Craig and I have been out and about these last few weeks.

We went to the UK for a few days. We took our new (used) car off-roading. My first time ever off-roading and it was fun. We got stuck in the mud and needed to be pushed out by fellow off-roaders, but that was also fun, and I was there with my camera to record the event.

We drove around Wiltshire in the UK for four days (including the off-roading) and visited lots of lovely towns and historical sites. It was COLD COLD COLD. (Our new, very expensive, car battery proved to be worth its price tag as the car started every morning no matter how cold it was.) Fortunately it was also dry, so the cold was ok. I've included a photo of us at Stonehenge -- my first visit to that very awesome place, although Craig had been there before.

:::

Then we were home for a few days in Amsterdam, which Blair was very happy about, before heading off again. This time to visit some xmas markets in Germany. That was a trip we'd been planning for a long time. Even before Jet was conceived. The plan was of course that Jet would be with us for this trip, but unfortunately that wasn't the case. Nevertheless, we enjoyed our trip. Despite seeing families and children and babies everywhere, we both enjoyed our xmas market experience in Germany. We visited the markets in Nuremberg (a gorgeous city where we experienced our first snow of the winter), Heidelberg, Dusseldorf and Cologne. Very nice and we didn't even spend too much money!

Everywhere we went, I kept seeing babies in their prams, snuggled up in their warm sleeping bags, and thinking that should be Jet. That should be Craig pushing Jet through the crowds. But also every baby I saw, if they were sleeping, I thought they were dead. They looked dead. That's how our babies looked when they were dead. They just looked like they were sleeping. That's why we can never have another baby in our house. Because neither Craig nor I could ever close our eyes again. Because every sleeping baby looks like a dead baby to us.

Anyway, we're home now. We came home from Germany yesterday. Blair was ecstatic. And other than a night away from home just after Christmas, we'll be home for the next three weeks.

:::

Today we're going to put up the xmas tree. We bought an imitation tree last year after Blair distributed pine needles all over the apartment the year before. So we're going to drag everything from the storage room and set up our xmas tree.

I like xmas with my husband. I like not being with my extended family or Craig's extended family. I don't want to see other people's children around the xmas tree opening their gifts. I don't know that I will ever want to see that again.

People keep asking us if we're "going home" for xmas. They don't realise that we are home. That this is our home for now.

"Home" is certainly not where other people's children are living and happy. Where I'm expected to share that happiness. Where I'm expected to be happy for other people because their children are not dead. Because their children are alive.

Home is here, with my husband, with my cat, where my children can be mentioned openly. Where I can cry without making others feel uncomfortable. Where my children are more than just a photo.

This is where home is, and this is where Craig and I will have our xmas.