Welcome to this blog. This blog is a place where we can express thoughts and feelings ... maybe to share them with other like-minded people. For those who are NOT like-minded (and we've seen a few comments), please will you just leave? Your lack of understanding of our situation in life is not welcome. Please take your words and go elsewhere. For those who may accidentally stumble across this blog AND who know us in real life, please contact us directly to see how we are doing. Do not rely on this blog to inform you. Thanks!

Tuesday, December 29, 2009

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.


Thursday, December 24, 2009

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.



Saturday, December 19, 2009

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.


Wednesday, December 16, 2009

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.