America and infertility

I don't sleep any more. Instead I stay up late and the surf the internet, finding my way into bizarre websites about infertility / donor eggs / surrogacy. Most of these websites are American because the Americans talk about these things. In Europe it's all too embarrassing and nobody says anything. The details on these websites is incredible. You can search data bases of people who might give you an egg and you can put in your exact requirements. I want tall, slim, blonde woman who looks like a supermodel, speaks five languages and has a PHD. OK, feed that into the search and you'll be shown a photograph of a woman who fits that description and is willing to give you one of her eggs ..... Or apparently so. There is also a lot of details about costs - all the possible costs. Including what it will cost you if the surrogate gets pregnant with triplets and you want to abort one or more of the foetuses. Yeah, it gives you a cost for that - per foetus. Which is very precise, at least. Last night I clicked a button labelled financing and it took me into a site selling a number of different things - breast reduction, teeth whitening, getting your bald patch fixed .... and infertility. I showed this to my husband. 'Great,' he said. 'Why don't you get your boobs done, I'll get my teeth whitened and we'll buy a baby .... and then may we'll be eligible for some kind of discount.' Well, clearly, I'm taking the piss. But actually I'm deeply grateful to these websites and to the people in America who I e-mail. They e-mail straight back. They say, 'I'm sorry for your loss,' which people in England don't say. And they say yes and yes and yes. I like that very much. God Bless America. In England for the last four years all they've said is no and no and no - and then they've looked really embarrassed and hurried us out of the room.

The Almighty

I went to the Quaker Meeting House today and an elderly man told an interesting story. It goes like this. A vicar in a rural village went to call on an old man. They had a cup of tea and the old man then offered to show the vicar his garden. They went out together into the garden and the vicar was thrilled by the garden as it was stacked with flowers, fruit and vegetables. The vicar expressed his surprise and delight and then turned to old man and said, 'So what do you think that the Almighty has to do with this?' The old man thought for a while and then he said, 'Well, vicar, I really can't say. But I would comment that when this place was left to the Almighty it looked a really terrible mess.' I don't know why but this story appealed to me. It is quite typical of the Quakers who believe in getting on with it yourself, rather than relying on divine intervention.

Honey

My life has gone upside down. This is due to absolutely appalling news about my friend Honey. She was the person who started me off writing this blog - and she's been a great support to me over the last couple of years and now ....... It would be wrong for me to write anything about what is happening to her because she is telling her own story, on her blog, in her own clear, brave and humourous words ....... Her blog is called Honey Letting Off Steam and it is linked to mine. Honey is extra-ordinary - courageous, honest, loving and graceful. Thank God I am near enough to go and see her. I love her so much and I'm so privileged to be part of her life. Remember - if you do know her real name, don't use it. Send all your loving thoughts her way. She needs and deserves it all - and much more.

Days when it doesn't matter

My son just turned seven. He's an amazing child. One day, about a year after his sister died, he and I were walking down the street together. Suddenly he said to me, 'Mummy, can I say something to you?' I said, 'Yes, of course. You can say anything to me.' He said, 'Yes, but Mummy it's about Laura and I think maybe you won't like it.' I said, 'You can say whatever you want to say.' So this is what he said. 'You know, Mummy, some days it seems really, really sad about Laura but some day I just feel like it doesn't really matter at all.' I was amazed by his self awareness and honesty so I gave him a big hug and told him that what he said was absolutely right. And he is right. Absolutely spot on. I have days when Laura's death just seems huge and terrible and overwhelmingly sad. But there are also days - I admit it - when it really doesn't seem that big a deal. Days when I think, 'For goodness sake, a child is dying every eight seconds due to lack of clean drinking water in this world so just get over your little problem.......' And, in that moment, I can effortlessly bend my mind to that particularly geometry. But grief is - beyond all else - unpredicatable. I can never tell whether it will be 'an overwhelmingly sad' day or a 'perhaps it doesn't matter' day. And neither can I tell what apparently trivial incident might turn one kind of day into another ...... Often there isn't even an incident. Nothing happens but suddenly I'm in a state where the whole thing is so awful that my chest caves in and I'm gasping for breath.....

What other people want

Yesterday we went to the hospital again. They are very keen to push on us the donor egg idea. Apparently it has a very high chance of success. I can see that my husband is pretty interested in this. I've spent the last twenty four hours in tears. I phoned my Mum and she also thinks that I should be doing the donor egg thing. She tells me that the fact that the baby won't be my baby doesn't really matter at all. I think she's talking about her need for another grandchild, not what is really best for me. The truth is that I've never been anywhere near a new born baby since my daughter died. I find having to go anywhere near a hospital very traumatic. When I think about having a donor egg baby all I can envisage is lying there in a hospital bed, looking at the baby and thinking, 'No, I don't want that one.' I'm so confused and upset by all this. The choice seems to be between living with the pain of our daughters death forever - or doing the donor egg thing and finishing up with a baby which I might not want. Neither option looks good to me. Just to be clear, I'm not anti anyone else doing the donor egg thing. I just don't think it can improve our situation - and anyway it probably wouldn't even work. All we'd be doing is damaging ourselves further by creating the possibility for more disappointment.

Gloucestershire SANDS

When I moved back to England in September of last year I rang up SANDS (The UK Stillbirth and Neo-Natal Death Charity) to ask about a local support group. They told me that in the area where I live - Gloucestershire - there was no support group. I was pretty shocked. Gloucestershire has 250,000 people and it takes more than an hour and a half to drive right across it. So I decided that I would just have to set up a support group. There really wasn't any choice about it. I was exhausted by the move and I didn't know anyone here. I needed support, not the work involved with offering support to other people. But still I just knew I had to do it ..... Another bereaved Mum at school helped me and other bereaved Mums came in as well ..... And to cut a very long and tough story short ...... Gloucestershire SANDS has now been set up. The website was done for free by the husband of one of the other committee members. And last Tuesday was the first Gloucestershire SANDS meeting. It was totally terrefying. It was too close to the anniversary of my daughter's death...... But it worked. In fact, it was great. Well, as great as a Dead Baby support group can be. I know that it was really, really helpful to the people who came along. Now it is going to meet every month. Also one of the other committee members organised a ball which has raised loads of money. I don't want to sound big headed but I feel pretty proud. What I've learnt is that the line which supposedly divides the helper and the helped is so thin that it doesn't really exist. Some how I wasn't able to do anything much at all to mark Laura's anniversary - but this support group is a tribute to her.

Anniversary

Tuesday (19th May) will be the fourth anniversary of my dauthter's death. I was actually told that she would die on the evening of 18th May and then she was born dead at 3.00 the following day. So maybe the anniversary is really tomorrow. I don't know. One of the things that bothers me is that I'll never know exactly when she died. Oddly, I feel more or less OK. Exhausted and a bit shaky but not worse than that. We were in London for the weekend. We stayed at the house of friends and it was in that house, four years ago, that this whole nightmare began. I didn't go in their downstairs loo because that's where the bleeding started. I did walk in the park where I walked on that morning. The people who walked there then do not exist any more but I felt their shadows around the place. We haven't been to that house for the last four years. It wasn't a plan that we should go there at this time - just an unfortunate coincidence. Then today (still in London) we went to a big lunch party where there were lots of people with big happy families. I managed all right. I never said anything about the anniversary because those people can't really get it. None of it was too bad. It was just that sense which I often have - the sense that I am not occupying the same planet as other people. The kind of things which interest and concern other people don't seem relevant to me any more. I'm shut outside the whole thing, watching it. But I survived it. I suppose what bothers me about this anniversary is that we are still exactly where we were four years ago. Things did not move on, they didn' t change - or certainly not for the better. It was good to come back to our house this evening. I like this place, at least.

Hope and despair

I can cope with despair. What I can't cope with is hope. And hope does keep forcing itself upon me. Just recently I learnt that an old and dear school friend is pregnant. She's 43 and she and her husband have been through every hell to have a child but it never happened. Three years ago they had to give up. And now she's pregnant. I cried buckets when I found out. I spoke to her on the phone and she explained to me what I had guessed - that the baby is from a donor egg (and donor sperm). She then told me what the success rate is if you use a donor egg and it is very high ...... And suddenly I was thrown into spasms of panic and fear. I talked to my husband and he thought we should try it. I spent two days in tears at the thought of doctor's appointments, drugs, hospitals. Then I decided I'm just not going to do it. Despair is really easier. Also it is all too Brave New World for me. I certainly don't criticise anyone who goes down that route. People do it because they're desperate and I know what it is to be desperate. But no. I'm just not going to go to hell and back again for some other woman's child. Or that's what I feel right now anyway.

Help!

Well, it's a beautiful day here and I'm really enjoying it. Tomorrow we're going to a meeting about the possibility of adopting a child. And my son starts his Easter holiday tomorrow so I'm really looking forward to having more time with him ..... So things are good. Or they were until I switched on my computer and found two really horrible comments typed on my blog. It's so sad. Usually this whole blogging world is full of supportive, helpful people, with interesting opinions. But then there always has to be someone who is just really nasty. Of course, I know that a person with a badly disabled child is in a worse situation than I am ..... Of course, I know that. And I think the things I write on my blog make that clear - to anyone who is actually reading it properly. Thanks to that spiteful person for casting a dark cloud over my sunny day. But life could be worse. I also could be someone who gets pleasure out of finding people who are already hurt and then trying to hurt them further. Can anyone tell me how stop this throughly nasty person from posting things on my blog?

Survivors' guilt

I know that many people find me difficult to deal with because they suffer from survivors' guilt. They look at me and they feel awful because it happened to me, and not to them. I understand this and I ask myself, 'What is it that I need from the survivors?' I know what I usually get and that is people telling me that really it's very tough for them as well. They tell me that one of their children has learning difficulties, or asthma or impaired hearing. As I'm a polite person, I finish up offering sympathy about their child's problem. But if I'm really honest there's a voice in my head saying, 'If your child is alive then you don't have a problem.' Or I get people telling me that they had a really bad labour and their baby nearly died. And I suppose that they say that in order to empathise with me - but it really doesn't work. Again there's that nasty little voice in my head saying, 'Yes, but the whole point is that your child didn't die.' I know that's not very charitable of me but it's just how it is. But then interestingly a good friend said something quite different to me the other day. 'I look at you,' she said, 'and I just value my children so much and I just feel so, so lucky ....' And oddly that was the right thing to say. That's what I need. I just need the survivors to know that they're lucky and to say it. That's all.

Lost friends, lost worlds

I have found a friend here. She's a woman who has also had a stillborn baby. We were talking about the amount of friends that we've both lost since joining the Dead Baby Club. She said, 'I do miss those people.' I had a think about this. 'I don't miss them,' I said. 'Because after all I could ring them up any time and they might even be pleased to hear from me.' So it isn't the friends I miss. What I miss is the world in which those friends seemed relevant. I don't know why they aren't relevant any more but they just aren't. Perhaps it is because those friendships were largely based on the idea of 'having fun' and that idea has gone from our lives. A while ago I met a woman who I used to be quite good friends with in the supermarket. She was pleased to see me and said, 'You must come around.' I said, 'Yes, why not, that would be good.' And for a moment I remembered what it was like when I used to go around to her house and I felt sad for that whole world that I've lost ..... But there wasn't a moment when I considered calling her up and fixing to visit her. There just wouldn't have been any point in doing that. I wonder what she thinks. Is she completely mystified? Does she just think I'm a total bitch? Or does she partially understand? I've really no idea. I'm not that interested. Maybe she feels sad. Ah well, someone else can take a turn at feeling sad. She has three live kids and functioning marriage so I can't really spare much sympathy for her. What a horrible, horrible approach to take - but that's how it is.

Depression

It is very strange. Before my daughter died I had had four of five bad bouts of depression. And even when I wasn't actually suffering from depression I often lived in a fairly depressed state. Now I'm not like that any more. I go around cracking jokes about this. 'I used to suffer from depression but five dead babies cured me entirely.' But the point is that this is only partly a joke. Something has changed. I'm often grieving, numb, miserble, in pain, angry - but none of those things are depression. I just feel now that depression is an indulgence I can't afford. But even as I type that I hate myself for saying it. I know perfectly well that depression isn't an 'indulgence' and I know that it isn't something which some people can 'afford.' And yet it is true that I just can't allow myself to be depressed any more. Life is already too difficult without being depressed as well. I used to find all sorts of little things too much to bear. But now it seems that, because I know what a real disaster is, I can simply rise above the minor disasters. But even that doesn't adequately explain the change. I can't work it out. It is very strange.

Another uncertain mind

A lovely person called C. wrote a comment on her blog called 'An Uncertain Mind' about whether to continue trying to have another baby or not. I wanted to leave a comment but the technology didn't seem to allow it. But what she wrote really has resonance for me. It's so hard to give up trying. But I did give up and I know when it happened. It was when we were trying IVF. I was in hospital, lying in bed, recovering from the egg collection. I felt like hell - full of drugs, exhausted, in pain from the operation, tearful. I had just shouted at one of the nurses (with good reason). And as I lay there I looked up at the window. There was nothing much to see - just a few branches of a not particularly attractive tree. But some how even those few branches made me think, 'There's a whole world out there and I'm not seeing it.' And suddenly it was as though I was way above myself, looking down, and I could see myself lying in that hospital bed. And there I was, a youngish and healthy woman, made ill and pathetic and ugly by a medical treatment which I had chosen to undergo. And suddenly I thought, 'That person lying there isn't me. That is not who I am.' And for a moment I saw myself as I was when I was younger. And I was travelling in some distant place, on a boat, with the wind in my hair, staring out at the ocean, going somewhere. And that was when I gave up. At the moment when I couldn't stand the person I'd become. And I thought I was through, I thought I was finished. I thought I could start finding my way back to the boat, the wind, the joy of going somewhere. But it seems like it's never finished.

Statistics

Today my husband and I drove to Oxford (1 and a half hours away) to see a senior consultant at the John Radcliffe Hospital. We had booked the appointment in the expectation that I would still be pregant and we were not sure whether we should cancel it or not. But we decided to go. It rained heavily all the way there. I feel like it's been raining for three years. The appointment with the consultant was all about statistics. If you've lost five babies then the chance that you'll lose another is 50%. If you get pregnant at 42 then you have a 50% chance of losing the baby. If you have had a detached placenta then there's a 10% chance it will happen again but the risk is much higher if you are older. At some point I lost track of whether one of these figures is subsumed into the others, or whether I am meant to add them all together. If the latter is true then I seem to have at least 110% chance of losing another baby - even if I could get pregnant. (In another mood I might see the comic side of this). Well, the consultant was doing his best. At least he listened - which is more than can be said for most of his profession. I stopped listening at a certain point. I am very bad at maths but even I could figure out that, no matter how you add the figures up, the answer always equals Totally and Utterly Hopeless. I managed not to cry in the appointment or say bitter things but towards the end of the conversation I was beginning to lose control. As we left the consultants office, he said, 'You know there's a cafe, if you want a cup of tea. At the end of the corridor, a cup of tea.' Poor guy, we want a baby and all he can offer is a (very British) cup of tea. I came home, went to bed, cried for two hours. But after that I had to get up and make the supper and try to play the Normal Life Game. My husband and I get through the day but the grinding, grinding misery is pretty hard to bear. And there isn't really any end to it as far as I can see.

Cold

Finally I took a photograph of our new house. It looks like something out of a Hammer Horror movie, I know. I love that. It is right up on top of the Cotswolds and it is very, very cold in this place. We don't have any curtains or carpets and the heating doesn't work properly and the place is a mass of drafts ..... Yet some how it suits us quite well. We bought the house four years ago when we expected to have more children to fill it. There are a lot of empty rooms but I don't think we'd have the energy to sell it now and get something more practical. I feel like I'll remember this period of my life for ever. The cold, the silence, the long, long days. My husband has gone away for work and my son and I are snowed in here. It isn't a problem because we have everything we need for the moment. I don't see anyone or speak to anyone. I don't answer the phone. It is easier like that. If I see anyone then they'll ask me whether I had a good Christmas and then I won't know whether to say, 'Yes, fine thanks.' Or whether to say, 'No actually I had a miscarriage and actually this is the fifth baby that we've lost.' If I say that they'll look at me in disbelief. I won't blame them for that. I don't believe it either. Perhaps the thaw will come tomorrow. So many people have posted lovely messages on this blog. That helps a lot. So odd that people miles away that I've never met should be so kind. Thank you very, very much.