to borrow a phrase from my sweet mother in law. Her first language is Malayalam.
I'm up not because I am having "infertile thoughts" or greif thoughts, which is the usual cause of late night cyber-gazing, but because I have a shitty cough that won't leave me alone and it seems to be worse when I lie down. So I need to sit up.
I just watched some films on the International Infertility Film Festival with some beautiul little numbers by Mel who writes sweet sweet songs - a little bit sad too. It is good to see the energy of this journey being put into something beautiful. I made a "film" - I guess you would call it taht. I will try and put it up here one day. I made it around the one year anniversary of Maya's death. It was a film that tried to hold the tension of faith in the face of imense greif. Doubting God's love because of pain while being renewed by God-given beauty. It was a series of photos and images that I both taken and downloaded, set to a piece by Gavin Bryar called "Jesus' blood never fails me yet". The music is a voice of a tramp singing a line from a hymn "Jesus' blood never failed me yet, never failed me yet, never failed me yet. For one thing I know, that he loves me so." The sample is looped and an ochestral piece is built behind this loop into a very powerful piece that holds faith and pain and beauty.
I'll put it up sometime.
Sunday 29 July 2007
Thursday 26 July 2007
The closure of Spuds Bistro
Do you know how hard it is to find a good local in Sydney?
Well. We had the perfect one. The Harp at Tempe. Walking distance (extremely important for a watering hole), live music, nice range of beers on tap, and the all important quality-yet-not-pretentious-food at Spud's bistro, served by the affable but slightly distant Pete. It was what I look for in an evening at the pub and it came up trumps every time.
When traveling along the very bumpy and unpredictable road - life post the death of your child and inability to conceive again - one looks for landmarks to assure oneself that you really and truly are on earth and although it is much darker and harder than you remember, it is the real deal. In short, predictability. Like the kids with autism at school. Life is coming at a pace that I am not sure I can cope with, so I'm going to hold on to all things comforting and well..... predictable. Which is why it is soo confronting when the Bistro at your local changes hands. I AM SORRY BUT I DID NOT GIVE PERMISSION FOR THIS! And (because it always is about me) I take great offence at a lack of community consultation about this.
So now I feel that another one of my little props that supports me through my life has melted, dissappeared, been knocked from under me. Spud's was a garuntee man. It was perfect - the emotional comfort of an Irish stew and mashed potatoes cannot be underestimated. And the fact that it was always going to be there when I needed it was an anchor in turbulent seas.
I just can't believe that Pete would pack up and leave me like this!
Well. We had the perfect one. The Harp at Tempe. Walking distance (extremely important for a watering hole), live music, nice range of beers on tap, and the all important quality-yet-not-pretentious-food at Spud's bistro, served by the affable but slightly distant Pete. It was what I look for in an evening at the pub and it came up trumps every time.
When traveling along the very bumpy and unpredictable road - life post the death of your child and inability to conceive again - one looks for landmarks to assure oneself that you really and truly are on earth and although it is much darker and harder than you remember, it is the real deal. In short, predictability. Like the kids with autism at school. Life is coming at a pace that I am not sure I can cope with, so I'm going to hold on to all things comforting and well..... predictable. Which is why it is soo confronting when the Bistro at your local changes hands. I AM SORRY BUT I DID NOT GIVE PERMISSION FOR THIS! And (because it always is about me) I take great offence at a lack of community consultation about this.
So now I feel that another one of my little props that supports me through my life has melted, dissappeared, been knocked from under me. Spud's was a garuntee man. It was perfect - the emotional comfort of an Irish stew and mashed potatoes cannot be underestimated. And the fact that it was always going to be there when I needed it was an anchor in turbulent seas.
I just can't believe that Pete would pack up and leave me like this!
Monday 23 July 2007
Coming 'round the mountain
If the mountain is that unbearable depressions I've been in. Today i think I came round it. Scusi for citing a ridiculous song but I have just spent my afternoon creating some visual representations of songs for the kids with autism that I work with. Including that song. I carefully cut around the legs of 6 white horses (what would we do without google images?) and you should see the princess with the pink pajamas!
THe point being..... I actually felt GOOD today. Not just OK, but good. It was very strange. So strange that i actually felt elated by the experience. Maybe that is what one of the other teachers was trying to say to me. What she actually said was "you look inflated" and I wasn't quite sure how to receive that one. She did clarify by saying "well last week you looked deflated". Ahhhhh, my life as a balloon. I don't know why today was good. I mean, I have a cold coming on and got a nasty headache half way through the day. But it was just good. I felt like i knew how to do life. Not just survive it, but enjoy it the way you're meant to.
Some sweet moments from school today..... the little lovelies really got into the music I did with them. Singing "I'm being eaten by a boa constrictor" whilst pulling a collapsable tunnel up over their little skinny bodies was quite fun. There favourite was when i jumped in the tunnel with at least a couple of kids (squishy) and we all did it together. They thought it was hilarious - which was a bit of a win seeing as kids with autism aren't meant to be that social.
ONly had a tiny wee cry while walking the dog. But it didn't stick. The good mood came back.
Must be God or something.
THe point being..... I actually felt GOOD today. Not just OK, but good. It was very strange. So strange that i actually felt elated by the experience. Maybe that is what one of the other teachers was trying to say to me. What she actually said was "you look inflated" and I wasn't quite sure how to receive that one. She did clarify by saying "well last week you looked deflated". Ahhhhh, my life as a balloon. I don't know why today was good. I mean, I have a cold coming on and got a nasty headache half way through the day. But it was just good. I felt like i knew how to do life. Not just survive it, but enjoy it the way you're meant to.
Some sweet moments from school today..... the little lovelies really got into the music I did with them. Singing "I'm being eaten by a boa constrictor" whilst pulling a collapsable tunnel up over their little skinny bodies was quite fun. There favourite was when i jumped in the tunnel with at least a couple of kids (squishy) and we all did it together. They thought it was hilarious - which was a bit of a win seeing as kids with autism aren't meant to be that social.
ONly had a tiny wee cry while walking the dog. But it didn't stick. The good mood came back.
Must be God or something.
Thursday 19 July 2007
Hope for Restoration
"In that day" says the Lord, "I will be the God of all the families of Israel, and they will be my people. I will care for the survivors as they travel through the wilderness. I will again come to give rest to the people of Israel."
Long ago the Lord said to Israel: "I have loved you, my people, with an everlasting love. With unfailing love I have drawn you to myself. I will rebuild you, my virgin Israel. You will again be happy and dance"
Jeremiah 31
Long ago the Lord said to Israel: "I have loved you, my people, with an everlasting love. With unfailing love I have drawn you to myself. I will rebuild you, my virgin Israel. You will again be happy and dance"
Jeremiah 31
Did I mention I hate waiting?
Not that i am really "waiting" at the moment. I am in a way. It's the category the sweet person who neatly draws up the list of who's-doing-what on the infertility board I post on puts me in. Waiting. Again. My respite from waiting was short lived. I had a hopeful few weeks preparing for a Frozen Embryo Transfer and then the shifty shadow passed over and both little embryos didn't survive that thaw. There was a 1 in 100 chance of that one happening and it seems I managed to hit that jackpot again.
So I am back to waiting. Waiting for another chance to try to make a baby. I felt very reckless after hearing the two little frozen beauties hadn't survived. I felt so reckless that I thought I would try and fall pregnant "naturally". It breaks my heart. That baby making sex with my husband is the most reckless thing I can think to do. Forget drugs and self harm. They are soft compared to the terror that I experience at the thought that I might fall pregnant naturally..... What if I fall pregnant with another baby that will die??? I cannot live through that again. And the thought of terminting after an amnio (12 - 13 weeks) when i so desperately want to have a child..... it is more than I can bare.
But, this road also feels like more than I can bare. I want it done. Today i actually told my dad the ugliest thought I have had yet. Well one of them. I told him that if I could, I would pass this burden on to anyone, my sister, my best friend, anyone. As long as it meant IT WASN'T ME living this recurring nightmare. How many times can Hope pick you up like a rag-doll and then toss you down again. Throw you down. Kick you while you are still down. I know what the bottom looks like. I know what the taste of dirt in my mouth is. There is no more lessons for me down here.
Yesterday I did self harm. Not badly. i just cracked my head into the door frame a couple of times. It felt good actually although I ended up with a headache when I went to bed. I did it after I talked to a friend who has recently become pregnant. I love her. But I don't know if I can be with her. Nothing to do with her. It is the shitty circumstances that I seem to not be dealing with too well. And being with a pregnant person is a bit of a nose rub in the shit. I don't even feel that guilty about not wanting to be with her. But sometimes I wonder what the cost of this journey will be. if I will have any friends at the end of it. I seem to be pulling away alot. Not returning calls. Not answering messages. I keep thinking that I will get around to it but I often don't. In truth i forget people have even tried to make contact. That's bad isn't it. But when I stop to think about it, I forget a lot of things. I forget if I have taken medication, locked the door, fed the dog. I forget within seconds of doing it. That's pretty bad. Is this a sign that it is time for drugs?
It was cold today. But a beautiful clear sky. My dad came and spent the day with me again. He listened to me cry and rant again. He didn't know what to say. That's because no-one knows what to say. They all just feel sad around me and I feel sad around me too. Only I can't get away from me. We went for a long walk with the dog. I can at least say that the dog had a good day. A long walk. Lots of rolling in scratchy grass and smelly dirt, a swim in the creek, and me at home all day. The only improvement would have been if I gave him a bone. Oh to be so easily pleased. What is the secret of that one silly Tima? Is it just being dumb? I like seeing his waggy tail. At least someone thinks this world is good.
I wish it were me. I used to think that. I am even finding it hard to notice beauty around me. That is a large part of what has sustained me on this awful awful road, and i am even failing to see that.
When will this end??
So I am back to waiting. Waiting for another chance to try to make a baby. I felt very reckless after hearing the two little frozen beauties hadn't survived. I felt so reckless that I thought I would try and fall pregnant "naturally". It breaks my heart. That baby making sex with my husband is the most reckless thing I can think to do. Forget drugs and self harm. They are soft compared to the terror that I experience at the thought that I might fall pregnant naturally..... What if I fall pregnant with another baby that will die??? I cannot live through that again. And the thought of terminting after an amnio (12 - 13 weeks) when i so desperately want to have a child..... it is more than I can bare.
But, this road also feels like more than I can bare. I want it done. Today i actually told my dad the ugliest thought I have had yet. Well one of them. I told him that if I could, I would pass this burden on to anyone, my sister, my best friend, anyone. As long as it meant IT WASN'T ME living this recurring nightmare. How many times can Hope pick you up like a rag-doll and then toss you down again. Throw you down. Kick you while you are still down. I know what the bottom looks like. I know what the taste of dirt in my mouth is. There is no more lessons for me down here.
Yesterday I did self harm. Not badly. i just cracked my head into the door frame a couple of times. It felt good actually although I ended up with a headache when I went to bed. I did it after I talked to a friend who has recently become pregnant. I love her. But I don't know if I can be with her. Nothing to do with her. It is the shitty circumstances that I seem to not be dealing with too well. And being with a pregnant person is a bit of a nose rub in the shit. I don't even feel that guilty about not wanting to be with her. But sometimes I wonder what the cost of this journey will be. if I will have any friends at the end of it. I seem to be pulling away alot. Not returning calls. Not answering messages. I keep thinking that I will get around to it but I often don't. In truth i forget people have even tried to make contact. That's bad isn't it. But when I stop to think about it, I forget a lot of things. I forget if I have taken medication, locked the door, fed the dog. I forget within seconds of doing it. That's pretty bad. Is this a sign that it is time for drugs?
It was cold today. But a beautiful clear sky. My dad came and spent the day with me again. He listened to me cry and rant again. He didn't know what to say. That's because no-one knows what to say. They all just feel sad around me and I feel sad around me too. Only I can't get away from me. We went for a long walk with the dog. I can at least say that the dog had a good day. A long walk. Lots of rolling in scratchy grass and smelly dirt, a swim in the creek, and me at home all day. The only improvement would have been if I gave him a bone. Oh to be so easily pleased. What is the secret of that one silly Tima? Is it just being dumb? I like seeing his waggy tail. At least someone thinks this world is good.
I wish it were me. I used to think that. I am even finding it hard to notice beauty around me. That is a large part of what has sustained me on this awful awful road, and i am even failing to see that.
When will this end??
Monday 16 July 2007
Statistics and Fear
When you hear someone tell you "You have a 1 in 1000 chance." You think to yourself - "One in a thousand, that means I only need to have a little worry about that". But what it really means, is that 999 people don't have to worry at all, and one person not only has to worry about it, they have to deal with it. Fully. And on their own.
So here are the statistics that i live by.
3 in 1000 live births end in neonatal death. (That was our daughter).
1 in 500 people (estimated) have balanced translocation. (That's me)
If I fall pregnant naturally I have a 3/4 chance of falling pregnant with a baby that will die (during the pregnancy or birth) but only a 1 / 100 chance of having a baby that has unbalanced translocation (ubt) make it to a live birth (well.... it has been 1/1 for me).
I can do IVF and do preimplantation genetic diagnosis to see if an embryo carries the UBT. I have a 1/4 chance of falling pregnant with a baby that can live on a fresh IVF cycle, and a 7/10 chance if I get a few healthy embryos so they can freeze some.
The healthy embryos have a 9/10 chance of surviving the thaw and if they do survive i then have a 4/10 chance of becoming pregnant per embryo.
CONFUSED???????
Me too.
My problem is, I can't just ignore this kind of information like I used to. I used to be able to reign in those terrifying thoughts of "what if" with the logical response of "there is only the tiniest chance". Not any more. I seem to be hitting the jackpot each time. I AM THE ONE. The one that lives out those nightmares that everyone else tucks away "It won't happen to me" "God will protect me". So I live now with fear. Fear of all the statistics that have been given to me..... and it is not an unknown fear. I know precisely the pain of holding a little girl, my daughter, and watch the breath of life leave her. So I fear having it happen again. I fear having another child in case it happens again. I fear that I will not be able to have a living child. I fear all the statistics I don't know anything about. What are the chances of my husband dying too? of getting a terminal illness? carcrash? Don't tell me it can't happen.
How do I live fully when I am so swamped by these fears? I struggle taking my husband to the airport for a work trip. (I fearsaying goodbye) I find the risk of trying to have a baby through IVF almost unbareable. I get diahhorhea, and heart palpitations. I can't remember anything. I struggle to be with people. Sometimes I struggle to eat or sleep.
My question is, how can I be free? How do I live with this?
So here are the statistics that i live by.
3 in 1000 live births end in neonatal death. (That was our daughter).
1 in 500 people (estimated) have balanced translocation. (That's me)
If I fall pregnant naturally I have a 3/4 chance of falling pregnant with a baby that will die (during the pregnancy or birth) but only a 1 / 100 chance of having a baby that has unbalanced translocation (ubt) make it to a live birth (well.... it has been 1/1 for me).
I can do IVF and do preimplantation genetic diagnosis to see if an embryo carries the UBT. I have a 1/4 chance of falling pregnant with a baby that can live on a fresh IVF cycle, and a 7/10 chance if I get a few healthy embryos so they can freeze some.
The healthy embryos have a 9/10 chance of surviving the thaw and if they do survive i then have a 4/10 chance of becoming pregnant per embryo.
CONFUSED???????
Me too.
My problem is, I can't just ignore this kind of information like I used to. I used to be able to reign in those terrifying thoughts of "what if" with the logical response of "there is only the tiniest chance". Not any more. I seem to be hitting the jackpot each time. I AM THE ONE. The one that lives out those nightmares that everyone else tucks away "It won't happen to me" "God will protect me". So I live now with fear. Fear of all the statistics that have been given to me..... and it is not an unknown fear. I know precisely the pain of holding a little girl, my daughter, and watch the breath of life leave her. So I fear having it happen again. I fear having another child in case it happens again. I fear that I will not be able to have a living child. I fear all the statistics I don't know anything about. What are the chances of my husband dying too? of getting a terminal illness? carcrash? Don't tell me it can't happen.
How do I live fully when I am so swamped by these fears? I struggle taking my husband to the airport for a work trip. (I fearsaying goodbye) I find the risk of trying to have a baby through IVF almost unbareable. I get diahhorhea, and heart palpitations. I can't remember anything. I struggle to be with people. Sometimes I struggle to eat or sleep.
My question is, how can I be free? How do I live with this?
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