Tuesday, 30 December 2008
Sunday, 14 December 2008
And here I am, wondering again, how is friendship possible?
I have been engaged in a serious building project, the aim is to construct a significant internal fortress, that will provide the protection and support needed to be with these women - my sisters and my friends. Sometimes it works, sometimes we can all avoid the obvious. We can chat about movies and food, good wine and plans for the New Year.
But there are some things I cannot do. I don't tell these women how it is. I don't want to sit and cry in front of them. I certainly don't want to recieve a hug from them, feeling their swollen tummy press into me. They don't tell me certain things either - quite a few don't even tell me that they're pregnant. I figure it our when it is too obvious to avoid. They don't tell me anything about their pregnancy, or even their problems, because, on the whole, they don't really compare to what I am going through. In short, we have gone from being friends to being acquaintances.
I can see them hovering around sometimes, trying to find a way in, to offer support. But I don't really let them. I am closed. I change the topic. I don't want to receive. I don't believe that they have anything to offer, because they will never ever understand what I feel. Truthfully, I don't even want to see them. It gives me panic attacks thinking about it and trying to prepare myself for those occasions when I know it is unavoidable. Simultaneously, I am sure that I have nothing to offer them except my bitterness and jealousy, which makes at least one of them angry. Fair enough I guess. Afterall, why should they feel guilty just because they can have kids that live. All the same, i feel so incredibly distant. Alone.
Add to this my anger at not being understood, at people's clumsiness around me, my scorn for the inaneness of conversations I overhear or partake in. And yes, I am fully aware of the irony in this and my participation but am I interested in changing it?
What can I give? What can I receive?
I feel so broken that I cannot do either, at least not in the way I used to.
So, what is left?
What can I give and receive?
I gave and received a hug to a women - who after three years of trying has become pregnant.
I cried into the arms of an older woman simply because she was not afraid of my grief.
I put thought and care into the Christmas present I bought for one of my neices (yes, the one born before Maya died, I struggle being with the others).
That is all I can think of. Not much, in this season of giving and receiving. Drops of water in a desert.
But it is not nothing.
Thursday, 4 December 2008
Undeserving of the support I recieve, knowing that there are others doing it tougher...... and that is before you reach war zones, which, in my head, are the pinnacle of suffering.
But your words lifted me up and here I am, on Thursday afternoon, and I am seem to be doing pretty well. If there's one thing I'm learning it's how to right myself when I have been totally tipped over.
Thanks for the boost up.
Sunday, 30 November 2008
Wednesday, 26 November 2008
Sunday, 23 November 2008
I didn’t tell many people (in real life) about this last cycle. A change that has occurred gradually in me since the death of my daughter. I used to be a confessor, and relied on the support and intimacy that confessions generate. I have found lately however, that, save for cyberspace and professionals, I prefer to go it alone. More accurately, for us to go it alone. The challenges remain pure in this way. They are not complicated by the needs and reactions of others. I can’t resent the hopeless responses of friends or family, or have my energy diverted by their need to help, their desire to “do something”. I know that others in my life will never understand my journey, and have stopped seeking that from them. It has been freeing to do this, and I feel strong, but there is a nagging tug. Dare I say it? At this moment, I feel like I don’t need friends anymore.
I got through the week, not much more than that. At least the waves of grief are familiar and I am not so overwhelmed that I cannot see, when I surface for air, the direction of the shore. I know I will be OK.
I returned to “my healer” (can’t say that without inverted comma, too much like my own personal Jesus). I told him i needed to re-inhabit my body, being a person that copes with the invasiveness of IVF by dissociating. He did footwork, to ground me. It wasn’t a vision exactly, but memory that has the quality of a dream, something comes back to you and you live that time again.
I used to do care work for people with disability. Jill had a spinal injury in a diving accident when she was a teenager. She was in her 60’s when I knew her. She had been sitting on her bum (literally) for decades, and her bum was rather over being sat upon. She had terrible trouble with complications -pressure wounds, skin break down, broken bones and poor circulation – which resulted in hospital stays for months at a time. To relieve some pressure and assist with circulation her feet were elevated so they stuck straight out in front of her when she got around in her chair. Due to the circulation problems, she had, at some point, had a toe amputation. It was a toe on her right foot although I can’t decipher if it is the second or third toe missing when I see it in my mind.
Jill was another woman ambitious for her own happiness, and knew how to find it in places most of us forget to look. She had a friend sew her up these way-out tops, floral print cotton, a tube shape with elastic and a frill around the top. A roomy boob tube. The particular joy of these tops was that you could sit outside and feel the sun on your shoulders. On blue clear days, like we had on Friday, I would shower her, wash her hair and dress her in one of these tops. We would go out in the back yard and I would brush her long silver hair, while she sat with her eyes closed and face to the sun, her wrinkled skin and head absorbing the warmth until they too began to radiate it. Sometimes I would pick a flower and put it in her hair.
Jill had a brother, Harold, who she was close too. I can’t remember if he was her big or little brother. We wouldn’t see him for months as he lived half the year in Bali doing god knows what. When he came back he had the skin of a white person too long in the tropics. Handbagged, as my friend Vicky would say. Brown and deeply wrinkled. Sandals on his feet, shirt buttoned low with a (greying) hairy chest and gold chain. He did look a bit like a dealer except for the kind smiley lines on his face.
Harold always came over with a big bag full of nail polish. He had every colour you could imagine and then some. Not only polish, but brushes, toothpicks, sticks. His wife would come out and chat to us carers or the others in the house, or help out with lunch while Harold and Jill hung out together. And their hanging out meant Harold setting out his toenail paints, and slowly and carefully, painting the nails of each one of Jill’s ten fingers and nine toes. It wasn’t just a matter of 2 coats of a chosen colour. He would paint tiny, finely detailed pictures on each nail - flowers with coloured petals and fine stalks, patterns of lines and colours, or little dot paintings. At Christmas he would paint holly or Christmas trees, bells and snowmen. It took him hours to complete and we would all rush to see when it was done.
The image of Harold and Jill in the sun, big sister little brother, painting and being painted is what came to me as my feet were being worked. It got me thinking about intimacy and friendship, giving and receiving. It provided a counterweight to my utilitarian dismissal of the gift of friends. And the image will go with me as I go back to the drawing board to figure out again, what friendship is about.
Wednesday, 19 November 2008
Saturday, 15 November 2008
Friday, 7 November 2008
Out of those 15 tested there was the one they put back and a further three have tested as either balanced or normal.
So 4/15 - which is about average (usually 30% are OK).
So 3 embies on ice. One more piece of news to go. Let's hope it's positive too and makes this (my 4th cycle) a dream run.
One more week to wait.
Thursday, 6 November 2008
I was huddled by my radio listening to the world cheer.
What amazing speeches by both candidates..... but to see the dancing on the streets, not only in America, but in Kenya, Japan and many others nations..... To see the tears pouring down the faces of black people who have migrated because they have found in other countries a freedom that they were not able to find in their own........ to hear and see a belief in hope.......
It has moved me to tears.
(an irreverent aside - I can't get the theme tune of Bob the Builder out of my head. Bob the Builder, Can we fix it? Bob the builder, Yes! We! Can!)
Wednesday, 5 November 2008
This is the story of my ovaries, my heart and my brain over the last 5 days with a late but showstopping entrance by my uterus.
My Trojan ovaries really did a stellar job this cycle. Although my meds had only increased a bit, my egg numbers skyrocketed. In total 29 were collected. A gruelling procedure when you think about that meaning my ovaries were punctured 29 times - plus a few extra in and outs with that mofo needle in order to use a catheter to drain the bladder, etc. Even my Dr (who I am very fond of and trust immensely) was surprised. As I was looking at the screen, watching the needle travel further and further to reach the next egg (I swear it was up under my navel). My Dr's head surfaced above gown level and he said "of course they won't all be mature, otherwise your hormone levels would be through the roof". People. Let me fill you in for a moment on the most important lesson you can learn as a special ed teacher. You should always tell someone what to do, rather than what not to do. Because when you say "Don't climb out the window" what you are reinforcing for the person is the words "climb out the window". "Feet on floor" is a much better option. So, when I heard the Dr. say "otherwise your hormone levels would be through the roof" what I heard was "hormone levels through the roof" which was then reinforced when he poked his head round the curtain in recovery to let me know that actually 26 of the eggs were mature. Which then translated as "your hormone levels must surely be about to go through the roof, if they aren't already".
enter (or was it exit) heart and brain, stage left
Zen master Barbie (and I had been so Zen and chilled until this point) flipped. Although excited by the increased chances that 26 mature eggs might offer, I convinced myself that I was about to get OHSS. Which is weird cause although I have done 3 cycles previously this has never even crossed my mind. I've always thought my Dr was so conservative and safety conscious that none of his patients ever got OHSS.
If the static energy being radiated from my head was visible it would have looked like a giant plasma ball. I am sure if harnessed and used as an energy source I would have saved tons of emissions.
Let's just say I ended up on the doorstep of my shiatsu therapist two days later and burst into tears when he opened the door and went "Barbara?"
And I left school feeling rotten on Monday because I mistook a little panic attack as OHSS symptoms (well how would I know? I've never had either.)
Weirdly though, I was fine on Tuesday. I went back to school, having figured out the my body was doing just fine, and my head, considering the pressure it was under, wasn't really that crazy.
I got a call in the morning (in between chatting to parents at the gate) to say that 5 embryos were ready for biopsy. (For those techy people interested in why I'm doing PGD on day 5 instead of day 3 look here). I got a call to say what time I would get the results while trying to herd my little autie kids off the bus and towards the pool entrance. (I'm great at using all limbs to help shepherd kids in the right direction). And then..... the call with the results.
When they do day 5 tests they like to put the healthy embryos back ASAP. What normally happens is that they get you to loiter around town near the clinic at the time the results are expected back. The clinic loiter rates highly as a Bad Wait in a run of bad waits. You've come into the city (on Melbourne Cup day no less - it's all about office workers having boozy lunches, feathers in the hair, wearing pretty or laddish outfits, and betting too much on horses you know nothing about), found a park (and lady luck was on my side - not in the sweep I had entered, but as my personal parking assistant. I got one directly in front of the doors of the clinic), then you get out of your car and a) loiter, b)sit in a cafe drinking decaf c) sit all tight arsed on the edge of the very stylish lounges in the foyer of a ritzy city building. And WAIT. FOR. THE. PHONE. TO. RING. Then, as soon as the scientists have done their thing, and talked to the nurses, the nurse calls the doctor and the patient to let us know IF IT'S ON. Which it was yesterday. Apparently lady luck was in the petri dish as well.
We met the Doc in the lobby - he'd been running. He was sweat soaked with a singlet and running shorts and sneakers. Out of professional politeness we took a different lift to him although when we met again on level 4 he'd pretty much just washed his hands and chucked a surgery gown over his exercise gear, which I kind of liked.
And well - you know how the rest goes. A blood test. A wrist band. A talk from the scientist, the embryologist, the nurse and the doc (whose Scottish accent is rather like Shrek's) "Leit's doo it".
enter the diva lady uterus, shining in her sparkly progesterone supplements
And then it was done. Or in.
S/he was a good looking hatching blastocyst when shown to us on the screen.
And no doubt s/he'll be a good looking teenager one day too.
My two week wait has been shortened from 11 to 10 days for the convenience of the clinic (which makes me why it isn't always 10 days). I'm sure there is reasons.
So, hopefully the last of the waits for a very very long time.
Oh - and for the rest of the techy details. 3 that were biopsied were "unbalanced" which means that if they continued to develop into babies they would die (like Maya), and 1 they were unable to get a result for so are testing the cells again today. They also tested more in the evening and more today so my nurse will ring me this afternoon with all the results and maybe we will even have one or two healthy embryos to freeze.
Friday, 31 October 2008
24 have fertilised!! Oh my.
Waiting for day 5 to do testing (PGD) to see if any can live.
It's all been a bit too easy this cycle. It makes me suspicious.
For goodness sake I only had 2 ultrasounds.
wait and see. wait and see.
Tuesday, 28 October 2008
Wednesday, 1 October 2008
Are we built to forget the experiences of pain?
It was only two and a half years ago that I too, came home after holding my new daughter as she died. I know the horror of the nursery set up. The mockery of a mobile, swinging and playing tunes. The unbareable ache of empty arms, longing for a burden ever so light.
I know these things. I KNOW these things.
But when I look at someone else IN these things....... I have nothing.......
I want to warn them, to let them know that it will likely get much worse before it begins to get even a tiny bit better. But I know no-one wants to know this.
I want to let them know that they are not alone... while knowing, when it comes down to it.... we are all terribly alone in our greif.
I want to let them know that they will survive it, while knowing that their may well be a part of them that does not want to survive it. Because sometimes death has such beauty, and holds something so dear, it does not seem an enemy.
I am left a floundering fool - like the others whom I looked at with disdain - because I have nothing to say except those tired tired words that have well and truley crumpled under the weight we expect them to carry "I'm sorry". How can that give anything? Like this post, it is about me, not them.
But I am sorry.
Little Silas I am so very sad.
Friday, 26 September 2008
When holding your daughter as she is dying, and after she has died, you find out if you have faith.
I found out I do.
What exactly that faith is, or is in, is still quite unclear. But I believe.
Today. I am on my knees, weeping with gratitude.
Today. I know what makes the world.
Today. I know that LOVE is the only force powerful enough to create.
Today. I know that every single created thing is made in LOVE, and is LOVE.
Today. I know that my job in this world is to see this, and to carry on the job of creating with love.
Each blade of grass is profound.
The beauty of light hurts my heart.
I will plant a garden.
Today. I know that I know what love is.
A mist has descended. It weighs on me. Heavy. Heavy.
I cry and it muffles the sound. My wailing sounds distant. A cry from ancient times, a legend I once read, about a woman whose only child died. She longs to be enveloped by the earth that holds the core of her. She goes down into it, away from light and voices.
Can you see me? Can you give me a sign? Do you know how much I can love? Do you see my pain?
Please God. Please. Please. Please. Please. Please.
Buried so deep, hiding so well, nothing can touch me. Not the coolness of the ocean, or the the way the new leaves shine like silver. A death of the heart, and of eyes that choose blindness, and ears that prefer silence. Giving birth to a rising panic. What is this place? Is there still further to fall? Will this be the death of me?
But somehow I am found. A baptism, while swimming naked at the bottom of a waterfall. Thanksgiving rising with me and the bubbles. I shout "YES! YES!" and laugh, when snorkelling the next day, because I can hear the ridiculous noise of a parrot fish munching on coral.
And like in a good Irish hymn, I can sing from the middle of the shit, that I am OK. I haven't triumphed, turned the fates, won the victory, and yet, I know that it is well with my soul. Even in death.
This is my faith.
Friday, 19 September 2008
Yes my fragile little happiness is growing very slowly but surely. It has become a little sturdier, and while it gets knocked over relatively easily, it bounces back in a fairly short time.
When people ask me how I am I have stopped saying "OK I guess" or "not tooooooo bad" and have started to say "pretty good actually". Which is pretty good actually - don't you think.
I don't know what has happened. It's a miracle to say the least. And I put at least some of it down to the choir I have been singing in, and the circus classes. Did I mention how much I love circus?
My other sister (not the one who just had a child) but the one in the middle - she is also pregnant, and about to get married. Which is great for her cause she is 35. It was an Oooops thing. Although I'm yet to figure how two 35 yr olds ooopsed their way into that. I think it involved serious denial, Christians and all.
I won't go into all that commotion - the point is - this is something that could really tip me over. I'm organising her hens party today (a picnic tomorrow), and the wedding is next week. And, listen up peoples, I'M OK.
So there you have it.
Thanks again to those who have been checking in.
It means alot.
Do you think it is OK to do circus classes while doing a cycle? It's all about your core muscles getting serious workout. Feet tangled in the tissue - hanging upside down and attemping sit ups - that kind of stuff. Like uber pilates.
Saturday, 9 August 2008
Look at that. I sincerely didn't think I would be writing that for a good few years. But there it is. That mundane, commonplace word. And what a delight to be reacquainting myself with it. I'm clapping my hands cause I'm happy and I know it.
I have been feeling like Charlie - pre chocolate factory visit. So deprived that when a bar of chocolate comes to me on my birthday, I treasure it as more precious then gold. Taking it out every now and then to look at it, eventually tearing off the tiniest bit of wrapper, nibbling a bit from the corner, tasting it's sweetness and then putting it away because I need to to last. *Happy* has been my precious chocolate bar.
For the last two and a half years, each time I have had a happy moment I have been conscious of savouring it - turning it over, trying to pull it out in the crap times to remind myself that it does exist. I would say I have become good at getting mileage out of even the smallest bit of Happy. I hang on to the memory of the feel of the sun of my shoulders, or the smell of the ocean, and try to make these little pieces of Happy carry the huge weight of my sorrow. Unsurprisinngly, they often sink under its weight. (OK so now I'm really mixing metaphors -chocolate bars/life bouys-but are you with me?) I make each piece of Happy go a very long way.
But look at this week's list of Happy:
Tuesdays circus class - Check
Taking my 3 yr old niece out for the day on her birthday and decorating her cake with paper shapes and icing sugar - Check
A boozey dinner followed by whiskey and watching The Opening Ceremony - Check
Watching Tima (my furry friend) retrieve his stick from the ocean and accidentally body surf back to shore - Check
Sydney sun (even in winter). It's all gold and blue today. - Check
Lyrics Born gig - Check (well that is tonight but I already know it will make me happy)
Not quite a chocolate factory but definately enough to gorge on in a week. Fortunately, unlike chocolate, too much Happy does not make you feel crook.
There is no reason to explain this showbag of Happy - there are many things going on that could have tipped me into more months of heartbreaking sadness - but I just don't want to let these things do that to me anymore. I have developed an almost ferocious ambition for my own happiness. I WILL BE HAPPY. Damn it. I f*** in will. I am.
You watch me be it.
Friday, 1 August 2008
Monday, 7 July 2008
Hope is something that we all think we know what it is. Most people think that hope is a good thing, that we can't live without it. But us baby-less people know it as something else.
Hope is a monster.
Nothing makes this clearer then doing an IVF cycle. The very fact that you are doing an IVF cycle is a statement of hope. You are doing all you can to make real the hope of bringing a little person into this world and your arms. But for those of us who have been burnt a few times by this, that hope comes with a great amount of fear. We want to be hopeful, be positive, and at the same time protect ourselves in the event of failure. Managing hope is an exhausting process of hedging bets both ways. Of opening yourself up to possibility and shutting yourself down to disappointment. The process of wrestling hope also includes a strange entanglement with superstition.
It goes a little something like this.......
I need to be hopeful. It is important that I be hopeful. How can this possibly work if I don't think positively about it. I have to be positive for this to work. But what if it doesn't work. What if I have bought the lie and then have to pay the price. Maybe I will just pretend this isn't happening. I will go to the clinic and pretend the blood tests are for something else - to donate blood. I'll ignore that bit of the day where I have to give myself injections and just pretend, pretend, pretend..... and then maybe it will sneak up on me. Catch me by surprise. Yes, pregnant, Yes, delighted. Surprised! / No, no, I'm doing just fine. I never expected it to work anyway.
It is true, the amount of hope you have for a cycle does effect the crushing disappointment of a failed cycle. The higher you climb, the harder the fall. Last cycle I believed I was pregnant. For gods sakes I started lactating! The changes I felt in my body were real, so I believed them. Sadly, they were real changes that came as a result of injecting hormones into me, not as a result of being pregnant. The despair of the last failure was extremely bitter, and I am still coming to terms with it.
So I have this little flame of hope. The wind blows and it becomes a raging fire during an IVF cycle, and then my period comes and a fireman with a wet blanket starts beating at the raging hope. Smacking it into place. Suffocating it. Until, once again it is a tiny ember. Precious, suffocating, almost spent. I look at my little ember of hope and wonder if I have the courage to nurture it back to a fire, and face the chance of it being beaten again. Maybe this time it will finally be put out. Is that what the end of the road looks like?
People who want to "give you hope" have no idea what the hell they are talking about. That kind of hope is high risk, terrifying to the extreme, and could possibly kill you.
But I have had a different sense of hope that is growing alongside this. This hope is not like the fire that gets whipped into a fire storm and then beaten back down to a tiny ember. No, this is a very different kind of hope. And I think it is secure enough for me to build something on. Let me tell you the hope.... I have to whisper it because it's still tiny........ but it is this:
Friday, 6 June 2008
Saturday, 31 May 2008
Wednesday, 21 May 2008
Thursday, 15 May 2008
Monday, 12 May 2008
I got a lot of calls from people. They went like this.
"The Drs all thought my kids were small and they were at least a pound heavier when they were born." (Yeah but you didn't have to go in to the head of Obs at a major hospital every 2 weeks)
"Have you eaten enough?" (I thought I'd rather keep my figure and starve my baby)
"I was so small my mum had to use a face washer as a nappie"
"She was only 500gm when she was born and now she is doing OK"
When Maya was delivered - an uneventful c-section which I found unbearable, she was moved into high dependency and then into the NICU within 12 hours. These were the stories I was told
"You'll be laughing about this when she is 13"
"It's in the range of normal"
When Maya died, these were the stories I were told.
"I know a woman whose sister's first born died and now they have 7 kids"
"I know someone who had a child die and now they have three beautiful healthy children"
When the IVF started it was
"So and so is an IVF baby. She got pregnant first go." (Yeah but did she have a balanced translocation?)
"It's only a matter of time" (as if there was no cost to a failed IVF cycle - only time)
You can imagine how many IVF stories I have been told.
These days, the ones people tell me are like this
"... and then on their last possible attempt they concieved, and now they have a beautiful child."
I'm also starting to get adoption stories.
These stories have always given me the shits. It is the unwillingness of the listener to actually listen. They already know the outcome. It happened to a friend of a friend. They have raced ahead to the end of the story, which, they are sure, is a good ending. A few months after Maya died I started telling people how unhelpful their stories were. Which kind of throws people. They think they are giving hope, when in reality they are trying to make the moment more comfortable for themselves. Or else I say "that's nice for them".
How I have longed for someone to stand with me and look realistically at the present and the future and say "Fuck. That really sucks". I have wept when people have done that. It is a great gift to allow yourself to feel the horror and fear of your friends uncertain future. To stand with that person in the pain of the past and present, and confusion of the future, and resist the temptation to try to make it better. How come so few people know this?
Thank you to my friends who have the wisdom to do this with me.
Of course the irony is that while I hated my friends telling me these stories, I would go home and spend hours on the internet looking for a person with the same balanced translocation as me, and trying to find out how many children they had out of how many pregnancies. Which is a little different I know, but still, I too am guilty of trying to write the end before it is time. Of not having the courage to stand and look at the hideous uncertainty of a pretty equal chance of things going right and things going hideously wrong, again. Well in truth, the research tells me the odds are tipped in favour of hideously wrong, but there is still a good chance for things going right.
I wonder what stories I will be told in the future?
I wonder what stories I will dole out to others in the name of "giving hope".
All anyone wants to know is that they are not alone. That someone else knows.
Wednesday, 7 May 2008
Ali tries to be a saggy bottom boy.
Chasing an ominous black shadow in the water. Turns out it was a seal swimming in the waves.
outing the fire.
mmm. fire pancakes.
So. It seems the east coast has a lot to offer in terms of healing. Far Nth Queensland to the South of NSW.
I'm glad I get to live here.
Friday, 28 March 2008
A week or so after the shower incident letting me know that I most certainly WAS NOT PREGNANT, I started lactating. And I have to say it was/is pretty confronting. Not horrible leaky kind (like after your baby has died and you stop expressing) just a very distinct feeling in my breasts and an urge to check if I was lactating. Which I was. You can understand that it kind of threw me.
I visited Dr Google and typed in lactating while not pregnant and got pituatary cancer, benign cancer of the brain, menopause.
Which is a good reason why you should never visit Dr Google.
I rang the clinic and the nurse said "that can happen sometimes". CAN IT???? I don't get why injecting estrogen would make my prolactin go crazy.
And I get starving hungry (which I am sure is hormonal) so when i was racing past a teacher (who is pregnant) at 8.30 am with a packet of chips in my hand and some salty crumbs around my mouth, she asked me if I was pregnant.
DO YOU THINK I WOULD NOT KNOW IF I WAS PREGNANT AFTER HAVING A BABY DIE AND 4 ROUNDS OF IVF?????
I simply said "No I am not" and went home and took another pee test to confirm it. Definately not. I even dug it out of the bin half an hour later even though technically I would be 7 or 8 weeks and an early reading pg test should show positive in about 0 seconds if I was pg. I still wasn't.
I have become very effecient in my grief. I can now fit a good half hour wail (literally) in between the coming and going of two sets of guests, or between arriving home from work and leaving for a social engagement. I've given up trying to look after myself at those points. I mean, I could send the guests away but I would stay miserable and if they arrive I have a better chance of not being as miserable for as long. So I sit and stare for the first 40 min and after a while I just join in. There is only so long you can maintain the intensity of feeling absolutely miserable.
Which is not to say I feel happy. Or I do in some moments. Minutes, hours even, but never for a whole day. Never for days at a time. The heaviness always comes home to roost - settles itself in my chest again, clucks about creating noise and discomfort.
I still wish I hadn't experienced any of this.
I just wish it was someone else and not me.
Yesterday I thought that nothing seemed important to me anymore. I don't have anything to say about anything (except my pain). It does not seem important. I don't get uplifted by seeing something beautiful. What meaning does it have. My husband and I are going parrallel but both seem stuck in our own depression and grief this weekand don't often connect in that. Which is a pretty bleak place to be, and I get scared because after years of grief these feelings seem to be stiffening into a more permanent part of my character rather than a transient feeling that I know is just something I am passing through. That scares me.
Perhaps the fact that I ran inside to grab the camera and take this photo this morning means that is not the case. It was enough to excite me and make me feel like the day had something in store.
It's a rosella in the gum tree I planted which is now in flower. There were a pair of them, sipping nectar out of the blossom. I only managed one picture before they flew off but I hope they come back.
Thursday, 13 March 2008
But you will see a lot photos of him eating, me eating, our friends eating, the food we make, and the scraps after people have eaten the food we make.
Can you tell that food is a hot topic in our house?
I was very impatient with one of the kids at school today. He keeps sticking his hand down my top and tugging at my bra.
So the internal dialogue goes like this
Good Barbie " It's a way of trying to communicate, what is he trying to tell me?"
Bitch Barbie "back off and STOP TOUCHING ME"
Good Barbie "Maybe he's not coping, maybe the work is too hard, maybe it's too boring"
Bitch Barbie "Why don't you just SPEAK to me. There are these things called words and they work for the rest of us. We don't have to pull clothes off each other"
Good Barbie "Hey little Mister. Why don't you grab this elmo doll instead"
Bitch Barbie (and todays winner) physical wrestle to untangle kid from my clothes and get him to sit down. Shouting "NO" in a startling manner.
(times that scenario by about 10 and you have a little piece of my day).
Yeah - there are days when I feel like I really could improve quite a bit at my job.
The weird thing is, I forgave myself for being like this when I was in the middle of the IVF cycle and had that mountain of stress. But it does not seem OK to be like this now. And today is not even a cry day. No tears today, just a run of the mill, life-after-your-baby-has-died-and- a-string-of-failed-IVF-attempts kind of a day.
I had a great massage last week. It released so much sadness and I had to do a lot of weeping for the next few days.
But it grounded me somehow. It was one of those great moments when you are so vulnerable that you will trust anyone - and somehow - this person was just the person to trust. Not that I spoke with her beyond "I'm really sad" but I completely gave myself up to her care. Her hands and my body had a heartfelt conversation. And she undid something, and put something else back together. And then she pulled something out and shook it from her hands and it left me. It wasn't the end of sadness, but it was a beginning. I had strength to enter my grief. To let myself live the aching pain of hope gone dry, again, and know that I will live beyond this too.
Sunday, 2 March 2008
Saturday, 23 February 2008
Yep. You betcha. Got the call at 4 in the arvo to say they did the testing on the 3 little embies (it's starting to sound like a nursery tale) and one was NAD. That means no abnormalities detected. Which means it can live! It has the same chance as any little embie going into a body of growing big. So by 4.3o and after a mad drive into the city it was done, or, I should say, in.
We waved at it on the screen and welcomed it to my uterus.
Now the 10 day wait (it was a day 6 transfer). But I can't believe we made it this far.
We may even have a 2nd emby in the freeze - well it has been frozen but when they did the testing, 2 of the cells showed that it was normal and one of the cells did not take the dye which shows up the particular chromosomes we are looking at. So they are trying to look at it again on monday. They have frozen it because there is a good chance it is normal.
The 3rd one sadly, we say goodbye to. If it grew inside me it would be like Maya, beautiful, but not bound for this earth,
I can't believe how good it feels to have good news instead of crap.
Click heels together.
I know you are thinking that I shouldn't be celebrating yet........ after all, I have only just started the wait, but join with me. It is a miracle to get this far. I will deal with the future when it arrives.
May it also be good.
Tuesday, 19 February 2008
On friday I find out if there are any healthy embies to put back inside me.
On friday my neighbour is booked in for a c-section.
There are only 3 embies still going strong..... do you think one of them might be able to grow into a little baby in me arms?
Monday, 11 February 2008
My dog's paw is better. He's not quite his handsome self due to a rather large and pinkish scar on his leg - not to mention the shaved bits that haven't grown back, but all in all he seems to be returning to his doggy self. And our walks have become the usual mixture of delight and apolgetic shuffling on (he tends to get a bit snappy at certain dogs despite my best behaviour management strategies).
So dog is on the mend. First box ticked.
My dear hubby who was so unjustly fired will finish work this week. I am very proud of him as he has made the transition from righteous outrage (justified I might add) to forward looking job seeker without sinking into a trough of negativity and depression which would probably have been my option if I had gone through that. I forget that he is stronger then I think he is. I just hope that the union lawyers kick ass. I would like to see the evil people who made this decision SQUIRM. In an act of self preservation and solidarity another member of staff is leaving on the same day. For a team of 5 it now looks a bit on the nose to have 3 positions unfilled.
I'm on Day 11 of FSH and looking to be going for a few more days. Did i mention how shit my body is at responding to hormones? I am questioning why my doc did not put me on a big mamma dose of hormones. I think he is kinda conservative. I bet none of his patients ever get whatever it is you get when you're overstimulated. Anyway, not only am i responding slowly i seem to be responding poorly (for me). I've seen enough ultrasounds to know something and despite the cheesy smiles of the sonographer I know that there are a lot less eggs then last time. It feels like my body is rather unimpressed with this whole business and has decided not to cooperate any longer. I used to be the best at giving blood - but now, my little old veins give a polite "no thanks" before being held at needle point and forced into giving up their luscious flow. They bruise in protest. And my ovaries, no matter how much singing and patting, kissing (my hubby does that one - too hard for me) and coaxing, just don't seem to want to give up too many precious little eggs. I confess I have unjustly thought violent thoughts towards my ovaries after former failed cycles but I was hoping that they would be a little more forgiving.
I've noticed that it only takes me hours to detach myself from myself and speak in the third person about the me that was on the bed weeping and begging heaven to have mercy just a few hours ago. As if it was a long time ago. The old me in a different time and place. Who am I kidding?
I'm kind of sick of feeling like a dead weight around people. My friend returned from a conference in NZ yesterday and I have, in truth, not been doing all that well. I rang her up to see if she wanted to go for a walk.. and she said yes because she knows that I have not been doing all that well and then rang back and asked to postpone it as really what she needs is to sleep after being away for a long time. The only thing that bothers me in this interaction is the thought that people might feel like they need to give to me all the time..... even though I feel so desperately needy all the time...... I don't want to be a person that requires "energy" to be around. So I try and section off not-coping me and do this weird thing of talking about those times or moments as if it is another person. As if I had a really close front row seat of watching someone else go through excruciating pain and confusion. Which in a weird way is what I want. I WANT SOMEONE TO KNOW. Not just that I am having a bad Sunday but that Monday and Tuesday and Wednesday weren't very different. That even in my sleep I can't escape this because it occupies my dreams.
I dreamt I was holding a dead baby and then the babies face turned into Maya's face and I gave her mouth to mouth and she came back to life.
That one was a nice one.
I have started going to a church. I like this church. It has a lot of tradition and does a sung communion each week. I like this because there is a lot of beauty in it and I like the physicality of participating in communion. Of being on your knees, holding out your hand. Of receiving the gift of the sacraments. Of singing a response which is both haunting and uplifting.
But I loose it most weeks. It is a space where it is OK to loose it. I am sure I have cried my tears into the communal cup which is a nice metaphor in a way...... last week I lost it quite badly as my friend arrived with her new little baby girl. The one I have talked about previously. It really really does hurt to be around and no matter what self talk I use it remains a heartbreaking experience to watch someone else be a proud mum for the first time and think that the time I held my little girl in front of others was after her death. In fact, I don't even think. I. Just. Cry. and feel that deep ache inside my chest which has not really changed with time....
I am loosing hope for this cycle. It seems easier to give up hope now then to try and fan it back to life and then have a bucket of water thrown over it when I get my BFN.
Ain't that a sad thing.
I just spoke to the friend who was in New Zealand and did not speak about myself in the third person rather just broke down and unapologetically hogged the space until I was in a place to stop and listen to her and how her trip was. Later I said I was looking forward to being in a place where I wasn't so needy all the time. She assured me that that was not how she saw our friendship at all.... which was nice to hear. I think I believe her.
Friday, 1 February 2008
But in a similar (less violent) messiness. I did sensory play at school with my little autistic friends. "Sensory Play" is the name we give it to make it sound legit. It involved covering one desk in shaving cream and putting marbles in it, putting out a big bucket of rice with toys in it, putting out a big bucket of soapy water with toys in it, covering the floor of a corner of the room in packing filler (you know those little styrophoam bits), putting out a foot spa, and putting out a tray of tiny shells to run their hands through. It was great. This kid just went up to the massive pile of shaving cream and scooped up a handful and rubbed it all over his uniform and then all through his hair and over his face. He he heeeee. I know how to give kids a fun time. Another one just stuck his hands in the rice and started chucking it about. He liked it falling on his head and watching it bounce on the floor.
As you can imagine the room was a little messy when we were finished. But that is why we pay for cleaners. The kids were very happy, and once the froth had settled, they were quite calm too.
I am angry because my friend (the one who had preeclampsia in the last post - delay in the induction) just had a baby girl in the hospital I had my baby girl in. How can it not hurt?
Tomorrow I am doing this - without the extras of a clairvoyant and Rob Dekota. It looks a bit tacky but truly, you haven't seen Pittwater. It's amazing, and sitting on the deck of a boat looking at that scenery can only ever be uplifting. And I think swimming in the boom net could be fun. (yes. I have just learned how to link other sites)
Tomorrow is Day 2 of FSH.
mmmm......... I wonder.
Wednesday, 23 January 2008
I took Tima to the vet (as I have been doing everyday) and his wound is looking pretty awful. It aint doing what it should be doing.
I had my first Lucrin injection. (I think that it is like your Lupron)
My husband got fired - completely unfairly (he asked to continue part time while we are doing IVF and they fired him).
I am making dinner and will take it over to our good friends so we can talk.
Our friend told me she has preeclampsia and has to be induced tomorrow. I hope she is OK.
As little Annie says......
Tomorrow is another day. (Is it Annie?)
I'm just not up for too many of these days.
Monday, 21 January 2008
A note for those in other countries. We have a lovely public health program called medicare here in Oz. The latest is that medicare (ie the federal gov) will pay for 80% of all medical treatments once you have spent over $1000 in one calendar year. This does make IVF much more affordable as most of it paid for by the gov. It also covers specialist treatment as long as you have a referral from your GP. Hence my need for these referrals.
So, back to the three referrals.
No 1. A referral to my IVF doc.
No 2. A referral to my psychologist
No 3. A referral to a psychiatrist.
Is there a connection you ask? .... You Bet.
But I am trying to understand it. I really like the psychologist I have been seeing but I went through a stressing stage and was thinking "there has to be a better way of living through this". So my GP suggested a shrink.
So we all know what the referral to the IVF doc is for but what is the difference between the other two?
My psychologist treats me as a well person going through a really shitty and stressful time. Last time I was there I looked her straight in the eye and said "Am I doing OK?" and she looked me straight back and said "Yes". I know that she is a believer in self talk and the importance of these types of thoughts: "I will get through this", " I can survive this". "There will be a time when I am happy again". So part of me knows that she believes that it important for me to believe that I am doing OK. That I am traveling well with this.
This week I went along to the psychiatrist I was referred to and he has basically said that I have anxiety, depression and PTSD. Quite a cohort of unwellness. He thinks I'm stuck somewhere in my grieving process about Maya which triggers the unbearable pain I feel when someone tells me they are pg. I see a new-born. I go to the birthday parties etc...... You know, the equivalent of a Nam vet. diving for cover when a car backfires because it takes them back to the jungle.
So my question to myself is....... Am i well or unwell? Have stressful events triggered anxiety and depression or am I just stressed and sad? Are my response to my circumstances inside the range of "normal" or am I really really not coping?
I'm not sure that I have anxiety. But I am anxious and I feel it physically. When I have spoken to my friends about anxiety it seems that it centres around going to extremes in your mind. Letting remotest possibilities have more weight then likely outcomes. But it is not the worst case scenarios that are pursuing my thoughts....... or should I say it's not the remotest possibilities that my pessimistic mind can think up. It is the most likely thing that terrifies me. We will do IVF and it will fail again. I mean I have a 1 in 4 chance of it succeeding so most likely it will fail. It is not my mind taking me off on wild journeys of extreme pessimism that is causing the anxiety, it is plain old looking at what is realistically in store. Besides, when you've lived through possibilities worse than an anxious mind could have conjured..... well...... statistics aren't much of a comfort anymore. The worst did happen.
So I tend to think that I am coping. My evidence is that I manage to work (and do it well), and I participate generally in life. I don't usually stop doing things because I am feeling really bad - just occasionally.
The evidence in favour of the anxiety and depression is that I don't often feel happy - more just a lessening of "the weight" - but it never goes away completely. And I usually feel at least a bit nervous and often quite nervous. And occasionally I wake up with my chest so tight it hurts. But I have also talked to friends about this and it does not seem that uncommon. The other things about the PTSD is that I know that my grieving process took a serious left hand turn when I found out the death of my daughter was caused by a chromosomal problem inherited from moi. That changed the shape of my grief a lot. Perhaps there is still unresolved things there....
I find it hard to get perspective......... but I know that others find it as hard as me.
And this is my main reason for thinking that I'm not doing too bad. It's just a really shitty road.
I'd be interested in your experiences with different sorts of therapists and what you found helpful.
(But don't feel the need to comment on my wellnes or unwellness - I think I'll have to figure that one out on my own.)
Thursday, 17 January 2008
Now if that doesn't make you go Ohhhhhhh! You officially don't have a heart. You are clinically dead.
He has a lot of staples in his leg where a lump got cut out.
He has stopped wagging his tail and gets around with it in between his legs and his ears back.
I hope he gets better soon.
Thursday, 3 January 2008
If I were to send one of those...... a truly honest one....... it might look like this.
We hope this letter finds you well (although being too happy is a bit gratuitous and I don't want to know if you are pregnant).
2007 has been a year of joy and crap. Mostly crap but there are a few miracles to celebrate within. Most importantly the fact that I have not descended into madness and that we continue strong as husband and wife despite the pressures of our circumstances on our relationship.
The year started with a new job for me (Barbara) at the same time as undergoing our first ever IVF cycle. Being only 7 months after the death of our daughter Maya it was a very loaded experience and induced trauma. I had frequent flashbacks, intense anxiety, and lost a lot of weight. My new job teaching kids with autism was very intense as I suddenly was landed with the high support class when another teacher quit. Whilst extremely challenging, it was the only experience that was demanding enough to make me stop thinking about myself and focus on something else for a moment. So each day I cried my way to school and then support some extremely distressed children who were regularly self harming or having intense and frequent "melt downs" and then return home and start my own grief and trauma again. I am grateful for a few friends who listened to me during this time and offered sympathetic murmurs.
The IVF cycle had the result of having three healthy embryos. One was transferred and two were frozen. The transfer did not take and I did not fall pregnant. I found out and managed to get a urinary tract infection and nits from the kids at school on the same day. Funny now (well the nits are) but not at the time.
Luckily it was school holidays after that and I spent time with my husband resting and grieving. We found the process of our first IVF cycle quit damaging to our relationship due to the high levels of stress we experienced so we spent the next few months talking and being gentle and trying to understand if there was a way forward - a way to do it again without hurting each other (unintentionally of course).
After a month or so it was the first anniversary of the death of our daughter Maya. We got together with a few friends and had a picnic. Her absence was felt keenly. My two closest friends and sister had had children in the meantime and seeing these three children together while Maya was gone was very difficult. Visiting the grave of your only child hurts.
I also caused a lot of pain to a friend who I had not acted well towards (not intentionally) but due to being so absorbed in my own grief. It was a friend who had been very supportive and also had an intense time (but very different in that she chose it). Still. I overlooked something and it made her angry. We recovered, but it shook me as I wondered how many other people felt this.
June brought on our second IVF attempt with the two frozen embryos. On the day of transplantation I drove to the clinic with my husband only to be called on the way to the clinic to be told that neither of the healthy embryos had survived the thaw. It was extremely uncommon as they have a survival rate of 9/10 at this clinic so to have 2 not survive was very bad luck.
Tell me something new.
We grieved again.
I experienced intense anger a the unfairness of our experience and took it out on life and myself.
My friend told me she was pregnant that week.
The next few months were spent regrouping, and strategising about how we would cope physically and emotionally with the next round of IVF which of course would be a fresh cycle. Which we did well. And found the next cycle to be quite bareable and maintained a strong hope throughout which helped us to be kind to each other as well as manage the stress of work and cycling. Well done us and though none of you saw this or knew it, we were a walking miracle for a while there.
My next door neighbour told me she was pregnant.
Once again on the day of transfer whilst driving to the clinic we got a phone call to say it had been cancelled. This time none of the embryos tested were healthy. They would die if they were transplanted.
This time I tried a few weeks of denial before going into grief and experienced a blessed and delicious numbness.
I spent may hours stressing about seeing my friend who was pregnant. The thought was unbareable and the actual experience not much better although survivable.
I was bridesmaid for a friends wedding. I could see she was really happy on the day which made me happy but I felt very removed from the experience and spent most of the day strategising about how I could get through without a melt down.
More people became pregnant.
I went to a first birthday of the aforementioned babies born after Maya. Bad idea. Did not cope at all and had to leave.
I didn't go to the next first birthday.
Thought for a few exciting days that I was pregnant but i wasn't.
Looked after by friends.
Jake and I are still working hard to find the way forward for us. But we are still doing it together. And that is a big blessing.
I am hoping that 2008 looks very different.
PLease forgive the general lack of me initiating contact over the last few years. I try to do it when I can.
I am sorry that I have totally dropped out of those organisations and commitees I used to participate in and contribute to. I am not up for it at this time. Sorry to my dear friend and sister who are pregnant. I won't be visiting you in hospital. I don't want to hold your beautiful babies cause I might not want to let go. Sorry I can't spend time with you. I still love you and miss you. Sorry to my husband for the many and lengthy times that I am emotionally inaccessable. I will try to be more available this year. Please be gentle and patient with me. Please believe in my love, and my intentions.
Ant to those who sent me a Christmas letter giving me details of your children's progress and favourite toys. I recycled it without reading it. Think of something else to say to me cause I can't make chatter about kids.
And to people who still have the illusion that you are in control of life. You drive me F**Kn crazy.
Merry Christmas and a Happy New Year.