Christmas

It's hard facing this time of year again.

for me, it's my birthday, Christmas and New Year in three weeks.

The marking of time scares me. It says each time that it's another year. Another year older. Another year without a child. Another year of grief, depression and sadness. Another year that I will start with "maybe this year......." as i have started the last 3.

One time , someone asked me if I felt any closer to becoming a parent while doing IVF. And the answer is no. With each failed cycle, each birthday, Christmas and New Year, I feel a little further away. There is more distance between me and my little girl. The memories blur slightly, I can't remember the name of her NICU Dr, the pain of missing her is less, which is a relief and a sadness.

The future?

I did another cycle, hot on the heels of the last one. It was all fine but I overstimmed and was unable to transfer due to high hormones. I was collecting a lot of water in my body cavity and not peeing enough compared to what i was drinking. I missed a few days of work (again). Felt bad - again. On the bright side, at the end of the PGD testing we froze four healthy embryos and I can have a drink and I didn't have to do the 2ww over Christmas

Which sets the New Year up for a run of frozen cycles, which I can stand. Damn it I can do a fresh one these days without raising a sweat. The physical holds no fear for me. But recovering again from the heart break of a failed cycle..... That terrifies me. I hate it so much. And of course it always co-incides with a pg or birth announcement. I try not to carry too much self pity in this regard but 4 nieces and 5 kids between my two best friends (for a start) in 3 years has hurt me more than I care to admit. Because no matter how I try and think about it, I can't seem to shake the feeling when I am with them, or, more accurately, when I come home, that I am standing in the darkness staring through a lighted window.

So. it's off on another holiday. I know I haven't been posting often but I do try to follow your stories and comment, so please forgive if I miss something over January. The holiday plan started as a trip to Bhutan and has ended as 3 weeks in Tasmania. The whole - what if I'm pg? thing - yeah right! But I'm not complaining about 3 weeks in Tassie. It'll be about food, camping and music. In that order. We have our priorities right.

If your Christmas can't be merry, may it at least be peaceful.

Much love

B

Thanks

For your caring support.

I was touched and uplifted by you dear people leaving thoughtful messages.

Of course - I'm both completely alone, and with a crowd of many in that experience. As we all are - as some of you pointed out.

I guess what makes a difference for me is having someone know. I've given up expecting people in my life to understand this experience. I have found that expectation to be unhelpful as it leads to an intense anger as they inevitably fail at doing that. It's not fair to expect people with living kids to imagine their babies dying in their arms. To imagine their family not existing...... Because they do exist, and to ask them to imagine otherwise is, at some level, a betrayal of what is. And yet, it is the experience many of us live each day, and, 3 years later, it can still knock the breath out of me. So, I have given up telling people (who I can see) what is happening for me, I've shared some of the practical details, but where I am at emotionally, what I'm feeling.......... by and large I keep it to myself (apart from my husband, and even sometimes from him).

It's kind of sad but kind of OK. I am learning to be my own support. To hold myself - so to speak - to check in on my inside people and have compassion on them. To give them protection, time and space.

Sometimes though, it's not enough. I just need someone to see.......

So thanks for baring witness.

Your capacity to show love to me, a stranger, is the kind of miracle that helps me believe in spite of everything.

humbly

B

inside

I feel so beaten

and alone

: (

Beta 10 yesterday and going down.

Little embie didn't keep growing.

?

Beta 45. (9 days post 6 day transfer)

Not looking good, have to have another test on Monday.

blah.

A visit with the Queen

I had a dream last night.

I took the school kids to a function so I had 3 kids with autism in the back of the car. One of the mums needed a lift home so she jumped in the front. A person approached me to let me know The Queen needed to get home and could I drive her, which of course I could, so I abandoned my charges and somehow found myself driving a London taxi cab with The Queen in it.

Of course I don't know how to drive in London or how to drive a London taxi cab and within seconds I had turned the wrong way up an enormous Boulevard, realised my mistake, jerked the car onto the foot path where it hit a Narnia style lamp post and started hissing. The Queen and I got out, she was very polite and told me she knew a back way on foot.

It was dark by now, and the Queen was showing me the way through an unlit dingy park beside a river. She was striding on foot and I was, dear reader, keeping pace on a pogo stick.We had a lovely conversation it went something like this

Queen (thoughtful, satisfied): Appearing at public ceremonies or other occasions is where I really come into my own.

Me (very intelligently, pogo-ing beside): You're very good at it. Everyone in Australia knows who you are. Should I tell her I voted for Australia to become a Republic?

Me: Are you able to walk through places like this on your own?

Queen (politely ignoring the very stupidity of the question): No

Stupid stupid me. Do you think she would be walking beside my pogo-ing if she had a choice?

We arrived at the back door of Buckingham Palace. The Queen nodded to a footman and said a polite goodbye. I could see a long low table with a lot of kids having a rowdy dinner party all wearing home made costumes and masks.

The butler came to thank me for my troubles and presented me with four pewter dishes with the ER insignia. The back door of Buckingham Palace was closed on me. I realised the butler had forgotten to order me a cab back to my car. I had to pogo my way back with four pewter dishes in hand.

So. Tell me dear internettes, what does it mean? Am I pregnant?

Just to let you know

We've been doing a cycle and we had a healthy embryo. Transfer was yesterday. I'm officially in the wait.

And the last post - it wasn't really to do with this cycle. It was to do with what I have been doing between the last cycle and this one. Making myself stand and face all possible outcomes without running or even turning away. Just looking straight at all the different paths that could lie ahead. Some of those options are unsettling.... to say the least.

It was something I think I had to do before this cycle. Self protection? Maybe?

Rage

PJ gave an excellent interview and has linked the podcast from the interview to her blog. Go over and check it out here. Thanks Pamela Jeanne for your continued insight and thoughtfulness, and for leaving some lights on a dark road.

She mentioned the word rage. It hasn't left me since I heard it.

Rage.

The pit itself is bad. Dire.

It leads a woman or man to desperation. Clawing. Begging.

But there is no way out.

But what I really can't stand is seeing you all. You stand on the edge of that pit from time to time, jigging your baby on your hip, poke your head over and see me in it.

It ruins your day. It confuses you. She is not the type of woman to be in a pit. She used to be like me.

Yet there I am and that feeling of discomfort, dis-ease lingers in you. It's hard to know what to do with that feeling. So you pray for me, that I will be blessed in my pit. That I will feel the comfort of His hand while I claw the walls of my pit.

Prayer said, you walk away and get back to the business of your life. Glad once more that the pit is out of view. And I am glad that you're gone. I can't stand you looking at me. I despise your sweetly whispered blessings. They are redundant down here and their intent - to make you feel more at ease about me being in a pit - makes me boil.

I realise how rare empathy is. That almost all are incapable of it.

I am no better than others at giving it. My rage is selfish. I stand for no-one but myself when I demand an audience with God and scream "No. Not me" to his deaf ears.

I rage at you too, but in silence. I pretend I don't. I'm so ashamed. I try to take it elsewhere where I hope it can't be seen but it is crippling non-the-less. Who'd have thought that the werewolf was in me?

* * * * * *

...... Because, once alone, it is impossible to believe that one could ever have been otherwise. Loneliness is an absolute discovery. When one looks from inside at a lighted window, or looks from above at a lake, one sees the image of oneself in a lighted room, the image of oneself among trees and sky - the deception is obvious, but flattering all he same. When one looks from darkness into light, however, one sees all the difference between here and there, this and that. Perhaps all unsheltered people are angry in their hearts, and would like to break the roof, spine, and ribs, and smash the windows and flood the floor and spindle the curtains and bloat the couch.

Marilynne Robinson

Housekeeping

edited to add - When I say "you" I am not talking about you, dear readers, or any one person necessarily.

Dust settles

My husband woke me up yesterday morning and told me to come outside. The sky was glowing the most eerie red colour I have ever seen. It wasn't light reflecting off a distant sky, the air in front of me was glowing red and I could not see the sun.

We came inside and as i put my head back on the pillow. Silence, then a lone siren heading up the street. You know we're in a zombie film i joked. I smell something. It smells like a swag. It's dust. It's tons and tons of dust.

And sure enough it was. Which was surprising because there had been a torrential downpour before I went to bed. When that happens you don't expect to wake up and find your world coated in thick red dust. The red earth from The Centre picked up and blown hundreds and hundreds of kms to your home.

Photos shamelessly pinched from the www.smh.com.au

* * * * * * * * * * * * *

I was quite happy doing the gardening. Poking my spinach to make it grow faster and munching on some sugar snaps. Quite satisfied, till I got a call from a close friend letting me know that she is pregnant - with twins - and all of a sudden my happy Pooh-ing about in the sun seems so empty and meaningless.

I'm OK. I'm just worn down with longing.

Hey there

I'm here. Aint been round much........

I been tryin to stuff things into this great big hole.

A beautiful new garden (you should see the bromiliads at home in the big old olive), a holiday (I broke my wrist skiing and now have to do everything with my left hand), concerts, fine meals...... all the luxuries Double Income No Kids can offer.

It aint working. It doesn't make a dent in the emptiness.

And I think that I am sliding in. After all the grieving there is a terrifying emptiness that scares me so much.

Why do we have kids? Why do we long so deeply for it?

Is it because we fear death?

Thank you

Thanks for your loving words of support.

Thanks for not walking away at my self pity and anger in the post before last.

Thanks for holding me through this time.

And also thanks to real life friends who sent cards, messages and left wine.

While you do this alone, it does not mean that there aren't people beside you, cheering you on.

Grateful to you.

Birthday

Your birthday little girl.

I so wish you were here. 

love your mum

A visit.

I went to her grave this morning. I was looking for something and it wasn't there.

Instead, another act to add to the comedy of errors that is the grave side visits. Long thin candles bent banana shaped because they were sitting on the dash as I drove to the cemetery. Candles that won't light, forgotten matches, attempts to light candles with the cigarette lighter in the car... the list goes on. This morning it was the tap, which I was fetching water from to wash the headstone, it came on hard and at a weird angle, resulting in a shoe full of water. I also dropped a lit match on the tissue paper that the flowers were wrapped in. god.

God!

Yeah. The usual answer. A big fucking blue sky. So ironic. Still so comforting. So............. patient.

I was surprised by how much I fell apart today. I thought I was going OK. I thought I had found a little happiness, enough to keep the raft afloat. I think bodies sometimes remember things even when our heads pretend we've got the situation under control. There is something about this season. It is so distinct and truly so God damn glorious in Sydney. Cold nights, Warm clear days. Everyone comments on its beauty.

Beauty. It's reassuringly indifferent to my anger. Where the fuck did that wave of anger come from? I thought I'd done that. The day continues to bestow warmth on me while I rant, wage war, share death around with a few others inside my head. It isn't fair honey. But is that screaming about it gonna make it any better?

So I go searching, looking for something else to be in my head. I try to break in to a memory. And as always, when you try and force your way in, it disappears from you. Instead, I'm wiping a cold granite slab free of flung lawn clippings and bird shit. I hate it. It's a job usually done in tenderness, the only thing I can do as a mother, but today I hate it. I don't want to be here. I don't want it. I don't.

The sweet peas, so delicate and soft look stupid against the dark granite. The words on the stone, chosen with so much care, seem so hollow. Hollow. Look! It is hollow. The ground has resettled, collapsed under the concrete slab the headstone sits on making a cave with a small opening. I put my hand down there, up to the elbow. I'm reaching into her grave. Why the fuck did I just do that? And it leads to detached biological curiosity about the state of decomposition, 3 years on. Why did I agree to an autopsy? Why did they make me line your beautiful coffin with plastic before I covered it with that soft green embroidered fabric? We should have had her cremated. I would of if I could have made a big fucking fire and put the coffin on top. But the electric curtain with its conveyor belt spooks me. It had to be a burial. A hole is true. Dirt is real.

I look at the sky. The shimmer of gum leaves in bright light. If she is anywhere, it's here. The ground only has her body, but not her. That is why I can't find what I seek when I am there. I am looking in the wrong spot.

But the truth is, I never will find what I am looking for. It is gone. She is gone.

I make my way home in tears and frustration.

Maya

The facts. A warning to pregnant ladies - detailed info of things not going right in a pg. If you are anxious (and aren't we all) you may not want to read it.

I had no trouble falling pregnant with Maya,way back in Sept 05. My body did what it was supposed to do. I stopped using contraceptives and a month later I saw two pink lines, cried, hugged and got terrified. Looking back, I realise I was terrified of all the wrong things.

At the 19 week scan, the Doctors detected a heart problem. They were unable to diagnose it, they had never seen it before, didn't know if it was a problem, or how much of a problem it would be, or if an operation would be needed at birth. I left the ultrasound feeling a little shaken and was booked in to see a pedriatic cardioligist the next week. I went armed. My friend came along with a notebook and pencil (which freaked the Dr a bit - he must have thought we were the suing type), I was going to get information and lots of it. That is, I was going to be in control of this. We had the same response from the Doctor who said he had never seen this before, and said he'd take a look in 6 weeks. In the meantime I continued my visits to the local Doctor for the other regular pregnancy checkups. About 4 weeks later she sent me back to the hospital. My fundal length was too small, I was bumped up and up until I was seen by the head of obs at one of the big three hospitals in Sydney. He looked at baby (as she was known then) for a long time. Flows looked good, placenta seemed to look good, but she was way too small, down in the bottom 2 % and I don't suppose they tell you if you are less than that.

I got booked in for 2 week appts. Each time the amniotic fluid heart rate and flows were checked. They all seemed to be working and the Dr said we would just keep monitoring. I asked if it was connected to the heart issue (as I was still seeing the cardioligist as well) and he didn't seem to think so. As my friend said, "It's like having a headache and then stubbing your toe".

I continued seeing both Doctors, Maya wasn't getting much bigger. The head of obs seemed to think it was probably a placental thing. The cardioligist continued to scratch his head and shrug his shoulders, maybe we'll know next time...... next time ....... when she's born. It seemed that all the lights would be turned on, all the answers given, when she was born. At the US I had when I was 34 weeks, even I could tell she wasn't OK. Where I was used to seeing dark pools, there were just thin lines. The amniotic fluid was real low. Everyone agreed. It was time for her to come out. I was given steroid shots on the spot (to boost her lung strength) and booked in for a c-section 2 days later as they did not think she would be well enough for a natural birth.

The surreal feeling of waiting to give birth. It's scary for any first time mum, and scarier when you know something is wrong. No - one though, had any idea, any idea at all, at just how wrong things were. I found the c-section really truamatic. I was not ready to have my baby taken out of me. I wept the whole way through, my husband holding my hand and the anesthesiologist giving me sympathetic smiles. When she was delivered, I heard a tiny cry. Is she alright? My voice cracked, too soft for the busy technicians to hear. The ob said over the sheet "Did you have an amnio?" No. No. I didn't want one. Maya was wrapped. I got to kiss her briefly. I don't know if my lips actually touched her little head. She was breathing, whisked off to high dependency with Jacob trailing and me off to recovery.

I was out of it, overjoyed, and hated it. It was surreal. Eventually Jacob returned and I made him get an orderly so they could push me to High Dependency Unit. I had absolutely no idea where I was in the hospital. I just watched the lights flah above me spinning and then righting as I turned corner after corner. When I got down there, the pediatrician told me to wait. They were trying to get a drip in and didn't want me to watch, I waited so long. I waited. She came back and told me they had had no luck . I would have to wait some more. I waited again. Waited. Finally, finally I was allowed through. I was wheeled through a room of screaming babies in cribs. Which one is mine? Which one is mine. They brought me to her side and finally, finally I got to say hello. I put my hand through the crib, I touched her beautiful head, It fit so snugly into the palm of my hand, just right in the centre. I saw her move her feet, and grasp her tiny fingers around me. She was having oxygen support. Bubbles were coming out of her mouth - a result of the fluid not being squeezed out through birth. She was tiny and so sweet, dark hair, a cute little nose, and honey coloured - our little mixed race baby. We had made so many jokes about how cool we would be. Her little hand went half way around my finger. She was small, and so thin. Her little limbs were so thin. I'm sorry baby. I'm so sorry. I have memories of my mother being there. Why was she there the first time I met my baby?

They gave me a room to myself, thank God, if I had to be put in a ward full of mothers with new babies they at least had the decency to give me a room to myself. In the middle of that night they woke us up to ask us to come down. Our little girl wasn't doing well. She'd been moved into the NICU and they were having trouble getting her to breath, they were pumping oxygen in. They asked if wanted to baptise her, we called my friend, myparents(who were near by) and Jakes mum (who wasn't), she arrived an hour later (4am) in a state of panic and complete disorientation. The image of her, 5 ft nothing, alone, charging through the NICU, forgetting to wash her hands, going to the wrong crib. It makes me cry. She was so ...... confused. Confused and alone. She needed her husband and he was dead.

We said a prayer, a blessing over Maya together. Trusting her to God. I still had no idea how serious this was, despite the drama. No mother believes their child will die. And they had managed to get a tube to her lungs to pump oxygen in. We went back upstairs to the maternity ward. To the crying babies and their mums and our strangely silent single room. A rough sleep, and I woke with that terrible heavy feeling from the operation lifted slightly. I was anxious to get back down. A nurse came an unhooked me from the drip with pain relief at the press of a button. She got me into the shower. It was so good to be in the warm shower. I wanted to stay in there forever. In my head I was saying "I'm sorry baby I'm coming" and then I would sit just a bit longer. Jake's friend arrived an wheeled me down. I bumped into the ob who'd been seeing me as I went in. He looked at Glenn pushing the chair and then at me, slightly confused (Glenn's white too). Glenn said "not the husband" and he smirked and rambled a bunch of shit at me, of which I head not a single word. Get out of my way. Get the fuck out of my way.

There she was. I leraned the routine of hand washing and sanitising rub. I can still smell it, it belongs with the eerie beeps of hospital machines. She was so sweet. She was moving her arms and legs a bit and looked - to me - a lot better. When I touched her head she responded and I was surprised. Surprised that she knew me. Of course she did. She'd listened to me talk jack and cry, sing, shout and laugh for 9 months. The doctors told me that she did a poo as she came out. Articulate! we agreed. Yeah there are some shit times baby. But there are some really really good ones and this one is the best of all.

The next five days are a time outside of time. A blur of breat pumps, midnight calls, friends and family looking at me with confusion and sadness, laughs. I have to give it to our friends. Between them, they made sure we never ate a hospital meal, not even breakfast. I know that I managed to walk down the stairs (from level 5 to level 3 - couldn't find the lift) less than 24 hours after my c-section. For those of you who've had one, you would know that only a mother seperated from her child would be able to do that. I also know that I took only 2 panadol from when they took the drip out, to the day after Maya's funeral, and I only took those cause the nurse made me. The pain, all of it - physical, emotional, spiritual - would come later. Those days are a blur, so distinct and yet somehow so unclear. Some piercing memories, especially the days - these clear blue autumn days. One of the best times in Sydney. I longed to take Maya out into the sun and on the grass. It got stormier during the week, in every way.

There was never any good news. Processions of confused specialists (now also looking at every organ in her body, not just the heart) x-rays, ultrasounds, drugs, oxygen. She was on a machine that made her breath 600 time a minute. Blood tests every 3 hours. Poor Maya, beautiful Maya. I wonder sometimes. If I knew she was going to die I would have held her the whole time and not let them touch her with all that. I would have just held her in my arms, and in Jacobs arms. In both our arms at the same time. And lived that precious precious time the best way. So close. No-one inteferring. But of course we didn't know. We were so sure she would live.

I guess we should of known - at least the day they told us her kidneys were no longer functioning. Those of our friends with any sort of medical knowledge knew the chances were pretty slim at that point. She was packing her bags for the next world.

Five beautiful precious days was the time she was given. And what a life. Another call to come down, this one for real. I raced down, my mother standing between me and the crib saying "I need to kiss you" (still so angry at that). They put up a screen, pulled out a couch for us to sit on together, switched off all the monitors. No beeps, no charts, no lines going up and down, She still had all the lines and tubes in of course. Quite a collection by that point and the machine beating her lungs 600 times a minute. I don't know how long it was, a few minutes at the most. We held her, kissed her, told her how deeply we loved her, we loved her so much. We loved her so so much. We love her so much.

I could tell the moment she died, despite 600 breaths going in, the breaths out were slow, I could tell from a small spit bubble coming out of her dry mouth. Poor girl. Poor tiny girl. What a hard life, but so much love in it. It hurts so much to remember. So loved. So hard. I wonder if she was aware of me, if she knew it was me at that time. We held her, we loved her. And she died right there. In our arms. In both our arms.

Can laugh in retrospect.

There I was, naught but a surgery gown, feet in the stirrups.
The Doctor had just shown me a little bubble in my uterus on the ultrasound and told me it was my little embryo. He was removing his gloves and we were smiling anxious smiles and muttering "thank yous" "goodbyes" and comments about not wanting to see each other again. He flicked the switch to lower the lie-back chair, but the chair malunctioned and started tipping instead of lowering.

I was sliding spread eagled an uncovered into the lap of my (gay- for some reason it makes it funnier) Doc. He jumped up and back going "Whooooaa" (yeah - real chilvarous) and I desperatly tried to unhoik my legs from the holders so I could land on my feet (which I managed - yeah Barb). The Doctor/Patient relationship restored its balance and I said "See, even the chair doesn't want to see me anymore."

Tell me you funnies from the Stirrups.

Bloggy return

Been away.

Me like holidays. Wanna share?

View from house we were staying in.

Web in rainforest with water drops

On board with dog.

(and overboard in the nikinoo)

Ahhh. Ocean pools. Places of magic and delight.

So the Universe doesn't hate me after all - see these critters waving at me!

If the camera was timely you would be looking at a seal above the water. Here's the splash.

Is that happiness I see on her face?

And. I saw dolphins twice in one day. 

The Korean Bathhouse.

Grief is like a virus. It controls you. You can't choose whether or not you catch a virus, how long it will knock you out, in what way it will knock you about, and whether or not there will be any long term damage.

The stress of this last failed cycle has been building. While I haven't been ignoring it entirely, I've been treating it with caldral - to continue the flu metaphor - patching up the symptoms and soldiering on. I talked with my psychologist last week about the number of things I've been forgetting, the things I've let slip, "Trauma. You've been through so much. So much death. So much trauma. It will do that to you." and it peaked Friday night when we got home at 1am to find that i had left the house 12 hours ago with the front door wide open.

Yesterday, yesterday it caught me. Catatonic is the only word I can find to describe that state of grief. Not awake, not asleep, but lying immobolised, staring, staring, staring. Any thoughts that were occuring were happening too deep for my conscious to catch on to. Submerged... buried.... unreachable.... unknowable ........ unbearable. Unbearable. Unbearable. 

I had felt it coming but hadn't flagged it with my husband. I saw the panic in his eyes as he watched me disappear, again. Shouting and anger weren't enough to rouse me, to bring me back. Without a word I pulled the sheets over my head and stared at the underside of the sheet.

I have felt this before. The day after Maya's funeral. I lay like this in bed for 17 hours. Reliving. Inhabiting the memory, dreaming her life. The Dreaming. But real, but not at that moment. The past in the present.

I knew that this was something I had to get through on my own. I dragged myself out of bed and for some reason, I knew I had to go to the bathhouse. I don't know why I knew, I've never been before but I rang and booked myself a scrub and massage. Yes, hard please. My back, directly behind my heart.  

The coldness has been spreading. Starting as a small, smooth, round, cold stone behind my heart. Over the weeks it has spread, petrifying my shoulder, my spine, across to the other side of my back. 

Nakedness is compulsory in the bathhouse, but I was already stripped bare. I lay in the hot pool and let the water hold me, thank god for the water, for I was lost to myself. More staring. Hours of it. At some point I got into the ginseng pool and then the cold pool. The cold water bringing me back to myself. I held my breath underwater and put my face to the current. Like a cool stream, mountain water. I stayed there, surfacing sometimes for air, seeing how long I could hold my breath there. I felt the water move around my body, over my skin. Undisturbed by this large being in it's path, moving gently around me instead with a little song.

The therapist used her elbows in the middle of my back. Too hard, too hard? No. ....... No. I could barely feel it, I was so numb. Even after hours of soaking, I still felt numb to the core. But gradually, something started to shift. Break down. I washed the oil off my body, dressed and lay in the sleep room. I thought of Maya. I held my hand over my heart remembering how she felt when I lay her there. The size of her head, and length of her. I felt her. Eventually I got dressed and went onto the street to find a meal and a coffee.

When I got home, the tears were starting to come. I did not want my husband to see me. I know that he can find my grief too much to bare. But he sat with me, held my hand through the sobs, through the silent sobs, a pain so great, and from so deep within, that my wailing could not find a voice. Silent, wracking, sobs.

I think this might be the tipping point. The beginning of the end.

What's in a name

For the purposes of this post, substitute * for a. I am trying to be smarter then google and make sure people thinking "Whatever happened to B*rb*r*" don't find me via here. I mean, it wouldn't be quite the way I'd choose to reconnect with say, that girl I used to scoop icecream with when I was at uni (not for fun - it was a job).

So

My name is B*rb*r* N*nce.

I didn't change it when I got married. We had great intentions of hyphening but never seemed to get around to it. Maya had both of our names though.

I've never really liked B*rb*r* as a name for me. I can't seem to work it right. I've tried exploiting the barbie doll aspect - having long blonde hair and all - but let's face it, I'm way too practical, don't look good in pink, and I'm A cup. I kind of tried to work with the retro aspect of  the name, taking on some type of 50's rockerbilly feel, but that's not really me either. I thought Babs had a gangster moll feel until everyone started making Yentl jokes. 

I much prefer my middle name. Ellen. Loyal, true, strong, a touch of sweet. It suits me to a T. Only no-one has ever called me that and the few lame attempts to get it going as a working name fell on their bottoms. So B*rb*r* it is. It's one of those things I've learnt to live with.

Both my name and personality lend themselves to nicknames and I've had many over the years. Here's a few of the ones that stuck (depending on who I'm hanging out with)

Barb, Barbs, Bubs, Barbie, Babs, Barbara Nellie, Barbara Cow (my parents had a pet cow called Barbara before I was born! Yes, she got et.)Bra 'n' pants, Bra, Pants, Barbalicious, Blah-Blah, Blah, and weirdly, Bubbling Parabola.

I have also spent my working career with people with disability. I can officially let you know that 98% of my friends with Down Syndrome (and I know 100's of people with DS) can't say my name. They either say Bahbah, or Brahbrah. So I'm pretty good at answering to that too.

And this is all a long and tiring introduction to a new song about me. Enjoy.

Leave a comment and tell me about your nicknames.

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A long time ago, a life time ago, I wrote a post on a forum about letting go. It was about 6 months after Maya died. I found it today

I am wondering if some of you would be happy to share how you came/are coming to a point of "letting go" of your precious son or daughter. Not of forgetting them or stopping loving them, but of saying goodbye in your heart, and of making a choice to live in the present. A choice to face the present and the future, which means, effectively, turning away from the past. A choice for life over death, a choice for what is, over what has been.I can feel this point approaching and it seems unbelievably unfair that this choice is before me. It is almost as hard as facing little Maya's death. I have been immobolised by rage at the thought of having to make this choice.... but I feel that it is something I have to do. Engage with now. Take stock of this painful, muddled exsistence, of my empty arms, of relationship complexities, of uncertainty about the future and (at the moment) my stupid job - and own it. Recognise that this is it. This is life, at least, this is my life (not what i imagined or planned I assure you!). It's the real thing, not something I have to sit through while I wait for the real thing to begin. These are the things that I need to begin to face, and I can't do it while all of my heart and mind and strength is with my precious girl. I have to gently say goodbye. And it splits me in two to do it.Where do you find the kind of courage that is needed for this? How have you "marked" this decision (ie, what did you do/say/write/draw/what ritual did you engage in/ was it witnessed by the people you love)?

The reason I have been thinking about this post is that I feel another such battle on its way. This time, it is about my future, not my past. It's a battle over hope, or at least a particular kind of hope, or hope in a particular kind of outcome.

I'm in the ring with God. I obviously won't win but I plan on giving it a red hot go. I demand to know why he is making me give over not only my past, but my future to Him. I want to know how He can be so cruel. Why He demands so much. And why He demands it from me. And why others don't have to give anything up, not even their illusions. Fundamentally, I do not want to give over, accept, let go, trust my future to Him because well fankly, He has proved himself to be untrustworthy. He does not hold my heart gently, but rather beats it again and again and again. He offers no protection, no sanctuary. He does not honour my love, for Maya and for all those little potential lives we have created together. He does not see it as worthy. He takes everything. He takes them all, those precious lives, big and tiny, and gives nothing in return. except inescapable beauty.

And like Jacob, I will not stop fighting until He blesses me. I will not hand over my tiny precious hope. I will not just give it up. Give me something God, something.




I did eventually give Maya into God's keeping. We had a little ceremony at her grave in which Jake and I said those words "We give her to Your keeping" . I did it, and wondered if possibly I was the worst parent in the world for doing so, but I knew that there was nothing else I could do for her while she was in the next world and I was in this one, so I gave her to God. I felt free after that. Strong and free, even though deciding to do it hurt so much. I still question that action sometimes, I wonder what it says about me as a parent. But I did it in love. I did it in love.


I wonder too, what sort of parent I am when I trust my daughter to Him and yet, do not, can not, will not trust Him with my own life.

My baby and embryos

I only seem to make ones that die.

In my arms, in my womb, in the freeze, in the petri dish.

All of them die.

And I just don't know if I can keep on with this for much longer.

You know you're getting near the end when stop taking HPT because you know that knowing the worst will be much worse than not knowing. And I was right, knowing the worst is worse than not knowing.

Doc wants to do more test - this time on Jake. But I am really not sure if I have it in me.

Waiting

I f#@kin don't like this.

My first embie didn't survive.

My second embie had 100% cell rehydration (for those in the know about frozen embryos). If you are not in the know, well, it's good.

They put it back.

I have chest pains from panic. But I am not too worried, I googled and after reassuring myself that I was not about to die of either a broken heart or heart attack, I resigned myself to the fact that anxiety is going to be a part of this ride.

The momentum for life, both scientifically and spiritually, has to come from this little embie. I can provide the best environment possible, but as with all things to do with your kids, they ultimately need to do it for themselves.

Go embie. Have a will for life.

Game on

Yep. The next FET
Transfer Thursday.

Heartstrings.

While at my friends wedding recently, I was sitting on our big tongan picnic mat -at least 5 metres of woven coconut palm -under the spreading Morton Bay fig, and a little girl around 2 years old wandered up to me and plonked herself in my cross legged lap. I had spied her earlier. How could I not? Her dad was Sri Lankan and her mother a whitey like me...... Dark curls and big dark eyes........ and I thought "Can I borrow you for a little while? I just need to know what it is like to hold someone like you."

In truth I am sure that neither she nor her parents would particurlarly appreciate a stranger holding and kissing and crying over her.

But for that little moment, it felt, so ........ right.

A question of etiquette.

So. There I was. Coffee date with a friend. We were sitting at the bar at the window looking out onto the street in the last inner city suburb in Sydney that hasn't been completely overun by yuppies. The next place to be.

I'm staring out the window, tears dripping into my latte (decaf of course) as I tell my friend what's been going down. I spy my RE out the window, with his little posse of gay friends. I put my head down and tell my friend that that man out the window has spent many hours staring into my chimichanga*. I drop my head so my hair covers my face........ He walks past me in the window..... and then into the same cafe with his friends.

What does one do in such a circumstance?

Mrs. Spit. I needed you.



* I really have no idea why my friend and I now call it a chimichanga

Epilogue

I ended up sending a copy of the post below to my family. They kind of have a vague idea that I connect with other loss mums over the internet but they don't ask that much about it.

I guess I sent it to them because, in a way, the last line - wishing they could see my invisible child - was directed towards them. Them, and my friends, and the people I interact with on a regular basis.

I got a very strong response from them. Mum and Dad rang the second they recieved it in tears. It was a little overwhelming as I was not trying to elecit that kind of response. They took my writing very literally, which my family is want to do, and focussed very much on the list of losses rather than the metaphor of carrying absence which was the most important part to me. I think they thought I was in a really bad space when I wrote it when in actual fact I was in quite a strong but reflective space, and was trying to express the feeling of the journey. I'm wondering if it was manipulative? It wasn't meant to be.

One good thing that came out of it is an email dialogue with my mother. Email you mother? you say. But yes, sadly we are not very good at face to face dialogue. I retreat and mum responds to my retreat by monologuing at me, and then I retreat some more. It is a pattern that has always hung around, but has spiralled way out of control during these last three years and try as I might, I've been unable to break it. Mum recognises it too and feels helpless in it. I guess were just not that great at discussing how we communicate - or not that willing - or something.

Thanks for the supportive comments. They mean a lot and are part of the strength I have been building and carrying this last week. That, and the lightness that comes from saying what you feel to the people around you.

I've also had the opportunity to connect and re-connect with some of my friends in real life (mums), and it has dissolved some of my anger. It has been humbling.

So. I'm back to knowing that "I'm going to be OK".

A bundle of Absence

Sometimes, when on this horrid road, it is the loneliness that weighs on you. I am eternally grateful for the space created on the net to meet others and overcome this, but, at some point, each of us turns off our computer and takes our heavy heart out into the world.

I don't know anyone in real life, experiencing what I am experiencing. I know a few people who have had a stillborn child. I know a few people who have gone through IVF to build a family. I don't know anyone else (IRL) who has had a child live for a while and then die, or who subsequently has been unable to become pregnant. This is the world I take my battered heart in to day after day, in search of understanding, sympathy and healing.

The difficult thing is that I don't have anything to show for all my work, heartache, courage and pain. It is a burden that is carried silently. Unseen. The presence of a child (whilst not taking away from the individuality of the child and the importance of their experience) tells something, something of the experience of the parent. You know they have a birth story, wakeful nights, love, fear..... It offers an entry point for community. A point of connection, a place where experiences can be compared and contrasted, looked at from different points of view. 

The experience of absence of children is as significant as the experience of parenting, particularly following the death of a child. It is the lack of a presence that is part of what makes this experience so isolating. There is nothing that signifies my loss - and ongoing losses. Nothing to tell the world something of our experience. Our love, courage and heart ache. Nothing that shows years of thought, longing, hope and disappointment. Nothing that offers that point of connection, an entry place, through which people around me can understand a little of our experience. And so, it is largely unseen. Carried quietly, and invisibly with me into the chaos of community life - as many wounds are. I recognise that there are plenty of people with other sorts of internal wounds that I cannot see as I travel in this world. I also recognise that physical representations of trauma (such as burns victims, quadraplegia etc) bring a different set of isolation as many turn away at the sight of you. The pain is too much for some to even look at, and your body betrays your story before you even have a chance to smile at someone.

I wonder though, what would it be like for a parent to have a child that was invisible to everyone else? To live in a world where no-one else had children, and the parents tried to tell the stories of their invisible child to the people in this world. You can see the disjunct. You can see how much people would not understand their experience. You can imagine an invisible child mum meeting someone else who had an invisible child and them huddling in the corner for hours, swapping stories of progress and pain. You can imagine an increasing frustration with a world that while somewhat sympathetic, did not really understand the cause of their extreme tiredness and occasional dysfunction. Frustration at people who could not celebrate their small victories of parenting.

That's how it is for me, carrying Absence, so heavy and obvious to me, but invisible to the world. I am grateful for the few that try to listen and understand, but, ultimately, only my husband and I  can see our "invisible child". I am not talking about Maya, although the loss of her is part of it. It is also all the other losses, the times of opening myself to possibility and stinging from the smart of those possibilities crushed, the friendships that have dissolved, the loss of connection, loss of community, the losing and re-finding and re-losing of faith, the pressure on the relationships I hold most dear....  These are the things that make up my bundle of Absence, so burdensome and so precious, that goes with me into the world.

I wish you could see my invisible child.

For those that asked

This is the cookbook that I got most of the recipes from for the fantastic FAG dinner. (see two posts below)

It is a restaurant I went to while on holiday a few years ago and we also went to the cooking school for a day. The restaurant is in a beautiful tropical garden. They grow a lot of their own produce. It's really a lovely experience if you are ever in the area.

Can you begin to imagine it?

Have you seen the horrendous news about the bushfires?

And an interesting reflection on trauma survivors here - it may resonate with some loss mammas.

Please keep these people in your hearts and prayers (if so inclined). It seems hard to maintain faith in such bizarre and terrifying circumstances.

Blowing my trumpet.

Well everybody. I say pat me on the back. 

Thank you, yes thank you. I agree. I think I'm awesome too.

(afterall, it's my blog and I can brag if I want to)

Now let me tell you why.

Important things first. My sister's baby is OK but small. They had to help it along in a rather sudden way with the suction cap as it was getting distressed during the birth. My sister is OK now but had the thing where the placenta only half comes away and you loose blood at a very very rapid rate. I think she lost 3 lt which is rather alarming but thanks to some transfusions  and emergency surgery to remove the placenta she was OK. Her poor husband sat there with a little baby in his hands watching her get whisked away. she was fine when I saw her.

Yesterday... I went to a counseling session which was good but tiring. Then I cam home and did stuff. And then I went to see my sister in hospital with her new baby girl. That in itself is quite an achievement but the things is, she was in THE SAME hospital that I gave birth to Maya in. So I just walked right on in (little panic attack) to the maternity ward (bigger panic attack) past the fancy double room they gave us to be with Maya in after she had died..... and stopped a few doors up. I could see my sisters shoes below the curtain, and her husbands, and someone elses. Bugger. What is it with visitors to maternity wards who think it is fine to just drop in unannounced? HELLO PEOPLE. THIS WOMAN GAVE BIRTH YESTERDAY. IT WAS VERY TRAUMATIC. SHE LOST ALOT OF BLOOD. You don't just wander in when you're not even in the top 20! So, I found a chair in the corridor to wait for her to leave. I waited 20 min. Apparantly unannounced visitors are also stayers and treat the place like a public lounge room. After 20 min I went in anyway and she made no sign of leaving. Eventually bro in law asked her to go so we could spend some time together. I held their little girl. I wept and wept. (She stopped crying when I started). I kept thinking about the story my brother in law's father told at the wedding. He spoke of the day they adopted Matt. A cold winter day, they'd flown into Sydney and had gotten a call to go and collect the child. They caught the train out to Penrith and just picked up this baby - no sling or pram - and carried this baby back. On the way home the trains had broken down so they had to walk for an hour in the cold with this baby in their arms, back to the hotel they were staying in. It was a beautiful image.

I couldn't let myself hold their girl close to me. I knew if I did, I would just want to walk out. Walk out of that hospital with a baby girl in my arms.... walk out and just keep on walking. The way it should have been. So instead, I just held her out in front of me, and cried and cried, and then gave her back. Next guest unannounced guest arrived and I took my leave. (So - that's the first pat on the back). 

Being a clever girl, I knew I would probably be pretty wobbly at this point and had planned ahead. Yes, very unlike me, but I had. My reward/remedy to myself for such bravery was to go to the beach. The rest of Sydney, experiencing the same heat wave as me (meant to top 44 today which is 112) was also there. So, excellent waves again but I could feel a lot of arms/legs and heads as we got tossed in the same wash. Still it was very fun and very cooling and no wardrobe malfunction this time. (Pat on back 2 for being very strategic).

And now........ for the stuff I did in between the counseling session and the hospital visit and the beach. Some people sing, some play, some knit, me...... my true spiritual gift is cooking. There is nothing I enjoy more than spending hours and hours on a ridiculously fiddly little dish and then watching it get eaten in 2 min of enjoyment. I love that all that thinking and work just vanishes into a moment of pleasure. I guess it's like a recital, or a play. Vanished and nothing but a big pile of dishes to show for it. 

Let me tell you about last nights dinner. This was my response to Mrs Spits Challenge to host a dinner party. The guests was a group of 6 friends collectively known as FAG (Food Appreciation Guild). Frankly, in search of "authentic" cuisine we have ended up at possibly some of the worst restaurants in sydney. Eat with courage and gusto - that's our motto. 

Knowing I would need some cooking therapy to get me through this week I decided on a five course meal that was ridiculously fancy. I have to say, I'm really getting quite good. Take a look at this.

Course 1.   Stuffed Lemongrass.

Course 2. Tom Yum Goong - Hot and Sour Prawn Soup

Course 3. Som Tam (green papaya) salad and sticky rice with sweet pork

Course 4. Red Curry of Duck and Lychees with Jasmin rice

Course 5. Cut dragon fruit - which I don't have a picture of because it was well past midnight and we were all quite merry. But here is one i stole from the net.

In between all this is lovely photos of the six FAGsters sipping wine bought on our cellar door weekend, laughing and making rude jokes a bit too loudly (we were sitting outside and the neighbours are quite close in this suburb). I was so unstressed it was ridiculous - it seemed magical, even to me, that these amazing dishes kept appearing without any fuss or bother, There they were out on the table being enjoyed. And i had done everything from scratch - the stock, the curry pastes - all of it with the assistance of a very good cook book and my local asian grocery stores.

The only down side of hosting a meal like this is that it pretty much garuntees that no-one will ever ask you to dinner again. Which means you have to become good at saying "You should ask me for dinner" in which case they have to. That is my third pat on the back for the day, and frankly, I think the day deserves a standing ovation for me being great. Thank you thank you. I'll go eat some humble pie now.

Torn. Sad. Happy.

This baby arrived last week and this one is being born as we speak. Well, I assume so, my sister was being induced this morning. I hope it will be OK. I think it will be.

****

I'm fighting depression. I understand that I have to fight it so it doesn't push me down further. I hate that it is hard work and so very tiring. Being  a fighter is not really my style. I'm better at mosey-ing and day dreaming. Unfortunately that can't work for me at the moment cause I only daydream about unhelpful and depressing things. So I'm on brain patrol again. And when I'm winning that, Depression - the bugger - justs by-passes my brain and goes for my body. Not great sleep, wierd tummy - you probably know the drill. It's managable, but tedious, BORING, and I don't want it.

****

But there are things that help. One of the things that helped this weekend was the wedding of my beautiful friend Ali. She's a phd student/disability activist/community building/rock chick friend who knows how to love. In fact, she's one of the few people in this world who seems to need to love more than she needs to be loved. She falls in love often and with a very wide range of people - which is not to say that she is not loyal, she recognises a crush for what it is and doesn't pay it too much attention  - she is just really into people.  The wedding was at a beach 5 hours drive from Sydney and was a mini music festival. There were at least 3 double bases and someone had dragged (how?) a piano into the middle of the paddock the wedding was on. She sang with her band, he played with his (YES they are both muso's). And there was a lot of love. A LOT OF LOVE. and it made me feel great.

So here are some photos from the wedding. Jumbled, sideways and completely out of order because me and html are not yet friends. 

Girl with my lovely hula hoop.

bride, groom and minister

a lovely moment with a dad and his 4 yr old playing blues harmonica

more music

Nod in the direction of.........

Australian Federal Government who extend Medicare benefits to IVF processes. I recieved my reimbursement cheque which means I am down a total of $500 at the end of a frozen cycle (Instead of $3000). I am very grateful that finances is not a barrier for treatments here.

My cousin.... who is a joy to hang out with. In many ways like a sister. We beached it together last night as the sun was going down. The wind hot, the water cool, the light soft and coloured, the waves breaking even and strong. We body surfed together and because our bodies are pretty much replicas of each other we would swim onto the wave and then surface at the same spot at the end of our ride - grinning, cahooting and pulling togs back over our bits. (I did a serious nipple flash while jumping around going "Yes" after catching a particularly good ride - no wonder the other swimmers were grinning. I thought they were sharing my joy!)

Yourself... why not. You 're great.

My sister

Is having a baby in a few weeks.

She has had increased Ob appts due to the size if the baby being very small and continuing to drop in its percentile band. Last week (at 37 wks) she dropped to below 5%.

It is disturbingly similar to Maya. Although she was smaller than my sisters bub. It is wierd though. When Maya was diagnosed with the unbalanced translocation both Jacob and I were tested and it was determined that I carried the translocation. Then my other sister (who was pregnant at the time) and my parents were tested to see if they also carried the translocation and it came back clear. Which means that it was a problem that started in me - when I was one cell - even though I can pass it on to any kids I may have. Which means it would be very very unlikely to have a sister with the same problem. The odds would be similar to having two siblings (aside from identical twins) with Down Syndrome.

The thing that is worrying for me is that she is not small, neither is her partner. Also, all the flows look good in the placenta and chord etc. I know this should be a good thing but it tends to point to the problem being with the bubs rather than with her or with the chord/placenta. It all feels eerily familiar to me and I am quite concerned.

I guess this is where a "she'll be right" attitude works wonders. I am sitting nervously by trying not to assume the worst while she seems to be travelling pretty fine.

Please keep her and her baby in your thoughts/prayers.

Apparantly not

The home pregnancy test only had one line. Blood test tomorrow.

Yes - I even hid the frozen cycle from you dear friends because...... well...... I don't know why.

But I was so very very happy for the first three days, before worry arrived. A quality of happy that I almost didn't recognise. So deeply peaceful and - happy!

Sigh.