Saturday 21st August: Writing elsewhere

The last 3 weeks have been really tough for me. Since we hit that 6 month mark I have run out of steam emotionally. I find myself wanting to write but also needing to be in conversation with others.

I am into 2 other blogs where I can be in conversation with other Mums who have lost a child. For the moment this is where it feels best for me to put my energy. Maybe in a week or 2 this will change, but at the moment I need to feel connected to others by my writing rather than just expressing myself and sending it out into the ether.

So I think I will get back to this blog in a while, but for now I will probably be writing elsewhere. Let me know via email if you'd like me to notify you when I start writing on this blog again.

Here's a funny. Just scroll down a bit and start up the clips of Kathleen Madigan doing stand-up. I really like her stuff:
http://www.kathleenmadigan.com/

Monday 16th August: Not funny

I am on the readings roster at my church. I only do the readings once every 4 months, and it was my turn yesterday. When I got on the net on Saturday night to check what the readings were, I found this:

Reading 1 Rv 11:19a; 12:1-6a, 10ab

God’s temple in heaven was opened,
and the ark of his covenant could be seen in the temple.

A great sign appeared in the sky, a woman clothed with the sun,
with the moon under her feet,
and on her head a crown of twelve stars.
She was with child
and wailed aloud in pain as she labored to give birth.
Then another sign appeared in the sky;
it was a huge red dragon, with seven heads and ten horns,
and on its heads were seven diadems.
Its tail swept away a third of the stars in the sky
and hurled them down to the earth.
Then the dragon stood before the woman about to give birth,
to devour her child when she gave birth.
She gave birth to a son, a male child,
destined to rule all the nations with an iron rod.
Her child was caught up to God and his throne.
The woman herself fled into the desert
where she had a place prepared by God.

Then I heard a loud voice in heaven say:
“Now have salvation and power come,
and the Kingdom of our God and the authority
of his Anointed One.”

What a shocker. I planned to get to Church early and ask someone else to do this first reading for me, but I ran late and arrived just in time to read. As I approached the lectern I was hissing "This is not funny God. Not funny at all'. I did read it. I got teary while reading it, and I did not read it well, but I got through it. It was a very uncomfortable experience. My parish was of course understanding, and if I had really started crying I know someone would have stepped in to do the reading.

I think this reading comes up once every 4 years (for the Assumption of Mary). What are the odds of me getting stuck reading it, the person in the congregation most likely to be upset by it. No, I don't think God arranged for me to do this reading. I don't think God arranges any of this stuff, not the appearance of parking spots or the occurrence of my name on a long-standing reading roster or the growth of bacteria in an unborn child's bloodstream. That's not how I see things these days.

Positives coming out of this : the expressions of concern for me from parishioners after Mass, and their assurances that they still pray for me. Also the Mons who was doing Mass commended me on doing well with the reading and told me he was worried for me when he realised I was doing that reading (this was the first time this man had spoken to me or even made eye contact with me since Salome was born). Negatives: a well-meaning parishioner telling me something along the lines of "God must love you very much to have taken your daughter and to have caused you so much pain to draw you closer to him" or such like. My brain didn't hang around to hear the details. I have had very few comments like this from people since Salome died, so the odd one here or there doesn't upset me too much. A few weeks ago a workmate told me Salome's death was God's plan. I wish I'd come up with something sleek to say to her in response, but all I could think of to say was "Well God can shove his plan up his arse." I don't think she was too offended.

Friday 6th August: E coli

Back on June 9th I wrote a post ("Back in the Saddle") about our autopsy results and how I didn't want to talk about them. I am now feeling more comfortable with people knowing about it, but I am probably still not up for lots of questions about it. Here is a summary of the whole sordid affair.

Basically Salome died due to an E Coli infection. To the best of everyone's knowledge, she was doing OK until about 24 hours before the birth. Then an E Coli infection made it into her bloodstream and she started to decline. The neonatologist estimates that the meconium came into the waters in the last 24 hours before birth, after she was already sick. Then she became distressed in the final stages of the labour, and inhaled the meconium. Then the umbilical cord got compressed in the final stages of the labour as well, which lead to more oxygen deprivation. Apart from the meconium and the perinatal asphyxia she was already sick with an infection. They instigated the treatment for meconium aspiration syndrome, but she didn't respond as they thought she should and that was due to the E Coli infection. That is why Salome did better on day 1 than on day 2, when the NICU team had predicted the reverse.

How often does this happen? I have found it hard to get an idea of how often this happens. In reply to my question about this, the neonatologist wrote: "early onset sepsis (that's the medical classification) happens 3-6/ per 1000 live births, with about 33% of them being E Coli. It is almost never related to what you have eaten. I'm sure that's not the cause." (Note that he wasn't saying that 3 to 6 of every 1000 babies die of early onset sepsis, just that that's how often early onset sepsis occurs). My obstetrician, who is very experienced, says Salome was only the second case she had come across in her career.

How did E Coli get to Salome? We will never know. The most common reason given in this situation is that the E Coli infection got into Salome's system via an 'ascending mechanism', which I am told means bacteria making it from the bowel to the vagina and up into the uterus once the cervical plug has started to come away in the last few days of the pregnancy. However, see the publication below that suggests this may not be the case as often as has previously proposed.

Does this mean I have E Coli? I think it means I did have E Coli. I did not have any noticeable stomach upsets in the last week or so before Salome's birth. It would have been hard for me to notice if I was sick with an E Coli infection. Firstly, I had already been nauseous every day for 9 months. Secondly Salome's birth was preceded by 10 days of pre-labour, which meant diarrhea was happening on each of those days. Thirdly, this occurred in the last week of January, so the weather was stinking hot. Would I have noticed if I had had a temperature? But we went to the delivery suite 3 times over those 10 days and they took my temp every time and nothing came up. I don't think I had a bacterial infection in late January, and both neonatologist and obstetrician has stressed to me that I don't need to have been sick at all for me to have passed the virus on to Salome.

Could Salome's death have been avoided? It is impossible to say. There seems to have been little or no indication along the way that anything was amiss. It may be that she had the E Coli in her system for a quite a while. I've been told it was probably in her blood stream for about 24 hours before her birth, but she could have been exposed to the E Coli for a lot longer than that. If we had somehow known she was sick and cesared (sic) on that day, Salome would probably have died anyway due to the E Coli. As soon as Salome's initial bloods came back, they knew there was something else going on with her apart from meconium aspiration syndrome, so the NICU team were already hitting her with every drug under the sun, including antibiotics. I guess the main causal factor is that E Coli. Could I have avoided the E Coli? Why did I have E Coli in my system? It is hard to remember what I ate in that last few weeks of the pregnancy, but I can't remember eating anything that was an obvious E Coli risk like salami, cooked chicken. But saying that I can't be sure.... Maybe I got cocky. Maybe I thought what harm can this food to my big strapping full term baby? I honestly can't remember. Or maybe I don't want to remember because the guilt and shame would be unbearable. If that's the case, lets let sleeping dogs lie. Seems to me E Coli can be passed on by a huge range of foods, and there are a lot of E Coli infections out there. I don't understand and I don't think I want to understand. It's too painful. Here's what else the neonatologist said in response to my question about why I can't just take antibiotics to rid myself of e coli: "...The infection only occurs at the end of the pregnancy (and will result in labour). Over half the mothers who delivered a baby with early onset sepsis did receive antibiotics during labour, even the sort which would kill E Coli. This means antibiotics is not always the answer...."

What does this mean for possible future pregnancies? So it is not possible to flush out E Coli from my system by taking a truck load of mega strength antibiotics. Apparently I now have what is not referred to as a 'colonised uterus'. If we did want to try for another pregnancy, I would first have a vaginal swab and get that analysed. Any current E Coli would be treated with antibiotics before we started trying to get pregnant again. Then I would have regular vaginal swabs through the pregnancy and I would be expecting to take some antibiotics through the pregnancy depending on what showed up on the swabs. I would then expect to have a Cesarean at about 37 weeks, after maybe spending the previous night in hospital on a drip having antibiotics flushed through my system and the baby's system before the baby was born. My obstetrician says that if we follow this plan, the chances of this happening again with another pregnancy are "low to very low". Not entirely comforting, I'm sure you'd agree.

Please find below a publication related to this topic. I am sorry I don't know where it is from but it has some references at the bottom. Whenever I read it my heart breaks for that poor pregnant woman and her annoying gingivitis. Then I think "But that happened to me too. That happened to my daughter and my family and my household." And my heart breaks all over again.

If I was the arty type I would choreograph a dance to communicate what I feel about this. It would include a lot of rolling on the floor, rocking, tearing of clothes, some wailing as well. I would call it '"colonised uterus". Maybe the soundtrack would be something / anything by Anour Brahem. I listened to an Anour Brahem album over and over as I laboured with Salome, and I am trying to claim his beautiful music back from those associations.

http://www.youtube.com/watch?v=ff_qwu57hok&feature=related

SUMMARY

Normal vaginal bacteria in pregnant, healthy women includes Escherichia coli (Hillier et al. 1993, pg. S276, Table 1). The standard way to identify bacteria is by taking a sample and culturing them in the laboratory (Han et al. 2009, pg. 38). But this can only identify less than 1% of bacteria, because most bacteria is not currently cultivatable in standard laboratories using current techniques and protocols (Han et al. 2009, pg. 38). Researchers are starting to use DNA technologies (in particular, identifying the exact sequence of the bacterial gene known as 16S rRNA, using the DNA identification technique known as PCR (Han et al. 2009; Han et al. 2010)) to more accurately identify vaginal bacteria and bacteria causing infections.

Bacterial infection in the uterus has long been known to play a role in spontaneous preterm birth (Han et al. 2009, pg. 38). Where do these bacteria come from and how do they get into the uterus? The current theory that we have for the last 20 years and perhaps longer, is that the bacteria originate in the lower genital tract, and invade the pregnant uterus via an ascending mechanism (Han et al. 2009, pg. 38). Another way that bacteria is thought to reach the uterus is via the blood stream, originating in parts of the body that are not involved with the reproductive system (Han et al. 2009, pg. 38). Han et al. 2010 report a case where a pregnant women’s baby died in utero on the day the baby was born, from a normal bacteria found in her mouth and not found at all in her vagina or rectum. It appears that the annoying pregnancy gingivitis that caused her bleeding gums during her pregnancy, plus a mild cold and temperature in the 3 days before giving birth, conspired to give the gingivitis bacterium a very small window of opportunity to reach the placenta via the blood stream, while the mother’s immune system was busy efficiently clearing the cold infection. Once the infection reached the placenta, there are no defenses against it. The mother’s immune system treats the placenta as a privileged foreign body and does not attack anything there, and so bacteria that infects the placenta then infects the baby.

Researchers are starting to suggest using the new DNA identification techniques to identify bacterial infection, so as to identify when and what specific antibiotics to use in pregnant women (Han et al. 2009, pg. 46). These recommendations will probably be carried out in scientific studies in the next few years, and if the results show that such strategies of bacterial screening and identification reduce the loss of babies in pregnant women that is currently caused by bacterial infection, then such strategies will probably be implemented as standard care for all pregnant women.

REFERENCES
Hillier S, Krohn MA, Rabe LK, Klebanoff SJ, Eschenbach A (1993) The normal vaginal flora, H2O2-producing lactobacilli, and bacterial vaginosis in pregnant women. Clinical Infectious Diseases, 16, S273-S281.

Han YW, Shen T, Chung P, Buhimschi IA, Buhimschi CS (2009) Uncultivated bacteria as etiologic agents of intra-amniotic inflammation leading to preterm birth. Journal of Clinical Microbiology, 47, 38-47.

Han YW, Fardini Y, Chen C, Iacampo KG, Peraino VA, Shamonki JM, Redline RW (2010) Term stillbirth caused by oral fusobacterium nucleatum. Obstetrics and Gynecology, 115, 442-445.

Thursday 5th August: A steaming cup, black and strong enough to stand a spoon in

Finally I am home alone! It has been 6 weeks since this last occurred. There is so much to write about. I'll start with the session I had today with Counsellor Jane, the first one I've had for 6 weeks (darned school holidays).

The topic of the day was anger. The last 2 weeks, around the time of the 6 month anniversary of Salome's death, I have found myself trying to stand upright in a fast flowing river of anger. Funny thing is, it was my hormones that started it. I was pre-menstrual, and that's never had me feeling angry before, but this time it was like the hormones lowered the wall of the dam and this huge water-wall of anger was on top of me before I knew it and it wouldn't go away.

Normally I am not adverse to anger. I wouldn't say it's my favourite emotion, but neither does it freak me out or scare me. But this anger is something else. The power of it was / is astounding. Of course there are triggers, and the triggers won't surprise you. They are things like

• thoughts about why and how Salome died,
• thoughts about how hard Salome's pregnancy was for me,
• thoughts about what life would be like for me if Salome had not gotten sick and / or had not died,
• being faced with another of the innumerable negative consequences of Salome's death on our little family,
• seeing my friends 6 week old daughter (the anger exists alongside a genuine happiness for my friend and her family),
• seeing the 6 month old baby who goes to my playgroup (born 2 days before Salome, bless him, and now a gorgeous chubby boy sitting up by himself),
• contemplating the memorial cards we need to write and the tombstone we need to organise,
• thoughts about whether Matt and I will ever be able to face trying for another baby,
• thoughts about the nausea and sickness I will most likely face if I ever get pregnant again.

There are also things that lower the dam wall further, that aren't connected with my grief but that nevertheless reduce my capacity to manage the anger, such as:

• lack of sleep;
• ongoing physical pain (from my back injury)
• hours of very clever baiting behaviour from X
• feeling stuck in the house
• lack of time to myself (I have an insatiable appetite for time alone and X seems to have an insatiable appetite for 1 on 1 time with me. A bad match.)

When I discussed this with Jane today she invited me to practice what I preach. How many times have I urged clients to get more comfortable with their anger? How many times have I talked with clients about the importance of acknowledging anger because otherwise the anger will go underground and pop up somewhere? Jane was reminding me that the anger is a huge energy that can be channelled in a constructive way. The question is what am I going to do with this anger?

When the sadness was with me I was more comfortable with that. I snuggled up on the couch with my sadness, and it was company in a way. My sadness was a very poor substitute for my baby, but my sadness for Salome was the closest connection I had to her. Now here at 6 months, along comes this anger, no less a part of the grief than my sadness was, no less worthy of respect than my sadness was. But I am not even prepared to offer my anger a chair. In fact I seem to be trying to cram my anger into a cupboard.

The problem is I can't be arsed with the anger. It's too tiring. It's unbecoming. I don't have the time to unpack it. But keeping the lid on the anger is no picnic either. The anger is like a mega-size strong black coffee, no sugar. It is not my preference to drink my coffee strong and black, but that's what the universe has set in front of me at the moment, and there is nary a soy decaf cappuccino in sight.

I have also been reflecting on the ways I have been complicit with people's impression that I am doing OK now and we don't need further support. I suppose now that I am back at work, I have more practice in presenting myself as doing well and in some situations a higher incentive to do so. I am indeed feeling better than I was 3 months ago. I am not proud of feeling better. I am proud of hanging in there, proud of working so hard to stay connected to Matt and the girls, proud of staying engaged in the world enough to let time heal me. If I was doing all those things as best I could and still not 'feeling better' (What do I mean by that anyway? Feeling less?) then I would I feel no less proud. No matter what emotions I have, I do Salome proud every time I get out of bed and re-engage with the world in whatever way I can. I suppose I am proud of the small decisions I make ever day to inch myself towards happiness and contentment. As for the reduction in unpleasant emotions, I have no more cause to be proud of that than of my hair growing back.

So let me be absolutely clear, at least in this comfy little forum where I can choose my words at leisure: I am not doing well at the moment. I am very angry that Salome got so sick, that a stupid bacterial infection left our daughter with such severe disabilities, and that she died before we could bring her home. I am angry that I find myself at age 37 contemplating one day attempting to do another pregnancy, something I thought I would never put myself through again. Otherwise I am angry about a whole lot of other trivial shit that just bugs me up beyond my low threshhold between calm and cranky and beyond that from cranky to angry.

Therefore, if you have had thoughts in the past about what you might do one day in the future when you see me or someone else in our house having a bad day, this might be a good time to start your engines. In the past some people have given me a kicking (at times quite rightly) for being quick to offer help but being crap at asking for help. Here I am once again proving that is not always the case :)

To finish here are 2 quotes I have found about anger that I like. I am also going to change the quote on this blog's banner some time soon.

The world needs anger. The world often continues to allow evil because it
isn't angry enough. ~Bede Jarrett

Anger as soon as fed is dead -
'Tis starving makes it fat.
~Emily Dickinson

Monday 26th July: Update

This was suppose to be my first block of time alone at home for 4 weeks, but X has chucked a sickie, so I am not alone much to my dismay. Here's the best I can do today: a loose consortium of thoughts and comments about life in our house over the past month:

1. Birthday party: I had a birthday party of sorts a few weeks ago to mark my turning 37. Almost all the parties we have had at our house for the past 6 years have been about our daughters, and I am out of practice at the art of grown-up parties. At Salome's funeral, we had a lot of out-of-town visitors who we didn't get a chance to spend time with. I didn't want that to happen again at my birthday party so I only invited locals to my birthday party. In the 3 days before the party I had about 10 people cancel (that will teach me to have a party the day after the end of a school term) and the day before the party I was nervous and wishing I hadn't organised it. However the night went well and I had a very very very good time. I wish I had a reasonable photo to put here of me in my eurovision-themed fancy dress, but in all the photos I have of that night I look like a hyperactive drunken crazy woman and I refuse to believe I really looked like that. God knows I felt like a rockstar at the time, especially when that man lent me his rollerskates. And lets not talk about the karaoke at the pub afterwards. I had warned people that I'm prone to bad behaviour in public venues where karaoke is available, because I am a terrible microphone hog. When it comes to karaoke I do not limit my art by such right-wing concepts as 'pitch' and 'tone', and I certainly don't share. The Rock Star Within only gets unleashed once every few years, so there's a lot of pent up energy behind her. You'd best get out of the way, keep your head down and cover your ears. My karaoke performances are always brief and passionate, with 100% commitment to the song. I am good at using the whole stage. I work well with props and I do good floor work. I am not good at sharing the microphone or the spotlight. I do not forfeit the stage gracefully at the end of the song. It's about working with your strengths, and making sure you only do karaoke at a place where you'd never want to return.



2. The hair: My hair was starting to get too long before my party. I wanted to have an Egyptian eye shaved into the back of my head, because I have a running joke with X about 'Mummy has an extra eye in the back of her head'. Apparently getting a shape shaved into the back of your head is expensive and in Newie it takes a while to organise. So I shaved it back to 12 mm again instead. When I originally shaved my head, there was a lot of symbolism in the act for me (see blogpost from My 3rd titled 'Please Sponsor Me' ). I would like to publicly proclaim that those factors are not directing my decision to keep on shaving my head. I am not feeling stuck in the stage of grief I was in. I am now shaving my head because much to my amazement, I really like how I look with a shaved head, and I love how low maintenance it is. Also when I eventually grow my hair out I know there will be an unavoidable 'toilet brush' stage, and I am not ready for that yet



3. The job: I am 4 weeks into my new job now. The project I am working on is this one: http://www.partnersindepression.com.au/site/ . I am developing some supplementary info packs to tailor the 'Partners in Depression' programme to specific target groups, such as people who care for someone who has both an intellectual disability and depression. Using my psych skills while having a break from clinical contact is fantastic. My workmates are good company too, although I am stuck in my own office down a weird corridor... Yes you read right, the newest person on the team, the lowest paid, only working 2 days per week and I get my OWN OFFICE!!! Back in my brain injury job it was 7 clinicians for 1 office, like the 7 dwarfs. My new job is at a different site of the same health department, but in terms of resources, we're not in Kansas City anymore Toto.



4. School holidays are overrated. X's behaviour was very difficult to manage over the holidays, so much so that I was counting down the hours for her return to school. So far this year we have made advances in reducing X's pinching, scratching, biting, kicking and hitting behaviours. That's a win for us and we cling to it for dear life. When X is wound up we need to watch her every second because breaching boundaries is her favourite hobby, and it often results in damage to property, her sister or herself. I feel like X's appetite for one-on-one time with me is insatiable. When she is tired or flustered it's like her frontal lobes are nonoperational and she has very little capacity for impulse control. Now that her body is bigger and stronger, this can lead to hair-raising behaviour, such as running straight across a road faster than I can catch her or throwing objects at my head with enough strength and accuracy now that they actually hit me. She and I have been at loggerheads over the past few weeks. I am finding it very difficult to enjoy her company, let alone to be mindful of how precious she is to me. Actually I find her exhausting and infuriating much of the time, and I often feel despairing of our parenting of her. But there she is every day, full-on and feisty, always on the look-out for an adventure (ie seeking risky behaviour 24 / 7 ), always curious about new things, consistently trying to connect with me by pushing my buttons until my fury at her behaviour brings me out of my shell and back to the present day with the 2 daughters I have still alive. X is a person who will not take a backwards step. One day I know I will be grateful for this aspect of her personality, but here in July 2010 it is giving me the super dooper hootenanny shits.


5. The gym: I am still going to the gym 3 times a week. I go early in the morning so I am back on board at home by the time the house gets busy. I now feel comfortable in the gym environment most of the time. My favourite time to go in 7 am Saturdays, when all the beautiful people are still hungover in bed. There's a woman who goes at 8 am on Saturdays who looks about 75 and she works out with a personal trainer. She is inspiring. So are the people who are obese who work much harder than I do. I hardly ever see the Knights these days, but that doesn't break my heart. I was complaining to Matt recently that lately when I do my usual gym exercises, I can't seem to get my heart rate as high as it used to go, and the machines tell me I am not burning off as many calories as I once did. Matt said that seeing as I had been doing a gym workout 3 times a week for almost 2 months I don't have grounds to complain about getting fitter. So I guess I have changed my opinion about the gym. I doubt I'll ever be addicted to the gym, but it is a good exercise option for winter.



6. Visitors: We have had several sets of visitors with us at our house over the last 4 weeks, which has been lovely. It was particularly good to spend time with some old friends who have known Matt and I before we were a couple, and for the decade since. There's something healing about people with people who have known us for long. It puts our current heartache into better perspective. One of our visitors is staying on for a while: Hermione the guinea pig will be staying with us for a few months while her family renovates and moves house. She's a sweet little thing, and I enjoy having her around.



7. Plastic surgery: Did anyone else see the interview on 7.30 Report last week of Blanche and Bob? Below is a look at the worst plastic surgery I have ever seen. Blanche was a reasonably attractive woman and now she looks weird. When she talks her face doesn't move. It's hard not to compare her with Hazel and sadly for Blanche she was never in the same league. Blanche was outclassed by Hazel on every front, always will be.

http://www.abc.net.au/reslib/201007/r599656_3894207.jpg?layout=popup

1. Election: I am trying but failing to care about the federal election. When either of the candidates come on the radio all I hear in my head is "You Haven't Done Nothing" by Stevie Wonder:

http://www.youtube.com/watch?v=Ji2ma2mfyhU

We are amazed but not amused
By all the things you say that you'll do
Though much concerned but not involved
With decisions that are made by you

But we are sick and tired of hearing your song
Telling how you are gonna change right from wrong
'Cause if you really want to hear our views
"You haven't done nothing"!

It's not too cool to be ridiculed
But you brought this upon yourself
The world is trying to pass us by
We want the truth and nothing else

And we are sick and tired of hearing your song
Telling how you are gonna change right from wrong
'Cause if you really want to hear our views
"You haven't done nothing"!

Jackson 5 join along say
Doo doo wop - hey hey hey
Doo doo wop - wow wow wow
Doo doo wop - co co co
Doo doo wop - naw naw naw
Doo doo wop - bum bum bum
Doo doo wop

You would not care to wake up to the nightmare
That's becoming real life
But when misled who knows a person's mind
Can turn as cold as ice un hum

Why do you keep on making us hear your song
Telling us how you are changing right from wrong
'Cause if you really want to hear our views
"You haven't done nothing"!
Yeah

And here's a funny thing, Judith Lucy talking about how she coped with loss a while back

http://www.youtube.com/watch?v=ivJjpFyXvc8&feature=related

Monday 19th July: A Poem

I typed this poem out for someone else a few days ago, and I love it so much I thought I'd stick it here too. The poem is by Petrina Barson, from her beautiful book 'Now We Are Four' which you can buy from www.cloudsofmagellan.net

The Facts of Life

1

In the early days
I felt I wore you
like some logo
on my face.
Amazed only
when the woman at the eggs
could not read your absence
from the creases and
undulations there.
My traitor face -
bland as an egg carton -
did not scream at her.
I wanted to tell her -
standing there reading labels -
of all the things
I was discovering
that I had lost -
each moment cracking open
to find you gone:
only four places at the table;
only three pink sugared biscuits
left in the fridge (you helped
to roll them before boredom
eased you back to Lara
jumping on the sofa);
only two children
in the rear vision mirror;
only one direction
that this blessed life drags us -
heels banging on the road.

2

It's half your little life
since I helped you onto the see-saw
and we tipped laughter
into each others' faces.
Two birthdays gone:
imagination
some failed artist
totally lacking the repertoire
to sketch you at five.
And memory no better:
a three-toothed old lady
driving her trolley full of papers
into the wind.
For you are fading:
this precious pain
that is my ice bridge to you
melting in the grimy flow
of circumstance.
Now I bump into it -
one fact among others -
as the river pulls me
to its own end
gaily ignorant of rocks
and plates of ice
hurling me down rapids -
a bony glissando -
then rolling me over
and showing me
(the bright sky).


I particularly love the line "This precious pain that is my ice bridge to you is melting in the grimy flow of circumstance". I very much understand the idea that intense feelings of grief are one of the few connections I have to Salome, so when i feel the sadness less and less, it is bittersweet.

Friday 16th July: Brief comment

Pressed as I am for time, surrounded as I am by washing, occupied as I am with a new job and school holidays, functional as I am with my lack of tears and easier social graces, I just want to say that today in the act of purchasing for a friend a card to congratulate her on the birth many months ago of her daughter, I was stunned again to realise that I myself had a daughter only 6 months ago, that I loved that daughter as much as I love my other 2, that I clawed my way through that pregnancy, that I did everything I could to grow her well and safely, and that right at the end she got terribly sick and she died she died she died. I had a baby and she died. She lived for 2 1/2 days in NICU with tubes down her throat and god knows how many drugs being pumped into her, born with a brain injury which got worse before our eyes as those 2 1/2 days went on. A fat full term baby in amongst the tiny premie ones, who were more likely to live than her. She had a short life, with no good and only bad, and then she died.

I just want to say that I miss my baby Salome, that this is grossly unfair, that although Salome's death is not news to anyone it is still a daily event for me, that the pain is enormous, that I still fret for her when it is stormy outside, that a world where healthy full-term babies die from stupid everyday infections is a fucked up world. I miss my daughter.

That's all I want to say.

Now I will do the washing up, fold some clothes, cry some more, kiss X and K in their sleep and go to bed. The grief gets platted into the day, and I do my best to relax into it when its at its most intense. It's like contractions in that way.

Wednesday 14th? July: I'm still here!

House guests + school holidays + technical difficulties (melt-down of the power point nearest our computer) + back pain + a lot less hours to myself because of being back at work = no blogging in the last 2 weeks. But I am still here and I am overall doing OK. I am embarrassed about how much I miss writing my blog! It's an important way for me to process where I am up to. I've got a list in my head of topics I want to write about. I feel like I would need to write full time for a week to get it all out of my head (I write very slowly). But when? Soon, I am determined it will be soon.

Monday June 28th: Dem bones dem bones

Here is the soundtrack to this post to listen to as you read:

http://www.youtube.com/watch?v=mVoPG9HtYF8&feature=related

Let's start with some trivia about us: we have a mirrored ceiling our bedroom. For those of you who didn't already know that I can assure you we didn't have it installed, it was already here when we got the house. They aren't the easiest thing to remove and it's not high on our list of things to do.

Now let me tell you about last week. On Monday my friend (let's call her Lisa) had a beautiful baby girl. This is the first cab off the ranks for us in terms of close friends having a baby since Salome died. Lisa had her baby at the same hospital as Salome and with the same Obstetrician as us. Lisa and her husband also already had 2 daughters at home about the same ages as ours. The birth of Lisa's baby had a bigger emotional impact on me than I thought it would. There's a whole other blogpost in that, but that's for another day.

Tuesday was a hard day for me emotionally, seeing my GP and then seeing my counsellor. Also seeing X and K's emotional response to the birth of Lisa's baby. I wasn't the only one whose grief got kicked off. By the end of the day I was saying to myself 'I can't do this any more. I can't keep managing my own grief and other people's too. I want a day off from being so mature and well-balanced about this situation."

Wedn morning I was woken at 5.10 by a pain in my back that was literally breath-taking. I had damaged my back somehow by rolling from my side onto my back in bed while asleep. We called GP Access and they said because I had a chest infection and had been coughing a lot I would need to checked out for a possible broken rib so they directed me to A and E (seems to me that's always how they story ends with GP access). Matt and I stuffed around for 45 mins trying to get me more comfortable, but he could do nothing that helped and the pain was increasing. So we called an ambulance as GP Access suggested. Then I was worried that X or K might wake up to find Mummy being taken to the hospital in an ambo. Thank goodness neither of them woke up.

Enter stage left 2 lovely young male ambos on the tail end of a night shift. "Ullo ullo what have we here?" say they. "I hurt my back just by rolling over in my sleep. Dunno how it happened. Hurts like the blazers." "Right. In your sleep was it?" they ask, straight faced, completely professional. I'm sure they get that sort of thing all the time.

Then they saw the mirrored ceiling. They still maintained professional vibe. Is anyone familiar with the pain relief apparatus called the green whistle? It's like nitrous oxide, but a milder dose in the form of a 20 cm long green stick. They activate it and hand it to you for you to suck on and it lasts for 45 mins. Fantastic. Once I had that they could roll me over and get me to sitting position, and I could go to the toilet and get dressed. But it also made me disinhibited, and I started telling the ambos about the bracket on the wall we removed which was for the video camera to be aimed at the bed (It's TRUE). One of them was a little shaken by still composed. Out we go on the stretcher to the ambulance. By then it's 6.30 am and my neighbour is off to work. "What have you done to yourself?" she asks once she saw I was conscious and smiling. "I've done my back in in my sleep". "In your sleep. Right. Bloody mirrored ceiling, aye?" She laughed and I laughed but then howled because laughing hurt (still does).

Off we go to the A and E at the Mater (hospital about 700 m from our house). I'm sucking on my green whistle for all I'm worth and I'm fairly disinhibited by then, so I start telling one of the ambos "Our daughter died 20 weeks ago. I might get a bit anxious being in an A and E.... I must say though this green whistle is chilling me out enormously." I tried to say 'enormously' but it didn't come out correctly. That was the only time these young blokes lost their composure: when I told them our daughter had died 20 weeks ago. "That's bloody awful " said one."I am really sorry to hear that". It was very sweet.

I have to say I had yet another positive experience in a NSW public hospital. I don't know whether making comments about Salome's death to the ambo had any impact, but I got a really good service at the Mater. I was seen quickly and given lots more drugs before being examined. One of the drugs, endone, they described to me as 'morphine in a pill'. I liked that one. How ironic, I thought. I had been worried about how I would emotionally go with being in an A and E, and here I am now feeling more not-anxious than I have for weeks. My handy hint for bereaved parents who are anxious about having to take another child to an A and E: fake an injury yourself and get yourself a green whistle or even better some endone. It works a treat.

I was discharged home with endone by 10 am. So in the end I did get my day off from feeling like I needed to manage myself to be emotionally neat and tidy, aided by 'morphine in a pill' which sent me into outer space but also made me nauseas. I had a lot of pain on Wedn and a fair amount on Thursday. By Friday I didn't need any painkillers and I was saying "I can't believe how bad my back felt on Wedn morning compared to how fine it is now". So Saturday morning I went to the gym.

I know, I know, in retrospect it was not the right thing to do. Going to the gym felt fine, but after the gym I bought the morning papers and holding them in a shopping bag really hurt. Who knows why, the knee bone is connected to the thighbone as they say. Sunday I was back in a lot of pain again, and today is just as bad. I am organising myself to go to a physio ad I am not going back to the gym for at least a week. My back frigging hurts.

But that will pass. My sadness and heartbreak will also pass. By far and away the most important thing that happened in this week was that my friend had a beautiful baby girl, and Mum and Bub are in good health. Congratulations to her and her family, and welcome to their new little Princess. Every baby is a blessing. Of all the people in Lisa's social circle, perhaps I am the most relieved at her baby's safe arrival. Maybe there is no-one happier for Lisa and her little family than Matt and I.

On a lesser note, I have finally got a job. Here's a happy song

http://www.youtube.com/watch?v=h4jBip3dc2Y

It's a big relief. I didn't make it to interview for the job working in the kitchens at the Mater, or for the job as a podiatry assistant with the diabetes foot care team. Good thing these people are prepared to give me a go as a Project Officer / dogsbody:

http://www.mindframe-media.info/

It's mental health work without the client contact which is just what I was after. I start on Thursday if my back doesn't prevent me.

Thursday 24th June: Hmmmmmm

I've just heard we have our first female Australian Priminister. I should be happy about that and I will be talking it up for the girls tonight, but it feels ominous to me. I don't hate Gillard, but I think she is more likely to lose than Rudd was. I am aghast at the idea of Abbott as Priminister.

Monday 21st June: 4 days until Red Nose Day

When I look back on my minuscule experience in the use of drugs in my late teens and early 20s, I remember my friends and I being stupidly clandestine about the act of making a purchase. (Not that I was ever party to a purchase, because my friends knew I would be useless at that and I would stuff it up. I didn't even know the language to initiate the interaction and I never learnt the correct language, even as a drug and alcohol counsellor). Some people I know have continued to smoke regularly into their thirties, but for them it seems drug purchases are no longer a covert operation, and more like one more thing on the shopping list with the milk and bread. Back in our 20s though I remember a lot of innuendo and cloak and dagger language, totally unnecessary for a bunch of middle class uni students trying to buy a single-use amount of cannibas from one of the many suppliers around the campus.


Now that we are in our late 30s, is it my imagination or do we now talk the same way about our marriage counsellors? Why is that? Are our lives so lacking in mystery that we need to invent it? Do we all feel like we are predictable and one-dimensional? If we need mystery, wouldn't lessons in pole dancing be cheaper and easier to organise?


I have heard that in Australia the rate of relationships that end within 5 years of the death of a child is as high as 70%, although some recent research suggests the rate is much lower at around 20%. Either way, Matt and I have already lost way too much to be cocky about what we have, so we have sought a referee for some of our relationship arguments that are on the repeat setting. I am thinking of it as primary health care for our marriage, kind of like an immunisation shot to stop our relationship getting tetanus.


So like I said I'm not saying this is something I know about personally. I'm not in regular contact with this person myself, I'm just saying I know someone who knows someone who is contact with this person and I hear that they are worth the effort. So if you find yourself in the situation where you need to contact someone who does this sort of thing for you, you could call Charlotte Ashford at Unifam in Bolton st Newie, ph 4925 6000. I hear she's good. Not that I know from my own experience, you understand.


More importantly, this Friday 25th is Red Nose Day, the annual fund raiser for SIDS and Kids. Please think of us and buy a red nose, toy, pen etc when you see one.

http://www.rednoseday.com.au/

Tonight is our local memorial service for people who have lost babies, run by SIDS and Kids. Matt will be going to represent our family.

This is funny:

http://www.youtube.com/watch?v=MmXA-XYISzc&feature=channel

And this is funny and freaky. If you look under popular posts my favourites are 'Lazer cat' and 'The cat's pyjamas'.

http://awkwardfamilypetphotos.com/

Thursday 17th June: Gumnuts

I've been given a lovely alpaca wool beanie to keep my head warm as the weather gets colder. It's soft and by far the warmest hat I own, and I wear it to bed on cold nights. When X or K put it on they look like cute May Gibbs gumnuts. When I put it on I look like an idiot in a tea cosy. I still wear it though. I even treated the boof-heads at the gym by wearing it there last week. I am sure my desirability rating shot up even higher, if that's possible.

It's been a stressful few weeks here. K's croup became a lingering chesty cough, which became an ear nose and throat infection, and then started to head in a pneumonia direction. Then we gave her some stronger antibiotics, and now she is rapidly recovering and she'll be fine. Along the way were 10 nights of poor sleep for her and I. On Tuesday night the stronger antibiotics kicked in and K and I got a better night sleep than we had for ages. My stress levels went down, so my adrenalin level went down and so... I got sick. Now K is bouncing around her childcare as usual and I am coughing like a 2 pack a day smoker.

Here are some triggers for my anxiety that I have discovered over this last 12 days:

• Worried-doctor vocal tone: This is the tone of voice that doctors use when they want you to listen and take them seriously but they also want you to stay calm. On Tuesday our GP used worried-doctor vocal tone to say 'K is pretty sick. You were right to bring her back in today. She needs stronger antibiotics. You need to watch her closely. I will want to see some significant gains by Thursday at the latest or you bring her in on Thursday. At the latest. And if she gets a temperature from here on in, you need to get her assessed as soon as possible." Hearing him say that in that tone did my head in. I was like a cat on a hot tin roof until K started to improve. I took her temp so many times she got the shits with me.
• Contemplating presenting at JHH for assessment: If K has gotten worse, we would have been advised to take her to the hospital where Salome died, to the A and E. I could have and would have done this if required, but it would have been stressful. I have been back on site since Salome's death a number of times, and every time it gets easier (except for the time I took myself into NICU and got stuck staring at the corner where Salome had been until Matt found me and sternly suggested I take myself elsewhere). If we had needed to take K in, we would have gone nowhere near NICU. I think the idea of taking K or X to JHH is worse than the actuality would be.
• Lack of sleep: I started getting ratty after about the 5th night. My sleep was nowhere near as broken as it would have been now if Salome had lived, but I think it is the combination of lack of sleep and anxiety that leads to more tiredness and therefore more anxiety etc.

Given the circumstances I think I got through the last 2 Weeks pretty well. The fact that I did so without consuming every one of the chocolates in that stupid fund-raising chocolate box from X's school is a miracle.

Never mind, tomorrow we are off on a long-anticipated family holiday for 2 nights and 3 fabulous fun-filled days in Melbourne where it is much colder and wetter than here. I intend to rid myself of this chect infection with verdelho and chocolate cake.

If you want to treat yourself have a listen to the worst football song ever:

http://www.youtube.com/watch?v=ANekGmySvPM

If you do listen, trust your own judgement. It really is as bad as you initially thought. Don't be tempted to listen again because I can tell you it doesn't improve with repeated listening. This song won a competition when the Dockers started. Imagine how shit the other entries were!

Tuesday 15th June: Black Ice

Happy birthday Mum! I hope you have had a good day so far.


Finally I have a good reason to go to the gym: my friend Kathy has dared me to towel-flick a Newcastle Knight. How is this to be accomplished without causing a ruckus or being evicted from the club? Can I use my unfit older woman persona to sneak under their radar, and get within range as they plod past on the way to the spin room? Should I pick on an injured one who can't flee? Suggestions welcome and I'll keep you posted.


I continue to go to the gym every 2nd day. I am happy to report that my last 2 visits have been a mood-neutral experience (my mood has been no lower when I left than when i walked in). I've also realised that walking on a treadmill machine on 'rolling hills' setting is better for my knees than walking on an actual rolling hill, because on a treadmill you never walk downhill.

Another win from the weekend just gone: I went to a grown-up party at night time, and stayed at the party for 2 1/2 hours without drinking too much. Mostly I had a grand time. There was an unfortunate incident in the final 45 mins when a lovely unsuspecting woman asked me how many children I have. I didn't have the composure to give a clean answer, so she copped the whole Salome story. Lucky her. Usually I say something like "That's a perfectly reasonable question but at the moment it's a bit hard to answer" or "18 weeks ago I had 3 daughters and now I have 2". Sometimes I just say "I have 2 daughters". I try to match the answer to how I feel and what the situation is. Add a few drinks to that though and I give the truth the whole truth and nothing but the truth, whether that's a good idea or not.

In other news, for our anniversary last week I bought Matt a copy of 'Black Ice' the AC/DC album from 2008. The first time I heard it, I felt my spine come into correct alignment and my whole body relaxed and said "Aaaaaahh". I think this is how I am suppose to feel when I do a yoga posture correctly but I have never felt like that from yoga. Listening to that album has the emotional impact on me of clicking my heels together and saying "There's no place like home, there's no place like home." It's a very good album, for those of us who like That Kind of Thing. One day I'd like to be as good at my job as Malcolm and Angus Young are at theirs.

Here's a funny woman:

http://www.youtube.com/watch?v=oP_H6h-pUrM&feature=related

"As soon as your father's dead I am lighting a damn cigarette. I'm not saying I don't love 'im, but I am looking forward to that cigarette, I can say that for sure." Funny.

Sunday 13th June: Quote from Harold S. Kushner

In 'When Bad Things Happen to Good People' by Rabbi Harold S. Kushner (my edition is the 1982 from Pan Books), Kushner writes as both a Rabbi of many years experience, and also as the father of a son who was born with a degenerative disease, lived his life in pain, and died aged 14 years. In the first chapter Kushner goes through the most common explanations people of faith give to the question of how God can be just and loving, as well as omnipotent, and still permit suffering to exist. I really like this quote below where he refutes the assertion often made to people who are suffering that God only gives us an amount or portion of suffering that God already knows we can bear:

The Talmud, the compilation of the teachings of the rabbis between the years 200 BC and AD 500, explains Abraham's test this way: if you go to the marketplace, you will see the potter hitting his clay pots with a stick to show how strong and solid they are. But the wise potter hits only the strongest pots, never the flawed ones. So to, God sends such tests and afflictions only to people He knows are capable of handling them, so they and others can learn the extent of their spiritual strength... Does God "temper the wind to the shorn lamb"? Does He never ask more of us than we can endure? My experience, alas, has been otherwise. I have seen people crack under the strain of unbearable tragedy. I have seen marriages break up after the death of a child, because parents blame each other for not taking proper care or for carrying the defective gene, or simply because the memories they carry are unendurably painful. I have seen people made noble and sensitive through suffering, but I have seen many more people made cynical and bitter. I have seen people become jealous of those around them, unable to take part in the routines of normal living. I have seen cancers and automobile accidents take the life of one member of the family, and functionally end the lives of five others, who could never again be normal cheerful people they were before disaster struck. If
God is testing us, He must know by now that many of us fail the test. If He is only giving us burdens we can bear, I have seen him miscalculate far too often."

FRiday 11th June: Some funny things

I continue to snoop around cyberspace for comedians. Here are some things I found tonight that made me laugh:

http://www.laughfactory.com/video-183787-Al%20Madrigal%20-%20Late%20Night%20with%20Conan%20O

http://www.laughfactory.com/video-183671-Frank%20Nicotero%20-%20Silent%20Fight

Here is some karaoke inspiration:

http://www.laughfactory.com/video-183755-Jason%20Stuart%20-%20American%20Idol

Wedn 9th June: Back in the saddle

Here is the soundtrack to this post:

http://www.youtube.com/watch?v=kimQ9ZGdCuE

Can you listen as you read?

As some of you guessed from my sudden halt in blogposts, our meeting with the NICU staff almost 2 weeks ago did not go well. We were treated fine, we were given all the information we could be given, and we asked all the questions we wanted to ask. However, much to our surprise there was new information presented in the meeting which lead to a different 'cause of death' outcome than we had previously thought. We thought we knew why Salome died (with a 16 week gap between her death and the autopsy discussion, how could we avoid developing our own story?) but we were wrong. The new story of why Salome died upsets me greatly, and I have not been doing so well emotionally since that meeting, in the sense of actually being in quite a shit state.


I understand that everyone wants to know what this new 'cause of death' thing is, but it is too painful for me to talk about it. I talked to a few people about it in the days after the NICU meeting, and now I've stopped because I find it too hard. Of course people are going to ask about it because I put it on the blog, and people are concerned about us and want to know we are doing OK . Just to clarify: I don't want anyone to feel bad about asking about the NICU meeting. I am very able to say I don't want to talk about it. I don't want people to feel like they take their life in their hands when they ask me how I am or what's been going on with me. It is just too too painful to talk about at the moment. I understand people want to know the 'what if' scenarios regarding Salome's birth, but the 'what ifs' already hound me at 3 am so I don't want to give them additional airspace.


I feel deeply deeply ashamed of how Salome died and it's an awful feeling. I have never felt ashamed before. I've had a standard allotment of guilt in my life (most of it well deserved), but that's different. Whereas my sadness-grief felt like a painful stretching open of my chest / heart, this shame-grief feels like my heart has turned to metal, and the weight of it is pulling my whole body down and piercing down through my chest. It's a very isolating feeling too. It's hard being around people when I feel like this, and I have trouble giving anyone eye contact or talking about myself at all. There is a pervasive feeling of being unworthy that's floating around like a stinky fog whatever space I walk into. Doing job applications when I feel like this is very hard. I know some people find my guilt and shame feelings uncomfortable to hear about so I don't talk about it much. I find pg 13 and 14 of this booklet reassuring:
http://www.sidsandkids.org/wp-content/uploads/AlwaysYourChild.pdf


This part of the grief feels like I am stranded in a freezing cold dessert at night alone with no protection or supplies. There is no comfort, no path to follow out, just darkness and cold and blankness. All the people saying "It's not your fault. It's not your fault" are like birds circling me in the dark 30 m above my head, squawking. There is a part of me that knows my feelings of guilt and shame are not logical, and that these feelings of shame will pass with time, so although it is awful I don't feel overwhelmed.


A theme to my shame has been a huge feeling of anger at my body. At first I just noticed those feelings and wondered if I should take any action to manage them, and while I busied myself with my non-judgemental stance, my comfort eating went through the roof. Empty packets of iced vo-vos and chocolate wrappers were blowing around our house like tumbleweeds in a western. Even before this, regulating my food intake in a healthy way has been tricky since Salome died. In my current muddle-headed state it is hard to distinguish feeling hungry from feeling empty. At times I have eaten not enough, at times I have eaten on automatic and thus eaten too much. Other times I have found myself eating lots of comfort foods in an effort to feel SOMETHING.... to feel ANYTHING... to cut through the numbness. Most of the time I need to consciously check in to what my body is feeling. Chats with other SIDS and Kids parents indicate that I am not alone in this difficulty. As said on 'theheirtoblair' blog below, the 7 stages of grief don't include a cupcake stage, but maybe they should.
http://theheirtoblair.com/2010/02/08/the-stages-of-grief-dont-include-a-cupcake-stage-neither-do-the-stages-of-weight-loss/

See also this writers comments on her dietary problems following her son's death:
http://mysteryoriley.com/2007/08/23/the-dead-kid-dietheres-one-you-dont-want-to-read/

As I whinged to the other parents at the last SIDS and Kids meeting "When am I going to start wasting away from my grief? I want to start wasting away rather than going in the other direction." My direction have been more waist-away than wasting away.


Clearly this anger at my body was changing my behaviour whether I wanted it to or not, so better to steer the change in some life-giving direction. The action I took was drastic: I joined a gym for the first time in my life. I am trying to pound out my anger on the treadmill and the boxing bags, rather than pounding myself internally, and I am trying to reconnect with my body as something worthy of respect rather than just a death trap for my daughter.


The problem is I fucking hate the gym. I hate it I hate it I hate it. I have always felt uncomfortable whenever I have strayed into a gym, which is why I have never joined a gym before now. In the gym subculture I am destined to always occupy the bottom rung of the pecking order. I suck at gross motor skills. I can hold my own on a dancefloor, but I can't catch a ball and the fact that I can't catch a ball doesn't bother me. Because my overall health has been good I have gotten along until now with going for regular walks. However, it is very dark at 6 am these days and it has often been raining, so off the gym I go.


When I joined up I asked for someone to show me how to use the equipment so I didn't hurt myself, and I was told that would cost extra. The first morning I went for a swim in the lap pool, I breached swimming lane etiquette and I got yelled at. I finished my swim then went home and cried. 2 days later I fronted up on a Saturday morning and introduced myself to the treadmills. A staff member showed me how to use it after I asked him, but he seemed uncomfortable about being seen talking to me, as if he didn't want to get busted providing customer service. I fell off the back of the treadmill once, but I lived to the tell the tale and I didn't cry. 2 days later I did a Zumba class. It was fun, but it hurt my dodgy knees and I won't do it again. I then paid for a trainer to show me how to use the machines and give me some ideas, and that was worth it. I aim to go every second day for one month, and then never set foot in that godforsaken place again.


Matt said I should "Think of the gym as a big playground, because that's all it is". I was speechless. Him top of the pecking order in gyms. Him gold star ex-competitive power lifter. Him good at any sport he tries. You sporty people, you have no idea what's it's like for the rest of us! (queue sad violin music). Never mind, I kick his arse at karaoke and that's what matters.


The gym I have joined is the official hang out of the Newcastle Knights. God help me. The Knights are everywhere. On Thursdays they strut around looking wired, and on Mondays they skulk around looking forlorn and hungover, strapped up like salamis, some big, some not-so-big but still massive up close. Some of them weigh about 5000 kg. One of them looks like he weighs only about 90 kg and he walks on the balls of his feet like he could shoot off on a 100 m sprint whenever he wants. Unnerving, but very Newcastle to see them wandering around while I am doing my warm-up stretches.

In other news:

• I am doing a job application a week and getting all sorts of interesting knock-backs.
• I have had a session with spiritual director June and I'll be seeing her again in a few weeks. At her suggestion I am rereading 'When Bad Things Happen to Good People" by Rabbi Harold S Kushner. To state the obvious, it is a really good book.
• It was our 8 year wedding anniversary yesterday. I'm trying to regard this year as the equivalent of a survivor show for our marriage.
• X finished the book about Salome she wrote and illustrated with the help of Sr Jennie the school chaplain. It's beautiful and she's very proud of it.
• K has had croup so hasn't slept well for a week now.
• Here's something that made me laugh (inappropriate content including swearing DON'T OPEN IT AT WORK)

http://www.youtube.com/watch?v=pwb94cAzMpU&NR=1&feature=fvwp

I need to find a job and apply for it within 2 hours. No problems : (

Sunday 30th May: Eurovision

I want to record my Eurovision tips before I find out who won. We are big fans of Eurovision at this house, and we are looking forward to the delayed broadcast of the finals tonight. Here are our votes:

I think the best song is from Denmark http://www.youtube.com/watch?v=WBUHxPNQa1w But because it is the best song it almost certainly won't win, such is the way of Eurovision.

I think the winner could be Greece 'Opa', http://www.youtube.com/watch?v=oH-ceG9fJW4 but I don't know how the financial crisis will affect the voting. Eurpeans may say "Haven't we given Greece enough this month? Do we need to give them Eurovision as well?" I don't like 'Opa' hugely, but when i woke up this morning it was going through my brain, which is a sign of a Eurovision winner.

K is going for Azerbaijan 'Drip Drop' http://www.youtube.com/watch?v=VxJsFWwA6NU In the live performance, the singer wears a dress with blue lights that flick on and off when she sings.

X is going for Armenia 'Apricot Stone'
http://www.youtube.com/watch?v=c8dvxUv3XyY&feature=related Her hair makes her look like a Armenian Barbie, which might be part of the allure for X.

I'd love to go to Eurovision one day, for the costume reveals, the wind machines, the bad lyrics, and energy and hype.

Friday 28th May: Poem by Rainer Maria Rilke

Here is a haunting poem by Rainer Maria Rilke, sent to me by my friend Jane:

And it was almost a girl who, stepping from
this single harmony of song and lyre,
appeared to me through her diaphanous form
and made herself a bed inside her ear.

And slept in me. Her sleep was everything:
the awesome trees, the distances I had felt
so deeply that I could touch them, meadows in spring;
all wonders that had ever seized my heart.

She slept the world. Singing god, how was the first
sleep so perfect that she had no desire
ever to wake? See: she arose and slept.

Where is her death now? Ah, will you discover
this theme before your song consumes itself?-
Where is she vanishing?.... A girl, almost...

I wonder what this poem is about. Is it about Rilke's bigger sister who died at only 1 week's age? Wikipedia tells me Rilke's Mum dressed him in girl's clothes for a while because of her grief for her baby daughter who had died before Rilke's birth. Wikipedia also tells me that Rilke's main partner was a woman called Lou Andreas-Salome (great name!), and the description of her life reads like a parody of bohemia http://en.wikipedia.org/wiki/Lou_Andreas-Salom%C3%A9 . I hope they had fun! Sounds exhausting to me.

Thursday 27th May: Tombstone chat

We had a bloke here this morning giving us a quote for a tombstone - sorry 'memorial stone' - for Salome's grave. Here's a handy hint from the world of the bereaved: if you need to interact professionally with people who have recently experienced a death in their family, no matter what part of the death / funeral / burial / memorial / death certificate / autopsy process you encounter those people, no matter how long it has been since the death, after introducing yourself the first words out of your mouth should be something like " I am so sorry for your loss". There. Simple. It's not rocket science. There might be more ornate and heartfelt things you could say, but in my opinion "I am sorry for your loss" is an elegant base-line phrase. Going into the house of a recently bereaved family can be very socially awkward, but if you do this regularly as part of your job, then YOU NEED TO BE IN THE HABIT OF SAYING SOMETHING TO ACKNOWLEDGE THE LOSS. If the death / funeral business is your bread and butter, you've got even less excuse to avoid expressing some basic phrase of condolence. If you really don't know what to say then say "I never know what to say when I am in front of parents who have lost a child. I can't think of anything to say."

The bloke we had here this morning was perfectly affable, competent, and helpful, but I have almost dismissed his quote because he did not acknowledge our loss. I know he has a mixed business, but his 9.30 am appointment today was not giving a quote for kitchen bench tops or bathroom cabinetry. His 9.30 am today was here at our house to talk to us about our need for a tombstone resulting from the death of our baby girl. It's fucking important, and it's very sad, and he seemed unaware of either of those aspects of the situation. More important than what sort of marble we choose, what colour paint for the writing, or what shape the stone is, the whole point if a tombstone is to honour the dead and provide a physical focal-point for the bereaved. It needs to be done right.

Matt's reading over my shoulder and says he thinks this bloke gave us a good quote. Matt thinks I am too exacting in my expectations of people. This bloke today was telling us in detail about some surgery his pet dog had yesterday! I am glad his dog is doing well, and I am suitably shocked at the cost of removing a benign tumour from a pet, but he was here to talk about our daughter's tombstone. You all know I do not expect people to act sad around me, or to keep the rest of their lives under wraps while I am in the room. I am not sad all the time myself, and I make a lot of jokes about my grief. Maybe it's like that line from Kath and Kim where Kel makes some critical comment about Kim in Kath's hearing and Kath says "Hang on Darl, I can say it, but not you."

I'm not making any assumptions about this bloke who was here today. Maybe he'll go home tonight and say to his partner "I had to give a headstone quote for a family for their little dead baby girl this morning. Urk. I hate given headstone quotes when it's for a dead kiddie. I get churned up and I don't know where to look or what to say and I start blathering on like an idiot because I just want to get out of there ASAP." He might look back and think "I can't believe I talked to those poor people about my dog's tumour! I'm an idiot!" I've learnt since Salome's death that people who give odd brisk responses to our situation are often people who have experienced something similar themselves. Ok, I'm talking myself around now. I probably shouldn't dismiss his quote.

Maybe I am being overly sensitive today because this afternoon we are going to NICU to meet with the NICU team to discuss the autopsy results. We are going in a bit earlier to see how I go being back at NICU, and if I feel uncomfortable being in NICU, we will have the meeting somewhere else. I can't think of any questions to ask of the staff. The 'Why? Why? Why?' stuff is more an emotion than a question. The NICU staff seem to understand this. Wish us luck.

Friday 21st May: Posts out of order

I just put up a new post,a long one about the girls but it has come up out of order, so if you're interested it has come up 2 posts back but under today's date and titled 'So how are the girls?"

Thursday 20th May: Feedback to God and Me

Matt had some comments to make about my last post about God and Me. Firstly he firmly suggested that I had misrepresented Fowler's stuff, and that I shouldn't oversimplify it just to critique it. http://faculty.plts.edu/gpence/html/fowler.htm. I guess I shouldn't make dismissive comments about that stuff when I share a house with someone who did a thesis on Fowler.

In case any of you read that post and thought "Whoooooooa I am very glad I am not June the Spiritual Director! I wouldn't want her job!", I can reassure you that June is a very experienced spiritual director. There was nothing in that last post that hasn't been felt and said a million times before by people who have grieved and wrestled with their faith. See the book of Job for precedent. So while you and I may not know what to do with all my rage, disgust and angst, for June I suspect it will just be another day at the office.

Matt also said "You're funny in your relationship with God. It's all OK or it's a huge barmy." I don't know if that's even true, let alone whether it's unusual. I can see that that's how it might look from the outside.

Salome was my daughter, so my love for her was enormous and fierce. Consequently my grief is enormous and fierce. That's just how it is.

Friday 21st May: "So how are the girls?"

"So how are the girls?" is the question I get asked a lot at the moment. The quick answer is they are doing well, given the circumstances. When it comes to grief in children, I go by a 'better out than in' principle which may or may not be sound psychological practice. I don't care so much how their grief is coming out as long as it comes out somehow.


K, at age 4, has right from the start done most of her grieving through play. This was particularly the case in the first 2 months after Salome's death, when K engaged in hours of ruthlessly accurate death-related play. Before Salome's birth K had done a lot of birth-related play, and in the week leading up to Salome's birth K was "birthing" 3 or 4 toys per morning, complete with labour pains and shouting. In the first month after Salome's death K had her beloved bear S in a cardboard box, and she dragged it around with her everywhere. K told us S was very very sick and had lots of tubes attached to her. K would refuse to come to the table to eat meals because she needed to stay with S because S might die. The girls' bedroom became a NICU, with other toys were set up around S's cot so the other toys could help care for S too. K did a lot of vomiting noises, and told us S was getting worse and not better. It was important for K that I interact with her about this play. I tried not to shut the death-related play down, but sometimes her play was too accurate for me and it felt like groundhog day. If I moved to another room K would follow me with S in her cardboard box NICU cot, and would try to get me to talk to her about whether or not S would die. Sometimes with a tone of "MY baby isn't going to die because I am looking after my baby VERY WELL and I am taking GOOD CARE OF HER" said with stern reproaching looks to me. Hour after hour, day after day, this was a little hard to take. About 3 weeks after the funeral, the death-related play changed, and the lid was firmly placed on the box with S inside, which was heartbreaking to watch. Then all the toys in the house got put in boxes with the lids on them, and when K ran out of boxes she started putting toys in saucepans with the lids on them. Then for a while the lid was on and off the box with S in it, and K sometimes reported that S was starting to get better. Then the box with S in it started to be other things, like a car, a bus or a picnic space. I remember though that it was a long time until S was out of that box regularly and how happy I felt when K announced that S wasn't going to die and was definitely going to get better.


X, aged 5 1/2, is much more of a talker, as well as more of a worrier and a stewer. For example, last Monday she asked me "Mamma, now that Salome is dead can we have her stuff?" What she was after was Salome's clothes to put on some dolls. She accepted my response of "NO!" and I have promised to get her some more doll clothes from somewhere. Below of some of the other themes in X's talk about Salome:

The other family: X has her own views on the afterlife and Salome's death, and as with X's views on anything, these are strong opinions firmly held. A few days after Salome's death, X started to talk about Salome's other family in heaven. X told me that Salome has a new nuclear family in heaven, consisting of people X knows of who have already died. X told me Salome's mummy and daddy in heaven are Nanna and Grandpa Charlie (my maternal grandparents, Annie and Charles who died only last Oct). X asked repeatedly whether Nanna was any good at breastfeeding babies. My Mum assured X that as a mother of 6, Annie was good at breastfeeding and loved babies, so Nanna got the nod as the mother figure in heaven. X said Salome's grandparents in heaven are Pappa's mummy and daddy (my paternal grandparents Sheila and Charles) who X doesn't know the name of but talks about as 'those people in the photos at Nanni and Pappa's house". X said this heaven-based nuclear family also had a dog, Cobar who was my brother's lovely old cattle dog who died a few years ago. X developed a strong narrative about this other family, and talking about what they were doing minute by minute was everyday conversation for her. I must admit sometimes this gave me the shits too. For example I would be in the shower with X and she would say "I think in heaven Nanna has already given Salome a breastfeed, because Salome is only a baby and she needs someone to give her breastfeeds. And now Nanna and Grandpa Charlie are given Salome a bath too. So Mamma you don't need to worry about Salome because Nanna and Grandpa Charlie are giving her her bath tonight." Sometimes hearing this would make me get teary, and X would try to comfort me by broadening out the narrative and telling me what else the other family had been up to during the day. This strategy, though well intentioned, was rarely effective. Sometimes this would make me cry even more, and i would try to change the subject and x would say "Mamma I can hear you are talking with your crying voice. I don't like that crying voice. I think I will tickle you to make that crying voice stop." These images X gave me have stayed with me, and they were part of that 'personalised film clip' I wrote about back in the blogpost on 20th April.

The diorama: About 6 weeks after Salome's death, X's class was given a homework project of making a diorama. X was asked to choose something living (plant or animal) and work with a grown-up to make a depiction the environment that thing needs to live, including food, habitat, stimulation needed etc. The first time I asked her what living thing she wanted to depict she instantly said "Salome".
Long awkward silence, with me silently chanting 'better out than in, better out than in'. Then I said "But your project is suppose to be about a living thing. I think there might be a problem doing Salome. Can you think what that problem might be?"
X said "Salome's dead?"
"Yes" I replied, "Salome is not a living thing now. You and I are living things, but Salome is not living any more."
"But Salome is living in heaven. I want to do my project on what she needs to live in heaven." There was not a lot I could say back to this, suspended as X is in a world of catholic imagery about the afterlife. I didn't want to mess with whatever view of the life after death she has, but I also felt nauseous at the idea of completing a diorama about Salome.
I talked to my counsellor Jane about it, and she thought that X might benefit from having her view of Salome in heaven depicted in a concrete visual way. Jane suggested that making a diorama about Salome in heaven might be calming for X, and X can keep it in her room. "Think of it as making a shrine to Salome" said Jane, and I thought yes I can see the wisdom in that. We might have to do a whole other diorama to take to school, but I can see the value in X making a Salome diorama. I started to think about what we would need to make the diorama / shrine, such as photos of my grandparents and of Cobar. Soon after I said to X "Hey X we better get started on that diorama about Salome. What will we need to get?"
X replied "I don't want to do my diorama about Salome. I want to do it on dinosaurs."
By that stage I has psyched myself into the task so much that I was disappointed that X had pulled the plug on it so I said "Well dinosaurs are dead too, so they're no better." X wasn't committed to the dinosaur idea either and in the end we made a fairy penguin (see post from 18th March for photo).

Auditioning for replacements: X has often tried to comfort me by telling me I will see Salome soon when I die. If she catches me crying, she says "Don't be sad Mamma. When you die you'll go to heaven and you'll see Salome there and then you can give her a cuddle. You'll see Salome soon." Noble sentiments, or so I thought. About 7 weeks after Salome died, X added a few extra words onto this that put it into sharper perspective:

"I am sad because Salome is dead. It's alright for you. You're going to die soon and then you'll see Salome in heaven. But I am not going to die for a long time and so I won't see Salome for a long time. And anyway, after you are dead who will Daddy's next wife be? Can I pick who it is because I don't want it to be anyone nasty."

OK. This shone a new light on this matter.
" Why do you think I am going to die soon? I am very healthy. I'm not going to die soon, Love." says I.
"How do you know you are not going to die soon? Because sometimes dying is a big surprise to people" says X. This was a line from a book about death we had been reading as a family. After telling X over and over that sometimes people die unexpectedly, I didn't feel like I could give her a 100% guarantee that I wasn't going to die. So I diverted her (unsuccessfully) "And anyway, why do you think it is me who will die?"
"Mummies die first and then there is a new wife" she says. There followed a discussion about the occurrence of maternal death and evil stepmothers in literature, and for a while after that we banned the reading of Cinderella, Sleeping Beauty, Snow White, and The Wild Swans. I am still giving a wide berth to the whole Brothers Grimm genre, because they sneak evil stepmothers in everywhere.

Get on with it: X wants us to have another baby, and she started petitioning for this the day I came home from hospital after Salome died. "Mamma, you don't take that medicine that stops people having babies. You need to have another baby and when it is a girl we will call it Salome. Make another baby right now." A few weeks ago I got nauseous from a virus, and when X saw I was off my food at dinner she was ecstatic. She shouted "You have a baby in your tummy! Hurray! Hurray!' and then she put her mouth on my tummy and shouted "Helloooooooooooo!" She was sad when I told her there was no baby in my tummy, and she has accepted it. For now.

All these above were uncomfortable but there has only been once when something X has said has really upset me, and that was when I snapped at her about something trivial and then she saw me crying and said "It's OK Mamma. I know you loved Salome more than me. I know that because I see how sad you are that she is dead." That really really upset me. That is a whole layer of fucked up that I DIDN'T SEE COMING!!!!!! It took me a while to gather myself enough to talk that through with her. When I told I would just as upset if she died, she didn't believe me.
So the girls are I think doing OK for 2 little girls grieving the loss of a sibling they hardly knew. X benefits a great deal from her time with the school chaplain. K's dolls and stuffed toys still vomit constantly but none of them are in NICU. I am sticking with my 'better out than in' principles. I am very proud of how X and K have responded to their sister's death, and even when it makes me flinch their 'realness' about what is going on is inspiring. They help me get through.