Wedn 28th April: International Babylost Mothers Day

It is only a few more days until International Babylost Mothers Day (IBMD), which is Sunday 2nd May.

http://internationalbabylostmothersday.blogspot.com/2010/01/about-ibmd.html

IBMD was started by Carley, who runs the 'To Write Their Names in the Sand' site. As I understand it, the day is intended particularly for women who have lost their only child, to recognise them as continuing to be mothers. However, it seems the meaning of the day has evolved and extended, and now it is also a day for women like me to remember myself as Salome's mother, and to brace myself for the painful hallmark tomfoolery ahead the following Sunday on Mothers' Day.

On Sunday 2nd May I will be watching the dawn at a nearby beach with a friend who lost a baby a little while back. Hopefully we will have the beach mostly to ourselves and we can write our babies' names in the sand as much as we want. We might even get some good photos out of it.

Tuesday 27th April: Leave without pay

I think that X is doing it a bit tough at the moment. Her behaviour lately has been off the scale, and Matt, K and myself all have more than the usual number of bruises. Also, before Salome died X was wetting the bed about once a week. Since she died this has increased a lot, and last night X wet the bed three times, and K wet the bed once as well.



Consequently, and futhermore to yesterday's post, as of today I am taking leave without pay from acting like a parent. I will continue to feel like a parent and think like a parent, but for the next 7 days I am trying to act like a competent, lovable nanny. I will keep the girls safe and put food on the table. I will stop the house descending into a pigsty chaos. I will stick to the routines already prescribed, including the current starchart to stop X hitting / kicking / biting / scratching us. But for the next 7 days I am taking a break from trying to change how my daughters behave. I aim to avoid going head to head with them unless their safety is at risk. I will not try to increase their skills and I will not try to reduce their 'challenging behaviour' by introducing yet another blackmail strategy. I will not spend energy and time hounding them to clean up more than they currently do. Instead I will try to spend the next 7 days enjoying my daughters and spending time with them.


Maybe this will help settle X and K. Maybe it will help me settle. Even if it has no positive effects, I need a break from the constant argy-bargy with X, such as the meltdown we had this morning when I asked her to put her dressing gown back on a clotheshanger after she had taken it off. I suspect me taking a break from trying to improve her behaviour won't make any difference. If that's the case, X has been a ratbag her whole life, so another month won't make much difference. If her behaviour does deteriorate further without me hounding her, I guess that tells me that what I am generally doing does have an impact, which would be a positive outcome too. My priority though to see if X needs more comforting and more one-on-one time as she grieves for Salome. I need to scrape together what's left of my Empathy Tokens, sticky tape back together the shreds of my Emotional Resiliance, and get very close to this little person who I love dearly but who is behaving in a way that makes it very difficult for me to like her. I feel very emotionally depleted myself and I find it hard to cop X's physical anger. There is not much fuel left in the tank emotionally, and the emotional demands of the situation are not decreasing.



Here is something that makes me laugh that I've already flicked to some of you. It's Jason Byrnes at the Gala. I particularly like the quote "Don't panic. They're just ramps."

http://www.youtube.com/watch?v=e6y_rzNp6b0

Monday 26th April: Salome in Wales

This picture was taken by our friend Nick at Oxwich Bay on the Gower Peninsula in South Wales. Our girl is travelling the globe, at least in spirit! Thanks Nick.

I was telling Jane the Counsellor the other day that I am sometimes aghast at the vastness of this grief. The intensity of the grief varies greatly from minute to minute, but even in the less intense moments I'm aware that the grief stretches on and on before us. It's like I find myself in the middle of a red-dirt desert, and it stretches out to the horizon as far as I can see in all directions, with no rabbit proof fence to find my way out.

Jane said that I need to to learn to live in the grief, rather than just living through it. I can't stop my life, do the grief and then start my life again. This is my life now. This is the new normal. I'm going to be in the desert for a while, so it follows that every now and then it is OK to stop trudging, string up a make-do shelter and rest for a bit.

Time to take stock of what I've got in my imaginary backpack out here in the desert. I find I have got some supplies of physical energy, a bit of broader perspective, a more than adequate amount of anger, very few tears left for now, and absolutely no supplies of give-a-shit. Clean out of give-a-shit. None at all.

These are the things I won't be bothering with this week:

• arguing with K about cleaning her teeth;
• holding my tummy in;
• putting on a brave face;
• managing other people's emotional response to Salome's death;
• keeping the house tidy;
• helping X complete the stupid amount of homework assigned to her;
• showing up to social engagements I don't want to go to because I think it will 'be good for me' or because I know if I don't go people will worry;
• making myself stay in social situations which are difficult ie where there is a baby;
• cooking squeaky clean, well-balanced meals;
• instigating major changes in how we manage X's behaviour; and
• chastising myself because X's behaviour has been dreadful over the last 3 weeks.

I will add to this list as more things occur to me. I also think I am becoming more able to talk about events around Salome's death, what happened etc. If anyone's got questions about it, please do ask and in my current mood you can be assured that if i don't want to talk about it I will tell you so!

Some of you might remember a party I went to years ago where I drank far far far too much and kept falling off my thongs. Ah the heady mispent days of youth! I therefore prefer to think I am laughing with this bloke rather than at him:

http://www.youtube.com/watch?v=0Au_8GMUxVs

Sunday 25th April: The gospel according to Tom Waits

Anzac Day today, and it was a comfort to me to think I wasn't the only person to spend the dawn thinking of someone who had died. Matt has been known to comment that since Salome died, every day is Anzac Day at out house, and once he hummed the last post as I stared out the window at 6.55 am. Cheeky bugger!

I can't find my church roster, and I thought I was down to run children's liturgy today, so I scratched something together last night about Jesus the Good Shepherd baaaaaaaaaaaa. We arrived a few minutes late, the procession was already happening, and the bloke taking up the big bible was hissing at me "It's OK, I've got it, I'll do it for you." That's never a good sign! I checked the roster at the door of the church, and I was down for readings not children's liturgy. So I went up there cold to find a big Acts, and a lively Rev reading. I find the trick with Hebrew place names is don't try to say it right, take a guess and say it with a lot of confidence.

So why and I going to church at all? I've got no answer. Mostly I go for the people there, who have been very loyal to me and to my family. Also, it is one place I can go where I know there are other people who have had a son or daughter die and who have lived to tell the tale. Like most Christian parishes in Australia my parish has a fair number of women over 70, and those women are much more likely to have lost a baby themselves than are women from the generations that have followed. I don't know many women my age who have had a baby die after birth, but for their cohort it was not uncommon to 'lose one' along the way, just as it was not uncommon to have 6 or 7 kids and live in a 2 bedroom miner's cottage. Many of the older women in my parish have told me since Salome's death of their own loss of a baby years ago, and they have grieved with me about Salome. So these older woman are good company for me.

Another reason I go to church is to spit venom at God with some images to aim at. And there is plenty of venom to spit these days.

This was the Tom Waits song that summed up my experience of Good Friday this year:

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

This second Tom Waits song summed up why I showed up to church on Easter Sunday, and why I continue to show up to church sporadically. It's not an adequate answer to the spiritual wilderness / dark night of the soul / cloud of unknowing stuff I am experiencing, but it's the best I've got for now. Also I love the clip. Tom Waits' weedy body never looked so good.

http://www.youtube.com/watch?v=-GugzLSbOQE

Tuesday 21st April: Poem by Petrina Barson 'Fairy Dress'

Here is a poem I have been reading by Petrina Barson called 'Fairy Dress' from her book 'Now We Are Four". (For more about this book and where to purchase, see http://www.cloudsofmagellan.net/Now%20we%20are%20four.html)

Fairy Dress

You would have had a clear opinion.
But we let tears dissolve us into neither shore.
It seemed such a big decision:
how would we dress you
to send you off.
The blue one to match your eyes
or the pink -
your favourite
for flitting around the lounge room.
Stockings for warmth
a book on your pillow
to whisper our love.
Knowing we were deceiving ourselves
somehow
made it more urgent.
This pretence of dignity
is all we have;
these final acts of parenting
so wasted on you
so beside the point
when the only point
is that you are gone:
gone from this much kissed
washed, stroked, dressed
coaxed, held, bounced
body that is your momento.
Now we are left
to manage memories -
sort them into the least
most painful configuration -
your absence screams
through all the photos
and the footprints.
We choose the pink one -
dress you one last time
spend all the reverence
we were saving for your wedding
your first day at school
your first child
on making sure your fairy wings
are not crumpled beneath you.

This really says it. The day Matt and I went with the girls to settle Salome into her coffin was a stand-out moment in this cavalcade of fucked-up events. It was sacred and beautiful and peaceful but it was also horrifying and.... don't know the word, maybe there isn't one. It's one of the memories that has a huge 'approach with caution' sign on it in my head. I don't even give a glancing look sideways at that memory if there is not someone close by to take over whatever task I am doing and to clean up the mess. On that day, all that huge emotion got boiled down to tiny decisions about where in the coffin to place the photos and letters, what to say to her, how much stuff to put in there, what to say to the girls about the fact we were talking to Salome after assuring them that Salome was not in that body any more. And as a backdrop, the innescapable fact that it didn't matter what we said or did, Salome was gone and her little cold body lying before us was the proof.

I love it that Petrina refers to this process as an act of parenting. We very much felt that it was parenting we were doing for Salome, and for us it was the only parenting we got to do for her. Putting our daughter in a coffin, writing her eulogy, escorting her empty body to it's grave and lowering it in; these were all parenting tasks. As was whispering to her as she died that the angels were coming for her, that she shouldn't be scared, that the angels were all around her and they would carry her to God. This was very painful parenting. If I could do it again tomorrow though I would, because in that intense pain and that activity, there was an intimacy with Salome even after she had died. There is no longer any mothering I can do for her, and that is another loss to grieve.

Monday 20th April: A flimclip about me and Salome

Over this weekend I have had an imaginary filmclip playing in my head. I've had the song 'You Know Me' by Robbie Williams going around and around in there, and some drama-queen part of my brain has made up a filmclip about me and Salome to go with it. It sounds grandiose, but these images are helping me cry, and crying is helping me feel better.

In this, Salome is pictured as a fat very smiley cherub with wings, presented in some way to suggest she is different to me but real (animated perhaps? pixar-ish? Something with warmth, that isn't comic?). In the filmclip, Matt and I can't see Salome at all.

First shot: Salome being held in someone's arms. Pan back to show she is in the arms of my grandmother, who looks different-to-me-but-real in the same way as Salome. Salome smiles, wriggles out of her arms, kisses my grandmother on the face, then flies away. Flies towards sun where she adjusts some of the rays, and then fluffs up the clouds in front of it. Flies down through a 1950s heaven of clouds, down towards the earth, makes a beeline for our house. Salome swoops into our bedroom, where it is dawn, and I am sitting on our bed looking exhausted staring out the open window towards morning sun. Salome darts around me in circles smiling. Clock shows 6.55 am, and Salome puts her face in my face and holds my cheeks gently. She smiles and presses her nose on my nose hongi style and stays there for about 10 secs, camera pivots around us. Then Salome moves my face around to look at the sun, and I wipe the tears off my face

Next shot: me getting breakfast for X and K, who are bickering. Salome darts around the room, helps K throw cereal at X and laughs. Matt walks through room getting ready for work, and Salome chases after him, cuddling him around the back of his neck.

Next shot: me getting dressed in my room, trying to find something that fits. Salome is at my feet putting her chubby feet in on my shoes and wobbling when she stands up.

Next shot: me and K walking X to school, shot from front on. Me looking exhausted and stooping. We walk past camera, to show Salome asleep on my back in a papoose.

Next shot with chorus: me talking briefly to K as she watches playschool, camera follows me walking through our house in usual disarray. I walk to study, sit on bed and get out the gold-painted plaster castings of her foot and hand. Salome sits besides me on the bed. I rub her golden foot, and start to sob. She puts her arm around my neck and puts her check on my mine and stares at the golden foot with me.

Next shot: Salome and I in waiting room with Salome darting around overhead. Counsellor Jane comes to bring us in to her consult room, Salome darts over to Jane and then flies ahead of me into room. Me sitting on couch crying and talking, Jane listening, Salome sitting on Jane's table drawing with some coloured pencils.

Next shot: Me and K at Coles, with K in shopping trolley, with Salome flying around us. We pass anther mum with a young baby. I pull our trolley up short and turn my face away, Salome is buzzing around in the face of the other baby playing games with him and he laughs.

Next shot: I am cooking dinner, with Salome flying around mucking up the spice rack. Matt come home from work and looks as exhausted as me. I move towards him and put my arms around him. Salome is ecstatic to see him, flies to him and is trying to make him laugh by tickling him.

Next shot: We are having dinner, with Salome sitting in a dining chair listening to us talk. Salome hears someone calling her and leaves our dinner table. She flies up back through clouds to my 4 grandparents, who cuddle her and fuss over her and get her dinner. Salome is smearing her food everywhere and my grandparents are laughing.

Next shot: Me giving X and K a bath.

Next shot: back in heaven my grandparents bathing Salome and laughing with her.

Next shot: Night time, me walking away from girls' bedroom, where they are asleep. I get in car and Salome hurtles down from the sky fast and swoops into the front passenger seat as I start the engine.

Next shot: me sitting in a bland room in a circle of about 10 adults, a few blokes, mostly women. Woman sitting next to me is crying and talking and the rest of us are listening, the man sitting on the other side of her takes her hand as she speaks. Pan back to show in the space above our heads Salome and 5 other cherubs are playing chasies and laughing.

Next shot: Me back at home in pjs falling asleep watching TV. Salome looking sleepy, sitting on the arm of the lounge. She stretches her arms and accidentally rolls off lounge. Matt walks over to me and gently gets me up. Camera follow us moving towards bedroom, talking as I get into bed. Salome gets into bed next to me and settles herself on Matt's pillow, yawning.

Next shot: Me finally asleep, Salome besides me patting my hair. She tickles my nose to check I am asleep. When I don't stir she kisses my check, cuddles me around the neck, and then swoops up into the air and back up through the clouds.

Last shot: Salome flies up into the arms of my grandmother, who cuddles her, wraps her, puts her in a cot, and then sits in a rocking chair besides her cot next to my grandfather who is watching a cowboy movie on TV. They are smiling.

OK, got the visual images? Now listen to the song and put the visuals with it.

www.youtube.com/watch?v=2GT4YVxVrw

You can see the real clip of this song here:

www.youtube.com/watch?v=tyg3RtALnwg

It's an Alice in Wonderland rabbit theme. Nicely shot, pleasantly vacuous.

Thursday 15th April: Song lyrics

There is a Robbie Williams song called 'Bodies' that's getting airplay at the moment:

http://www.youtube.com/watch?v=US8cgUq_XBY

It has lyrics in it "Bodies in the Bhodi Tree, Bodies making chemistry, Bodies on my family, Bodies in the way of me, Bodies in the cemetery, and that's the way it's gonna be".

X, K and I went to visit Salome's grave yesterday, and since then X has been singing this song with adapted lyrics, mainly singing that section of the song as 'Bodies in the cemetery, bodies in the cemetery, bodies in the cemetery". If you try singing along with those lyrics you'll see repeating 'Bodies in the cemetery" does work with the rhythm.

I am having a shit week here. Grief like a bulldozer, like the noise of a jet overhead, blocks out everything else. Fucking fucking awful cacophony of feelings, brutal raw sadness, the enormity of the loss contrasted with the smallness of that hole in the ground where Salome lies. I am very sensitive to triggers, such as someone in my face singing about bodies in the cemetery OVER AND OVER AGAIN!

So keen am I to stop this happening that I am teaching X the rest of the lyrics so she doesn't get stuck on that part of the song. That's right: I am teaching my 5 year old daughter to sing 'All we've ever wanted was to look good naked, Hope that someone can take it. God save me rejection from my reflection, I want perfection". If DOCS hears about this I'm done for!

I'm doing a job application for a position in Health that I want to be seconded to. This is not a good week to be attempting a stupid public sector job application, with the 300 words per criteria, and doing research about a clinical area I don't know much about. Oh well, it feels no more pointless than anything else I am doing. I feel exhausted whether I get 8 hours sleep or 4, so I may as well push through tonight and write this application. I'd regret it if I didn't put my hat in the ring for this job. I have tea and chocolate to assist me.

Matt's hit a wall this week as well, and he didn't go in today. I wish his job wasn't so emotionally draining. Now would be a good time for one or both of us to be a mechanic for a living, somthing constructive and lucrative that doesn't involve having to manage other people's distress. We will both be relieved when school holidays are over. X tells me "I want to be where you are and sit on your lap all the time." Will not be persuaded to be in a different room to me for a while. It makes it hard to grieve. If X sees me crying she tells me not to and then tries to make me laugh. She told me yesterday "I don't like it when you cry because then I feel yucky in my tummy and then I want to cry. So stop it." So then I am ducking around the house hiding from X, trying to find 5 mins to have a good cry. But in fact it takes longer than 5 mins. The grief is always there, but to turn around and look it in the face takes time. Time to face it and feel it, and then time to pack it away again and re-engage with everything else.

Last night was particularly hard. Matt isn't bothered by Wedn nights and Saturday mornings, but I am. Last night I was acutely aware of what was transpiring 11 weeks before at that time (7.24 pm birth, resuss commenced, then MET team, then this then that, then 10 pm I got to touch her foot, then prepared for transfer to JHH blah blah blah). Last night shouldn't have been what it was. Last night I should have been tired and pushed for time and the house should have been messy and there should have been nappies around the place and an 11 week old baby crying while we were trying to eat dinner. But no, all was relatively civilised. Where is our Salome? SHE'S STILL FUCKING DEAD!!!!! That she died is one thing to grieve, but now I also grieve that 11 weeks on she is still dead. No logic to it, but as they say 'It is what it is".

As for my faith, I like Robbie's line "Jesus didn't die for you. What are you on?"

Sunday 11th April: New books

I spent Friday night with 2 very good friends who came here to see me. One of the good friends has a big sister who had a 9 year old daughter who died in a car crash a little over a year ago. This big sister of my friend wrote us a beautiful letter and gave us 2 books. One of these books "Now we Are Four" is a collection of poetry by Petrina Barson, a woman from Melbourne whose 3 year old daughter died of septicaemia in 2006. For more about this lovely book and where to purchase, see http://www.cloudsofmagellan.net/Now%20we%20are%20four.html
Here is my current favourite poem from it:

Flemington Road

Flemington Road after dark
has never been so banal
or so appalling.
These walkers and joggers
these pram pushers and tram riders
these drivers and talkers
how can they just carry on.
As if nothing has happened.
As if my darling is not lying
back there
under a patchwork quilt
made by kind but faceless ladies.
And how is it that I place
one foot after the other
in a dogged imitation
of one alive
when my heart is a large rock
tied around my neck
and each step carries me further
from the past - the only place
we can be together.

Author's note: The Royal Children's Hospital is located on Flemington Road, Parkville.

Thursday 8th April: Annoyances

Obviously Salome being dead is the worst part of all this, but let me tell you about some of the minor negatives that go with it. I'd rank them as annoyances rather than greivances.

1. I have gained weight: As a 36 year old woman who had her third child 10 weeks ago, this is not a surprise but it certainly is an annoyance. I gained weight through both other pregnancies, but I found that it came off after 6 months, partly I think due to the breastfeeding. I won't have that working in my favour this time. I am eating more than the average greiving person because I am so glad not to be nauseas, and I don't have the pregnancy/breastfeeding dietary restrictions. As X said the other day "When you had Salome in your tummy you got a big bottom. I can see it." Consequently....
2. My clothes don't fit: Today I put on the jeans I bought for myself after X's birth. These are my comfy slouchy jeans, which sit low on my hips most of the time and need to be held up with a belt. Today I can't have the buttons done up and sit down at the same time. No belt needed! No 'sitting on the hips' look now. More 'jeans aiming to cover my hips, but not making it'. I've got 4 outfits that fit me OK, and a cupboardful of reasonable clothes that may never make it out of the house on my body again. Not really important, but annoying.
3. Autopsy results aren't back yet: We had a call from the lovely NICU specialist Koert recently. He said that at the end of March NICU was receiving results from autopsies conducted in November and December last year, and at this pace it may still be 6 weeks before Salome's autopsy results are back. When they come back we will go to NICU and talk with the team about any new information resulting, and have a NICU debrief about Salome's birth, life and death. Until now I haven't felt ready for this meeting, but I do feel ready for it now. The waiting is starting to shit me off.
4. Admin and funeral tasks: We both want to get the memorial cards done and the tombstone organised, but we also don't want to start the process. At least with the funeral related decisions, the funeral itself gives you a timelimit. I can understand now why people don't send out the memorial cards for over a year after the death. The death of a loved one is all consuming if you don't watch it. Some admin tasks have to be done, and they take up the energy quota. I want to do the memorial cards and the tombstone, and I want to do it well rather than doing it too soon and doing it half-arsed, but I am also getting fed up with all these things that go with having a death in the family. Obviously we will leave it a while before we take any action, but it is still there needing to be done.
5. Life rolls on: This is annoying in it's own way. Bills still need to be paid, the car is playing up, and this morning we blew an electrical circut and now the washing machine won't work. Hasn't anyone told our washing machine and car that our daughter died? We can't be doing with this!

Literature about supporting a person who is grieving usually advises not to drink alcohol with a grieving person or suggest that they drink alcohol. 2 friends of mine broke the rules last week and indulged with me in some deliberate alcohol consumption. I am so glad they did, because getting drunk and having a laugh did me the world of good. I'm not sure my friend's cats liked it, but they never liked me anyway (I'm told that when I am drunk I overestimate my fine motor skills). You can imagine what sort of tolerance for alcohol I've got these days. I've always been an alcohol lightweight and then I went for 12 months without any alcohol at all. Any more than 2 wines breaks me, and I suspect that I exceeded that quota last Friday night because the next day I felt like a 14 year old who'd drunk a case of passion pop and eaten 2 minute noodles at 4 am. It was worth it though.

Wednesday 7th April: Sunset picture

This sunset photo was taken by Salome's Perth-based uncle. I love it.

We survived Easter, and some of it was even enjoyable. In the end, some generous people who we've never met gave us access to their home in the town where Salome is buried, so we spent Sunday night down there with some very good friends. It was a relief to me to not have to manage logistics to visit Salome's grave. In the 20 hours we were there, I made 4 or 5 visits, some as short as 5 mins. That's as close as I'm getting to spending a holiday with all my daughters together. A highlight for me was being at Salome's grave at 6.55 am on Easter Monday. It was beautifully noisy there at the cemetery, with bird noise and the loud sound of the waves, and also people walking past on their way to the beach. I think of Salome at 6.55 am every day, and now I know what's going on at her place when I do and it's a calming image for me.

This morning at Coles I made it down the baby isle without tears or flinching. That's a sign of hope and of recovery.

X came to watch K's swimming lessons today. K enjoyed showing off, and we enjoyed cheering her on.