Monday 17th May: God and me

A friend asked me other day 'How are things with you and God? Still not on speaking terms?" (see eulogy for more info). Well, unfortunately things between God and I have deteriorated a great deal since Salome's funeral, and if I was going to tell you about my relationship with God in parable form I'd say I've filled in the divorce papers. Just can't find anywhere to file the bastard things. Edwina who works in Family Law tells me I have to be separated for 12 months before divorce papers can be filed. We'll see.

I remember talking with someone once who wanted to officially leave the Catholic Church. He said he wished he could sign a form to officially get himself out. I imagine leaving a church could be very difficult but it is possible to walk away, wash your hand of it, pick the thought-tentacles out of your brain when you find them and get on with your life. I think leaving God is much harder. There's a lot of talk in the Bible about 'I will follow you wherever you go, there is nowhere you can go to escape me, blah blah blah'. Not until Salome died did I hear the menace in those quotes. When you've seen the side of God that is treacherous and malevolent, hearing these quotes about 'nowhere to run or hide' is like being threatened by a dangerous ex partner. Is it even possible to end a relationship with God? I don't know but I'm giving it a good Aussie go. Certainly the relationship I had with God before Salome died is over. Whatever relationship I have with the Divine in the future needs to be nothing like what I had. I don't know if I'll be able to engage with Christian symbolism in a healthy way in the future. From my current perspective, the Christian faith pivots on an incident where a father engineers the suffering and violent death of his own child. That event fills me with disgust. Having watched my own beloved child suffer and die there is nothing to worship there for me. I'm not getting down on my knees before that image.

I've had a few conversations with friends about where I am at with this, and God bless those few people who are of staunch enough heart to discuss spirituality with a recently bereaved parent! It takes guts to talk about these things with someone in my situation and i am grateful to anyone who has touched on these issues with me, no matter what they have said. Some have understandably said 'I don't know what to say". That's is fine with me. I don't know what to say either! Please feel free to say nothing. I certainly don't want anyone to feel they have to defend their own faith to me. May I offer some suggestions on what NOT to say to me?

1. Don't tell me to pray my way through it. There are no words for how angry I feel towards God. I don't want any interaction with God, let alone a conciliatory chat with God. There have been other times when I have taken my anger to God and prayed through that anger and it has been helpful. This is not one of those times.


2. Don't try to scare me back into a relationship with God with threats of hellfire. The God I am leaving behind is not a God I would want to spend eternity with. If you feel like praying for me, please do.


3. Don't tell me God knows what it's like to lose a child or Jesus knows what it's like to suffer. There are some key differences between the crucifixion experience and Salome's death. Firstly, from Garden of Gethsemane to death, Jesus suffered about 14 hours. There are plenty of people alive right now who have been tortured for longer than 14 hours and who have more torture ahead. Our Salome suffered for 2 1/2 days. Secondly, Jesus had at least 30 years of life before his death, with friends, family and the occasional feast. Salome had nothing but suffering and then death. Thirdly and most importantly to me, Jesus had a choice in his own suffering. Salome had no choice at any point. As for God knowing what it's like to lose a child, does this mean God has access to our experiences in such an intimate way as to be like feeling them himself (again, note use of male pronoun indicating my current rage at God)? If this is what it means, then God has even less excuse for repeating the same fuck up time and time again all over the world. Anyway, I don't think God would know what it's like for death to mean a permanent seperation from your child. God's always bragging about God can follow us wherever we go, so I don't think God knows what it is like to be seperated from your own child. Or else God has no power to prevent natural occurrences like the death of children, the Haiti disaster etc, but set the world up like a well-oiled watch and stepped back to observe it all unfold (see below).


4. Don't tell me the problem is the last remnants of a child-like belief in God's role on cause and effect. The problem here is not my previous belief in a sort-of interventionist God. The problem here is my baby daughter in a coffin. Also, don't hint to me that my grief will mature my faith to a more abstract watchmaker model of God. I don't agree with Fowler's stuff http://faculty.plts.edu/gpence/html/fowler.htm . Wherever you put yourself on Fowler's neat artificial little stages, I suggest to you that if your child died it would royally mess with your faith.


5. Don't tell me the problem is Christianity: See comments above about my baby daughter in a coffin. Moving from Christianity to another spiritual tradition, whether it be Islam, Paganism, Buddhism, or agnosticism will not fix this. The question of how to go on living a spiritual life in the context of an intimate experience of grief and loss transcends traditions and spiritualities. What tradition has really got theodicy completely tidied up and managed? None that I know of. Right now there is probably some Buddhist bereaved mother in Cambodia being urged by a well-meaning friend to outgrow her Buddhism and embrace Christianty, and I don't imagine that would helping her in her grief either. And while we're at it, I don't want to hear from any mindfulness fundamentalists either. Yes, it's a useful technique, but not every psychological, spiritual and emotional ill can be fixed by teaching a person to eat a grape with their eyes closed.

Here is the action I am taking about this stuff.

1. I am seeking an appointment with my spiritual director, June. She came to Salome's funeral so I don't think she'll be surprised to hear from me. Maybe she'll know where I can file the divorce papers.


2. I'm going to get myself off the roster for taking children's liturgy, because I feel like a fraud when I do it and that bugs me. X and K have their own relationship with God and I really don't want to mess with that either, but I don't want to be taking children's liturgy when I am thinking and feeling like this.

If as a result of Salome's death I end up parting ways with the Christian tradition that will be a huge other loss for me to grieve. But my relationship with God has got me in it, and as a result if I don't speak my mind the relationship is dead in the water anyway. That's what I am like in relationships, and it's not always an admirable thing.

If you are reading this and you really really feel God is telling you to take me to task about some of it, go on then, go ahead, I'm in no position to tell you that's not the case. I will do my best to be civil in my response. Here's a good CS Lewis quote

"Talk to me about the truth of religion and I'll listen gladly. Talk to me about the duty of religion and I'll listen submissively. But don't come talking to me about the consolations of religion or I shall suspect that you don't understand."
- C.S. Lewis, A Grief Observed

On a totally different note I have been introduced to the first Whitney Houston song I have ever liked. It's called 'I Didn't Know My Own Strength' and I am listening to it a lot. There is a line in it "My faith kept me alive". I don't know what the appropriate line would be for me, "A dissection of my faith was a painful but inevitable consequence"? Too many syllables.
http://www.youtube.com/watch?v=4CbEotFOnP0

Wedn 12th May: Current thoughts

I've just returned from a funeral in Leura. I didn't know the deceased very well. I went to support my friend who is his daughter. The funeral itself was fine for me. I think I'd find it much more difficult to attend a wedding at the moment. A funeral means being with people feeling sad, tired and awkward..... I fit right in! The drive however (3 hrs each way) has taken it out of me No regrets though. I am very glad I went.

My current thoughts about the autopsy results: Looking for justice in the outcomes at NICU is like trying to buy a Ferrari at a fruit shop. There's nothing wrong with wanting it. They just don't have it there to give it to you.

Tuesday 11th May: Summary of autopsy results

If you are sqeamish or if reading the details of how our baby died would be too upsetting, it might be best to skip this post.

We met with our GP Andrew last Friday to discuss the autopsy results. As predicted, the autopsy didn't yield much new information, and it's like trying to work out what a jigsaw picture is when don't have the box and you have only 300 pieces of a 750 piece puzzle. Here are the jigsaw pieces we have:

• Salome died of meconium aspiration syndrome, as predicted.
• Jillian the Obst said that at the time of delivery the meconium was really stale, and she said may have been up to 10 days old. The meconium in the waters was definitely not something that happened on the day of delivery.
• There was no information arising from the autopsy as to why Salome would have got distressed up to 10 days before delivery (they told us not to expect any information on this from the autopsy).
• In the 10 days before delivery I attended the delivery suite on 2 other occasions, thinking labour had started. Salome was monitored on both occasions, and neither time did she show any distress. So whatever distressed her enough to do all those poos wasn't something that kept her distressed from then onwards.
• Autopsy confirmed Salome's cord was compressed during delivery ("perinatal asphyxia with MOD"). This happened in the last 10 or 15 mins of the 7 hour labour. Salome has been monitored regularly during the labour and had shown no distress until then, apart from a slight drop in the first 20 mins of monitoring.
• There were no weird genetic conditions that left Salome at risk of this.
• There were no other problems with Salome's body. She was perfectly formed, and not overdue. Estimated weight at birth was 3.7 kgs.
• By the time Salome died, she had substantial brain injuries. These were caused by 3 things. Firstly the perinatal asphyxia (cord getting compressed in the 10 mins before she was born, leading to less oxygen), which alone can lead to some brain injury. Secondly, the inside of her lungs got coated with thick gunky meconium, and so she couldn't absorb enough oxygen after she was born. For her whole 2 1/2 days of life, she wasn't absorbing enough oxygen. Thirdly, whenever someone gets a brain injury, standard practice is to reduce their temperature to between 32 and 34 degrees Celsius for 72 hours after injury. Salome was on cold packs from her time of birth until she deteriorated on the Friday night. Then they said to us "We are getting desperate. We can either save the brain or save the baby and we are going with saving the baby. We need to heat her up to normal temperature and we will do this faster than is safe to do so. This is likely to further injure her brain." Autopsy describes a hypoxic / ischaemic brain injury pattern, with injury to the cortex and both hippocampuses (Ammons horn).
• By the time Salome died her kidneys were stuffed, due to lack of oxygen ("medullary haemorrhagic necrosis').
• At death, Salome's lungs weighed twice as much as they should of, due to being filled with meconium and the inflammation caused by the meconium.
• Summary of autopsy results "This child died of gram negative bacterial pnemonia and diffuse alveolar haemorrhage on a background of infant respitory distress syndrome (hyaline membrane disease); meconium aspiration is confirmed. No structural changes of pulmonary hypertention was seen in pulmonary vessels, probably related to the short duration. Hypoxic / ischaemic brain injury is confirmed. Renal medullary infarction in a manifestation of ischaemia / circulatory failure."

I don't know what to say about all this. It is a relief to know there was nothing wrong with Salome that X or K would need to worry about when their time comes to consider children. It's very painful to be told we will definitely never know why this happened to Salome. Matt says there's no evidence to support my beliefs that it was my fault Salome died. I say there's not much evidence to refute my beliefs either.

I took the autopsy report to the cemetery on mothers day and read it to Salome. It almost feels like an insult to Salome that she died of such mundane causes.

Mothers day was wretched actually. I didn't think it would be as hard as it was. I spent 3 hours alone at Salome's grave and that was the best part of the day. It was gorgeous weather, and I took a picnic blanket and some Thai takeaway and a good book. I'm not the only person who goes to that cemetery with a fold-out chair. There's an old bloke who visits someone buried about 4 rows away, and he brings a wheelie bag and a golf umbrella as well. I think it's his wife buried there, and I think she might have been Pacific Islander. There are a few Islander people and Maori buried there (maybe because it's the only cemetery in the region right on the beach?), and those families know how to get comfortable at a cemetery. They bring their life to the graveside, and set up fold up chairs and bring themos of tea and lunch and stay there for ages. Mothers day was a good day to visit. There were lots of people about, and about $1000 worth of chrysanthemums dotted around.

It was hard to leave the cemetery on Sunday. I hope I never have another mothers day as shitty as that. The next one at least won't be my first mother's day since Salome died, and I won't have got the autopsy results 48 hours before. By this time next year I will not be feeling like this.

Thursday 6?th May: Nervous

Salome's autopsy results are back and we are meeting with our GP tomorrow to discuss them. I am nervous. No matter what the results are, I will find a way to feel guilty about it. I remember having this exchange with Matt about 8 weeks ago:

ME: So much is uncertain, but there is one thing I am certain of. I am 100% sure
that it was my fault Salome died.

MATT: How can you know that when we
don't even know why she died yet?

ME: I'll admit I'm sketchy on the
details, but when the autopsy results come back I'll be able to fill in the
gaps.

One day I'll write something about feeling guilty vs feeling powerless, and how for me it's a toss up which one is worse. A shitty part of this grief experience is facing up to how precarious human life is. Living within that reality of everyday risks is hard, particularly with 2 other daughters busily risking their lives every day doing their thing. I must say though, generally my levels of anxiety about the girl's safety have improved a lot over the last month. It's nowhere near the issue that it was.

Today is a bad day for me. X caught me crying this morning before school, and she has a zero tolerance policy for that, so then she was crying. The weather here is gorgeous, so I am spending time today sitting my bald head in the sun, trying to rest, and being winded by sporadic waves of anger at the universe.

Let's name the elephant in the room shall we? That frigging hideous ordeal ahead on Sunday. I can't even face writing my own mother a card. I can't skip mothers day because X and K are already excited about what they have made / bought for me. I have to do the first hour of receiving gifts, for X and K's sake, but maybe I'll spend the rest of the day playing Nick Cave and eating comfort foods and avoiding people.

Tuesday 4th May: Velcro Head

This photo was taken by my friend on Sunday morning when we went to beach to watch the sunrise for International Babylost Mother's Day. It was a beautiful way to spend the morning, and kind of peaceful.

My hair has already noticably grown in the 48 hours since it was cut. Now it's like my head is covered in velcro. I can get my pork pie hat onto my head, but getting it off feels weird.

I wore a beanie when I went for a beach walk at 6 am today, but it was too warm and I had the beanie off in 5 mins.

My fundraising has now gone over $1000. I am blown away. Thank you all!!!

Since I shaved my head I am smiling more. I think I've done my Salome proud.

Shave in process

Monday 3rd May: Please sponsor me

As I write I am feeling a little breezy around the ears, because yesterday I shaved my head for the first time ever. This has been something I have been thinking of for a week or so, before deciding to do it after I talked to Counsellor Jane about it last Thursday. Let me try to explain why I did it.

Firstly, I did this as a mourning ritual. Cutting and shaving hair has been a tradition of mourning for lots of cultures for a long time, particularly for women.

http://jhom.com/topics/hair/mourning.html

Some cultures prescribe exactly when and how hair should be cut after the death of a loved one (for example some Central Australian kinship groups). Other cultures expressly forbid the cutting of hair after the death of a loved one. Other cultures require specific self-harm practices to show respect to the deceased, and to remind people that a person is in mourning (particularly for cultures where they are prohibitions against using words to communicate that someone has died and who that is).

The last 3 weeks have been really shit for me, and now I feel something is shifting in me for better or for worse. Our culture doesn't offer me prescribed ways to be allocated the role of 'griever'. I an not encouraged to wear black clothes, and I wouldn't anyway because that's not me. Not that I want to romanticise the mourning rituals of other cultures or write-off how we do grieving in our culture. I like it that in our culture it is generally not taboo to talk about grief or how someone died, and people are not pressured into grieving in a certain way. For example Judaism has some wonderful rich traditions of mourning that recognise different stages of grief, in which the community is required to support mourners not just immediately after the person dies but for some time after woulds. But if I was an Orthodox Jew, I might be discouraged from publicly mourning Salome at all, because although there are rigorous mourning rituals requiring the community to attend (such as sitting shivah), these mourning rites are not extended to a person who dies before they reached 30 days old.

http://www.chabad.org/library/article_cdo/aid/291135/jewish/The-Basics.htm

If was an Orthodox Jew I might also be required not to listen to music for 30 days after Salome's death (or for 1 year following the death of a parent!), and to not cut my hair until I was rebuked by someone else to do so. So I think if I was required to adopt orthodox Jewish traditions, I would go as mad as a cut snake. Maybe it is part of our culture to respect and sometimes appropriate other culture's mourning rituals and incorporate them if we think it's useful, just like me do with other culture's wedding practices etc. I think the reality is that the most common grieving ritual people in my situation in Australia take part in (apart from the funeral) is to get a tattoo. I remember a staff member from SIDS and Kids commenting that their client group "gets more tattoos than a bikey gang". Matt and I may get a tattoo at some point but now is not the time. I remember seeing on a website a photo of a young Babylost Mamma who within a few weeks of her son's death had tattooed a big teardrop on her cheek. I don't want to have this sadness tattooed onto me. When the time is right we might get a tattoo that reflects our gratitude for Salome's life and our joy at having her in our family for as long as we had her, rather than permanently attaching a reminder of this heartache and loss on our bodies.

The meaning for me of shaving my head as a grieving ritual are:

1. As a way to communicate to others that I am grieving. I think over the last few weeks, I have becoming more aware that people around me are 'moving on' and Matt and I are becoming more alone in our grief. This is exactly how it should be: Salome was our daughter to grieve, and there is no advantage to us if other people prolong their distress about our daughter dying. This is what I would hope for all of you: that Salome's death causes less and less sadness at time goes on, and that the rest of your lives (happiness + busyness + everyday frustrations) takes over. We are surrounded by so much love, and we have a lot of support. However, I feel increasingly isolated in my grief, not that no-one cares, but that the reality is that it is my grief to do, my road to walk. With that comes the feeling that I am at fault for not keeping up with the natural recovery of the world. For me the world got ripped open the day Salome died. So much pain was caused, not just to us. The world is healing, but I am not healing as fast as the rest of you, and sometimes when I lose perspective I blame myself for not recovering fast enough, and for still feeling so dreadfully sad, so angry, and so cheated. I know other people don't expect me to heal faster. This is all shit in my head that makes trouble if I don't manage it. My shaved head is a reminder to me that I am grieving, and maybe a reminder to others too. What do I want others to know when they look at my shaved head?

*That I have recently suffered a substantial loss and i am in a transitional state between bereft and "doing OK".

*That my smiles and happiness when you see me are real, but so are my tears when you don't see.

*That I want my grief to be respected. I am confident in my capacity to survive this loss and to grow from it, and I want others to have the same confidence in me, rather than hedging me towards steps of 'recovery' that meet other people's timetable.

*That I am currently not able to fulfill social obligations that I otherwise would. My capacity to do stuff and be around people changes from day to day and it's impossible to predict. I would rather not volunteer to do stuff than to risk letting people down.

2. As way to remind myself that things are changing: It will be really good for me to watch my hair grow back. I won't stay bald for long. The world will turn, the weather will grow colder, the seeds I planted last week will become seedlings, and soon itchy scratchy fuzz will grow on my head. My grief will change over time too. I won't always be feeling like this. There will come a day when I can watch the little 1 min video footage we have of Salome as she was prepared for transfer from birthing suite to NICU. One day I'll see photos of friend's new babies and I won't flinch or cry. I don't need to make my grief go away any more than I need to make my hair grow back: these things will just happen and all I need to do is ensure I don't impede the process. Grieving is as organic as growing my hair.

3. As a way to reflect that I am different now: My experience of birthing and then losing Salome has changed me, and not all these changes are bad. I suspect that after surviving this, I will have a capacity for staunchness that I didn't have before. I don't know how I will be different yet, and it will take some time for the dust to settle and then some parts of my life and relationships may need to be reconfigured. My shaved head says 'Watch this space, major work in process'.


Secondly, I shaved my head to raise money for Leukemia Foundation, through the Be Brave and Shave campaign. I initially registered myself with Be Brave and Shave because I thought it would be a great cover story for when people ask me why I shaved my head and I don't want to tell them the whole story. However, I am thrilled to have raised over $900!!! It's not too late to sponsor me by going to

http://my.leukaemiafoundation.org.au/personalPage.aspx?SID=12317

THANKYOU!

Thirdly, I shaved my head because deep down in my psyche something told me that if woman is feeling truly desolate and mournful and it's getting colder, what she should do is shave your head and stomp about in public gardens in a big black coat. I wonder where that comes from....

http://www.youtube.com/watch?v=iUiTQvT0W_0

My brother shaved his head back at Uni, and his concludion was that Mother Nature gives us Wooldridges a thick lifelong head of hair because our skulls are so ugly that our genetic line would cease if we showed ourselves without hair. I am relieved to report that while I don't look sexy, I don't look hideous either. VEEEEEEERY relieved!

I am glad I shaved my head. It has helped. Now I need to go buy some hats. Thank you again to those who have sponsored me. I am delighted.