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 : (