Good Grief: Insight on SBS

Leslie and I both like to watch Insight on SBS and on 17th April they featured a very timely discussion on grief and how we deal with it. You can watch it online or read the transcript. I really recommend that you do. Not only might it help you understand what we are both going through at the moment (quite a few of the participants had experienced the death of a child) but it will also be a really valuable way to open a discussion amongst your own families and friends about why our culture finds it so difficult to grieve, and how societal attitudes towards it impact upon you when you are in grief's throws.

Specifically, the premise for this show came out of a debate currently being had by the American Psychiatric Association about whether 'complicated' or 'prolonged' grief - in other words an 'abnormal' response to bereavement - should be included as a psychiatric disorder in the newest edition of the Diagnostic and Statistical Manual of Mental Disorders. The DSM is the foremost resource used by clinicians throughout the world that sets out psychiatric diagnostic categories and criteria and treatment guidelines.

On the one hand, clinical attention to prolonged grief responses gives people who are suffering in a way that goes beyond the 'ordinary' pangs of longing for a lost loved one the potential for relief that will enable them to again participate in daily life. Though grief is very different to depression, it is known that depression can occur alongside or ensuant to, but at the same time quite separate to, a grief response. 

On the other, to attempt to pathologise grief and to set limits around what is considered 'normal' grief, has the potential to be problematic for people whose experiences fall outside of those proscribed limits. My own experience has shown me that grief has many and varied faces; that there are as many ways to grieve as there are to love.

The participants on the show were deeply ambivalent about whether the inclusion of a bereavement disorder in the DSM was a good thing. By far the majority of those who spoke were very critical of the proposal and rejected the idea that their grief - which many of them considered would last their entire lives - was an affliction that needed to be taken away.

I could relate to that point. I feel, for example, that the grief I have for Max is an expression of my love for him. To be expected to ever get over his death is an attitude that I find distressing and repellant, for I will never stop grieving for him, although the manner in which I grieve may change over time.

I cried during the show as the participants described the impact that the loss of a loved one has had on their lives. Their anguish was hard to watch.

There was the man whose adolescent son committed suicide after prolonged bullying. He desperately clings to his son's memory, to the extent that he keeps his bedroom exactly as it was the day he last saw him.

There was the couple whose three-year-old daughter died in an accident, both of whom expressed the sentiments I mentioned when they spoke of their grief for their daughter representing their love for her.

Then there was a woman whose attitude I found much harder to take. Her nine-year-old daughter died as the result of a tragic train accident. She spoke of how she did not even consider letting herself experience grief for her daughter; that she was able to accept her death as immediately as it happened because she believed in destiny and that her daughter had obviously been meant to die.

This woman was able to intellectualise her feelings in a way that I, and many of the other grieving participants, could not comprehend. She spoke of deciding to not be sad because that is not what her daughter would have wanted. I was watching her and thinking 'if only it were that easy!'

I understood she is at the point where she feels that there are positive things she can do in her daughter's memory that are much more productive than shutting yourself away to scream and cry. I have moments of this myself, despite my overwhelming sadness. However my own experience of grief is so different that I could not understand how she was able to equate her conscious positive re-framing of the grief experience with the very unconscious, unpredictable nature of feelings and emotions. I wondered if this was evidence of a different kind of coping mechanism that externalises and pushes away the pain as opposed to nurturing it and holding it close, as I and many others seem to be doing.

I don't know the answer to that, as I don't know this woman, and I don't know what it is like to have had her experience and to hold her beliefs. But her inclusion on the show really highlighted the fact that it's impossible for us to understand or comprehend another's grief, as much as we might think we can relate or empathise with it. For that reason, as a society, we must not be so quick to judge the ways in which it is acceptable for others to grieve.

The case of Lindy Chamberlain back in the eighties is a case in point about how women, especially, can face extreme consequences for not expressing emotion in expected ways. In that case, the Australian public deemed that Chamberlain had not grieved visibly enough. As Doka and Martin explain in Grieving Beyond Gender: Understanding the Ways Men and Women Mourn, Chamberlain's failure to grieve in a prescribed manner was interpreted as strong evidence of her guilt. She had not grieved for her murdered daughter visibly enough.

An article in The Age on 12th February last year summed it up by neatly by saying (in relation to Julia Gillard's emotive response in parliament to the Queensland floods) "Women damned if they show emotion, damned if they don't".

"Humans are hard-wired to evaluate, assess and judge others, it's part of our survival mechanism. But perhaps we could step back a little and remember that people are different and that their abilities and ways of dealing with emotions vary, too," Gabriella Coslovich writes.

I couldn't agree more.

Premature Birth: The Fight for Survival

I follow the Miracle Babies Foundation on Twitter, and just now they posted a link to an article in Britain's The Telegraph on premature babies' fight for survival. I cried reading it. It didn't tell me anything I didn't already know, except that my baby was so close to be able to have something done for him, to have had the chance to live. Every time I think of this it breaks my heart all over again.

I encourage you to read it here:

http://www.telegraph.co.uk/lifestyle/9223923/Premature-birth-the-fight-for-survival.html

A painful number

I had to work for most of the past weekend. I've been really enjoying my job again lately, so in itself this wasn't going to be a big deal. On Saturday night, though, I worked with one of my colleagues who is pregnant. I've mentioned her before in terms of an awkward conversation we had when no one told her I'd also recently had a baby.

I've been trying very hard to show interest in other people's pregnancies, usually as a way of staving off the awkwardness of not mentioning the elephant in the room, so to speak. As I currently know a lot of pregnant people, this results in me talking to people about their pregnancies a lot, which is hard because I have to be constantly reminded that so many other people are in the enviable position of assuming they get a baby at the end of their 40-week pregnancy and are able to excitedly plan for it. I can't begrudge them this innocence, as I, too, had it not so many months ago. I wouldn't wish them to have the carpet pulled from underneath them like I did, but I also wish I didn't have to constantly re-live the tragedy of my pregnancy in comparison.

At any rate, I was making polite conversation and genuinely making an effort to let her talk about her excitement. Amongst chat of her finding out the baby was a girl, her house renovations and decoration plans, she casually mentioned that she was 23 weeks pregnant now. That part of the conversation hit me like a brick and upon hearing it tears sprung instantly to my eyes before I even had a chance to consider my reaction.

23 weeks. 

That's as pregnant as I ever was, as I ever might be.

Max's beautiful 23-week feet. They couldn't be any more perfectly formed.

To this girl, it feels like there is still such a long way to go. The terms 23 weeks; the 'threshold of viability'; neonatologist; survival rates; significant disability; neonatal death, mean nothing especial to her. But just hearing the phrase was enough to take me right back there, to the day I found out what the significance of that gestation really was. 

She either did not notice my reaction, or she very politely ignored it, but it stayed with me the entire night, and has done pretty much every moment since then. Every chance I had I couldn't stop staring at her tummy. She'd only just begun to look pregnant. When Max was born, so had I. All I could think about was that I knew exactly what her baby looked like. As she sat casually reading a magazine her body was doing important work in preparing her baby's major organs for life outside the womb. When I see her again in a fortnight, her baby will have already passed the point that Max never got to reach, where the odds of survival if anything went wrong became pretty good.

I said nothing to her of my thoughts. I did not remind her that when I was 23 weeks pregnant my baby was born. But I did tell her one thing. I said 'you should take some photos of how lovely you look right now. Take some photos of your tummy. You might feel silly doing it, but you'll never regret having them'. And I left it at that. 

I don't have a single photo from the time I was pregnant. Not even a casual one. It's one of the things I regret most now that I have little to show for the fact that this momentous thing happened to me. I have no stretch-marks, no stitches, no baby to prove it. I had been so sick and so miserable for most of that time that documenting the process seemed like the last thing on my mind, even though I'd started out with the good intentions of doing so in a journal.

Perhaps my prolific posting on this blog is my way of ameliorating that regret. I now have a constant desire to document my journey, and Max's story. I've never before stuck with any 'project' as diligently as I have this blog. Sadly, I feel it's one of my greatest achievements to almost-daily check in here and make something of my experiences. It's as if I'm desperate to make up the lost ground.

I've been thinking a lot lately of what the purpose of this blog actually is. Since I felt the need to make it private as a way of protecting myself from the judgement of people who might either wilfully misread me, or tragically misunderstand me, it's something that's been on my mind. Why am I writing? Who am I writing for? 

Amber and it's special symbolism

For months now I've been looking for a special piece of jewellery to act as a keepsake for Max. To start with, I thought I wanted a locket in which I could place a couple of photos and a portion of his cremation ashes (there are people that will do this for you and seal them underneath a photo). I couldn't seem to find the right locket, though. I looked at antique Victorian lockets and some new white gold lockets, and found a few I really liked, but nothing seemed special or meaningful enough. I just couldn't decide, so I made no decision at all, even though I really, really would like to have something.

Then, recently, I started thinking about the idea of having a precious stone or crystal set in a sterling silver pendant, after I came across the website of a lovely lady who creates different kinds of memorial jewellery, particularly for people whose babies have died. I began doing some research into the symbolism of various stones, and looking at natural stone jewellery on the internet. I was repeatedly drawn to amber pendants, and I discovered amber had a special significance in representing grief, love, and motherhood.

Amber's value and symbolism goes back to ancient times, and it is associated with many myths from the Assyrian, Egyptian, Etruscan, Phoenician and Greek ancient cultures. The one that really struck me was a Greek one:

Phaethon, a son of Helios, the Greek God of the sun, convinced his father to allow him to drive his chariot of the sun through the heavens for a day, but in doing so, he came too close to the earth, scorching it. To save the earth, Zeus, the God of thunder and the sky, struck Phaethon with a thunderbolt and he died, plunging out of the sky. Phaethon's mother and sisters were frantic that they could not do anything to save their son and brother. In their grief, legend has it that they found themselves turned into trees, and ever after they wept tears, which, when dried by the sun, made amber.

The Roman poet, Ovid, tells the story in Metamorphoses:

And all the daughters of the Sun went there
giving their tears, alas a useless gift;--
they wept and beat their breasts, and day and night
called, "Phaethon," who heard not any sound
of their complaint:--and there they lay foredone,
all scattered round the tomb.

The silent moon
had four times joined her horns and filled her disk,
while they, according to an ancient rite,
made lamentation. Prone upon the ground,
the eldest, Phaethusa, would arise
from there, but found her feet were growing stiff;
and uttered moan. Lampetia wished to aid
her sister but was hindered by new roots;
a third when she would tear her hair, plucked forth
but leaves: another wailed to find her legs
were fastened in a tree; another moaned
to find her arms to branches had been changed.

And while they wondered, bark enclosed their thighs,
and covered their smooth bellies, and their breasts,
and shoulders and their hands, but left untouched
their lips that called upon their mother's name.

What can she do for them? Hither she runs
and thither runs, wherever frenzy leads.
She kisses them, alas, while yet she may!
But not content with this, she tried to hale
their bodies from the trees; and she would tear
the tender branches with her hands, but lo!
The blood oozed out as from a bleeding wound;
and as she wounded them they shrieked aloud,
"Spare me! O mother spare me; in the tree
my flesh is torn! farewell! farewell! farewell!"
And as they spoke the bark enclosed their lips.

Their tears flow forth, and from the new-formed boughs
amber distils and slowly hardens in the sun.

The idea of amber symbolising a mother's tears was a really meaningful one for me. Amber is also significant to my understanding of Max's story because it is formed in nature from fossilised tree resin, or sap. Amber has been said to be like a time capsule made by the earth because during this fossilisation  insects and leaves and other natural material becomes embedded in it, preserving a moment in time. In fact, hundreds of now-extinct insects have been identified using DNA found in amber. My deepest with, when I remember Max, is to preserve the moment in time we had together, and for this reason, wearing an amber pendant in his memory seems to so perfectly encapsulate all of my feelings. 

I am having trouble deciding on the type of setting I like, and also finding someone, like a silversmith, who can produce something unique for me. Here are some pictures I've pulled from Mr Google of settings I like. What do you think?

Happy Friday

Today has been a really happy, positive day. It's one of those days when I'm tempted to believe that everything I've been through over the last five months has been a bad dream. Instead, I acknowledge that I'm on the upward slope of a mountain on which just a week ago I had experienced a very painful, rapid tumble. There's still so far to go, but today I've found a safe spot - a little quiet ledge - on which to stop and take a rest. When you've been climbing the biggest hill you've ever seen, and you finally get a chance to stop, the sheer relief you feel in your every muscle has to be amongst some of the best feelings in the world. For this reason, since I had Max, I feel like I've been capable of experiencing greater happiness and contentment as well as greater sorrow. These moments of relief have been so rare that when they come around I seem to want to grab them with both hands and treasure them as if they'll never come again. Because these days I can't be sure that they will. Nothing is certain anymore except that everything is uncertain. It's a simultaneously frightening, but liberating way to live. In accepting the uncertainty I must give up my illusions of control, which is scary. But in giving up my illusions of control I get to stop feeling like every tiny decision I make has the means to make or break me - something that has long been a source of anxiety to me. It takes the pressure of, I guess, in many ways.

I daresay the weather has helped this shift in my mood. It's been a sunny, fresh, beautiful Autumn day after a bunch of really grim, grey, rainy ones. I also had lunch with a really good friend of mine who is visiting Melbourne from the Gold Coast for a wedding. In keeping with the theme of most people I know at the moment, she is also pregnant, and due in October. She was looking remarkably bright and healthy compared to how pale and sickly I looked when I was pregnant with Max. Perhaps that's what life in the sunshine state does to you - highlights your inner glow. Or perhaps this is what happiness looks like, and I've just forgotten. Then again, perhaps she just went to great effort with her make-up this morning. Sometimes it's just as simple as that.

Denise is such a vivacious person, and the best thing about having her in my life is that she always brings me outside of myself, though with a real sensitivity for, and recognition of, what's going on inside. She's an extrovert with a distinct 'feeling' side and our friendship has survived many years because we seem to just 'get' each other in an emotional sense, even if we disagree with each other's opinions. Even if it has been months or weeks since we've spoken, we hear each other's voices and it's just like old times again. We've always benefited from intense 'deep and meaningfuls with each other, and neither of us are afraid to admit our weaknesses or mistakes, or to give each other some 'tough love' when the situation requires. We have been through so much together; we've seen each other at our worst and yet we're still each other's biggest fans. That is love!

Denise is always there for me when it counts. When Max died she flew to Melbourne for the funeral, just for the day, just to show me how much she cared. I will never forget that. I will never ever take for granted again her generosity of spirit and feeling, and I hope I will be able to offer her the same kind of support and kindness in the future, should she need it.

It was really lovely to see her and her (relatively) new husband I've only met once before - at the wedding! I have no doubt they are going to make fantastic parents and I have my fingers crossed that all goes well for them over the coming months. We had lunch at my favourite city cafe, Journal. We laughed a lot. It was everything I needed.

Earlier in the day I'd shared breakfast with an ex-student of mine, with whom I'd shared a special connection some years ago. We keep in touch and every few months go out for coffee. She has almost finished her undergraduate degree now and has grown into such a fantastic, interesting, warm and funny young woman. I feel privileged to be able to keep in touch with her and share her life, and sometimes live vicariously through it!

Being Friday, it was also time for my weekly 're-calibrating' with my psychiatrist, who has really become much more of a teacher and mentor than a doctor to me. I was in quite a different state than I was when I saw her last week and collapsed in heaving sobs on her couch the minute she looked at me. We talked about all sorts of things today, especially about how dismally I handle conflict, and perceived conflict, such as what happened recently in the friendship fallout from my MamaMia article, which has caused me significant and ongoing stress. We talked about the different ways people react to the things that happen in their lives, including their relationships with others, from the perspective of their own 'schema'.

Schemas are the powerful enduring patterns that we develop from childhood that encapsulate our beliefs and feelings about ourselves and our environments - the things we accept without question, and that we are sometimes not even aware of except when they erupt into consciousness triggered by a particular event. A 'healthy adult' - which is the aim of this, and any kind of therapy - operates with elements of each identified schema at play. But often, we have a maladaptive way of coping with our schemas, which causes us to respond to people and events in problematic ways.

I've only just been introduced to these schemas, and only have a limited understanding of how this way of looking at people, and their actions and behaviours in the world, works so far. The way Melanie described it to me, though, made so much sense to me. I really got a lot out of our discussions. I could immediately identify my own dominant 'punitive parent*' and 'vulnerable child'** schemas, which I've worked on excessively through other modes of therapy over the years, but which still often surface when I am tired or faced with a stressful or negative event and revert to long-established patterns of emotional response. The goal of mindfulness, in conjunction with these understandings, is to be able to consciously observe when you fall into these patterns, and to be able to self-correct in the moment, something I'm getting so much better at, but which takes a lifetime of practice.

I found a good example of the schemas which are identified during the process of this therapy here.

Anyway, this discussion proved immeasurably helpful in my understanding of why I've been so affected, and also to understand the reactions of my friend. I'm sure I'll be thinking this schema stuff a lot over the coming weeks.

And, finally, Friday wouldn't be a happy Friday at all without my weekly night-time treat watching Miss Fisher's Murder Mysteries. I honestly don't know what I'm going to do when the series finishes - it is one of the absolute highlights of my week! I've long been a fan of the books, and an occasional stalker of their author, Kerry Greenwood. It's one of my only fantasy indulgences to imagine that I am the illustrious Phryne Fisher and television series is so well done that it is a real treat to watch.

Then, it's always nice to go to bed on a Friday night knowing that I get to have breakfast with my Kate the next morning. That's one of the best feelings ever. I never cease to be excited to see her. We are like puppies that meet at the park!

Five months

My dear Maxie,

Five months have passed without you, and I don't know where they've gone. Five months is the length of time I had you with me. It seems like such a long time since I held you, but on the other hand the days have passed in quick succession with little to differentiate one from the next. Your mummy does not feel like her life has much meaning without you. On good days I try to think of some things I'd like to do, things that will make me feel like me again, but I can't seem to muster the enthusiasm to follow them through. I say to myself 'but what does it matter? That thing is meaningless. What is the point in striving to achieve anything when it can all be taken away in an instant'? And that's what I think on a good day!

Your room is still here for you, just as it was. It's so empty and cold, though. Sebastian, your new little kitten, likes to play in there though. He likes to chase drinking straws around and chase his own tail and he loves that there's lots of space in there for him to run about. He is giving mummy and daddy so much love and we wish you could be here so he could lick your little face as well as ours. I think he would have been a great companion to you, and of course Peppy misses you too. He was going to take advantage of all the time I would spend on the couch feeding you and putting you to sleep.

I still cry for you, in heaving sobs. They come from so deep a place that my whole body seems to drown under their weight when they come. Sometimes I feel them there under the surface all the time, and I have to fight to keep them back. Other times, like last night, they come out of nowhere while I'm watching TV and your poor daddy is left wondering what on earth happened. We were watching my favourite show last night, 30 Rock, and Liz Lemon and her boyfriend decide they'd both like to adopt a baby. It's supposed to be a comedy, and it was far from an emotional moment on the show, but all of a sudden I started crying when I remembered how excited I was when we first decided we wanted to bring a baby into the world.

I wish more people talked to me about you. The truth is, the times when your name is mentioned to me are few and far between. I guess it is hard, as no one really knew anything about you, so what can they say? It's not like they can say 'Max would have liked this' or 'Max would have done that'. You were imaginary to most of the world, except your mummy, daddy and Aunty Kate who all were blessed to know how very real you were.

Your daddy and I would dearly love to have another baby - a brother or sister for you - but we are so scared. We don't want you to think that we could ever replace you, and we are worried that everyone will think we are 'over' you, or 'better' because we dare to hope. I am so sensitive to other people's reactions to you, and to me. I know it doesn't matter what others think, as you and I know the truth that you will be forever my son, and always with me, but it pains me nonetheless to think they can have an opinion on something they know nothing about. In many ways, I dread the excitement that would accompany news of another baby as I would feel it was offensive to you and your memory. But at the same time I want to be able to feel excited, to feel hopeful. Deep down I believe that is what you would want me to do, and that you would want me to share the deep love I have for you with another little baby who needs it too.

Mostly I am scared that I will not be able to keep a new baby safe, as I was not able to protect you from a fate you did not deserve or expect. I know it was not my fault that you died - that I would have done anything to make it stop - but I still carry so much guilt and regret. I don't trust my body to do the right thing. I don't trust myself to know when something is wrong and to act upon it. I don't think I trust that I deserve to be a mother.

But lots of people have told me I am a good mummy to you. I try so hard to do things for you even though you are not here. Did you know that your mum and dad, and their friends and family, raised $5000 for the doctors at the hospital where you were born so they can help babies like you? You don't know much about money, I know, but $5000 is five times the amount we had expected to raise. We feel so proud we can do something in your name that would make a difference to the world that you were a part of, if only for a short time.

Your mum has also been talking to lots of other mummies whose babies have died. It has been so helpful to know that they understand what we are going through. And it seems like most of them understand how we feel. I write on this blog, and in other places, about how I feel all the time. The other mummies have told me that I am able to express all of their pain and feelings and fears in ways they sometimes cannot. It is scary to open yourself up and tell the world your innermost thoughts and feelings, but I hope you are proud of me for taking that risk so that other people might better understand what it is like when a perfect little boy like you dies for no good reason.

There's no good reason why you are not here with me, darling. I wish there were. Though what would be a 'good' reason for your death? I guess there is no such thing.

Though I still wonder where you are, and about what it means to die, the quest for the answer is not causing me as much distress as it did a few months ago when I was turning every which way trying to find someone who could tell me the definitive 'truth' or the matter.  I guess I've come to terms with the fact that there are things I will never understand, although I secretly hate this so much. I wish you could just come to me and tell me somehow all the secrets of the universe. But I know you don't have any more control over where you went than I do over the fact I had to let you go. Most days I settle for the realisation that you are all around me, in everything I do and every thought I have. Your essence is within me, not in an imaginary heaven. I can't think of a more fitting place for you to rest except in your mummy's every thought, feeling and breath.

I miss you so much my precious baby. I just miss you so very much.

I love you forever.

Your mummy xox

PS. Here is a picture of you and me. It is so precious to me to see you in my arms.

Things-I-Love-Thursday: La langue française

Is it truly Thursday again already? Here it is time to think about something else I love that makes me happy again. Finding things to be happy about when you feel you don't really have all that much to be happy about is quite hard work. Then again, I guess that's entirely the point. Its extra important to think of the things that make you happy when you're not happy so that you are reassured there's more to your life than your current state of feelings. I find it very hard to see outside my feelings; to be the conscious observer of them instead of being swallowed by them, despite my now many years of mindfulness practice. Here, in this post, is another opportunity for me to tell myself my life is bigger than how I feel today. So here goes.

One thing I really love in the world in the French language. Actually, I am true francophile and love anything and everything gallic, but I'll limit myself to gushing about la langue today. I don't know when my passion for it began, but I've always had an interest in and affinity for language. As I didn't have the opportunity to learn a second language at school (my school offered Italian in years 7 and 8 but unfortunately nothing beyond that) and always regretted that, I began learning French as an adult a few years back, first at the CAE and later at the Alliance Francaise de Melbourne.

I began studying a little while after I started my PhD. I was a resident tutor at one of the university colleges at the time and the Dean of the college and I signed up for night classes together. We used to walk down into the city on a Tuesday evening and we'd practice our rudimentary attempts to get basic information out of each other - question and answer style. Where do you live? How old are you? Basic, introductory French.

Of course, my aim was to relocate to France where I would live out my life as a chic Parisian. I know this makes me sound like an ungrateful Australian, but I've always wished I was from somewhere other than here. Most of my fantasies in life revolve around me not only being taller, but being European and multilingual, too. French, Danish, English, Finnish - I've wished myself a variety of nationalities over the years, and I daresay would have settled for any of them at any given point! It's not just that I think it would be great to have an EU passport so I could travel and work freely wherever my heart desired (although I am envious of anyone who has access to same), but I'm truly fascinated by the experience of the other - what it feels like to call a different place home, and particularly what it is like to grow up multilingual, as most Europeans are.

You see, I desperately wish I was much better at speaking French (or any foreign language) than I am. I really believe in the cognitive benefits of language learning and I have this desperate curiosity to know what it is like to think, and really express yourself, in another language.  However, though I've been interested in learning French for many years, I don't always stick with the courses, and great swathes of time elapses between me enrolling in one, and then the next. Partly this is simply because the effort to go to the absolute other side of town for class of an evening is something of a drag. But partly it's because I'm so stupidly easily frustrated by how long it takes to progress. Though I'm probably about intermediate level in my reading, writing and speaking, my listening skills, for example, are still really poor, and it's hard to develop those when you are not immersed in the language. Two hours a week, and a little bit of homework in between, doesn't really seem to get me very far.

Last year, however, I was really fortunate to spend two weeks in Nice studying French by immersion. It was a once-in-a-lifetime opportunity for me and though it was very hard, by the end of the fortnight I really felt like I was just starting to improve. I was able to understand much of what was said in class, and I successfully negotiated our entire stay by speaking French, to which the locals in Nice and its surrounds were very receptive. It was truly such a thrilling feeling. I can't quite think of anything else that's able to give me the real spark I experienced in realising I understood, and could be understood, using a language that I'd only fairly recently acquired. The two weeks in Nice were two of the best weeks of my life, but it also brought home to me how much I wanted to stay, and how the only chance I really had of ever becoming fluent was to live for an extended period of time in a French-speaking country, which I knew was unlikely to happen.

Curiously, I have not been back to class since then, and have probably lost much of the advantage I gained during that time. Why? Well, I don't know, but I suspect it has something to do with my silly brain saying to me 'what's the point in learning this if you will never be fluent; if you will never be perfect'. I'm well aware this is a really unhelpful way to think, and in fact prevents me from experiencing the enjoyment of learning along the way. I'm also aware of the irony that by attending even some classes I'd be much further along the way to becoming fluent than I am sitting at home just thinking about it!

So, what do I love about the French language? Let me count the things. Well, I'll count five things otherwise I'll be here all day. I love:

• that the French are so unashamedly pedantic about protecting the quality of their language. They don't take kindly to foreigners' attempts to butcher it, nor attempts to change or question it. They even have an advisory body whose aim is to act as the authority on the usages, vocabulary, and grammar of the French language - L'Académie française. I love that they take the protection of their language so seriously! I really love it!

• listening to people speak French, and hope to obtain some of their je ne sais quois by aspiring to speak like them. I am the sort of person who loves listening to people read me or tell me stories - I love the sounds of language, and I find the sounds of French very alluring. I could listen to French chanteurs (singers) for hours, and happily watch French movies even if I had no hope of following the story line. It makes my ears happy, and ears don't often get the chance to experience true happiness these days, don't you think?

• how the French have an exception to every rule. There are regular verbs and irregular verbs, and exceptions to regular verbs and irregular verbs. Although this means that there is a whole list of verbs you need to memorise by rote as they don't ascribe to the rules of other verb groups, I just love that French doesn't care how difficult or annoying it is to learn. I'm sure that new learners of English would say the same thing about the many nuances of our language, but as our first language, we don't notice or have an awareness of how we form language, we just do it. Learning French enables me to really question things about language structures, patterns of acquisition, and grammar. In fact, I've learned more about English grammar by studying French than I ever did by studying English my entire life. 

• that the French make wonderfully quirky films that really resonate with me, and it's a real thrill to be able to watch them without being so reliant on the subtitles. It makes going to the French Film Festival infinitely more enjoyable and satisfying.

• that when I'm speaking it, or surrounded by people who are speaking it, I get to feel like I'm someone else for a while - I get to live my fantasy of being French, however misguided a fantasy it is!

Here is one of my favourite YouTube videos of all time. Tell me you don't want to have French-speaking babies too after watching this!

My (unsolicited) views on vaccination

Anyone who knows me well will know my very strong views on vaccination. 

I don't believe vaccination should be compulsory or state-mandated. I value personal choice and I think people should be left alone to live their lives how they see fit for the most part. However when people make choices that are known to have a negative affect on the health and wellbeing of others around them, I find my beliefs are balancing on much less solid ground.

So, when I read of an increasing number of parents refuse to vaccinate their children, I find myself feeling very uncomfortable indeed. I believe in their right to conscientiously object to vaccination in a general sense, however I also believe every parent who is able to do so has the moral obligation to vaccinate their children, not only to protect their own children's lives, but the lives of others around them who are too young or too sick to be inoculated, and who therefore rely on herd immunity for their protection from potentially deadly, yet preventable diseases.

I realise vaccination has become a very emotive issue, mostly as a result of the emergence of a variety of predominantly internet-led conspiracy theories that have linked some vaccines, erroneously, with autism and other serious conditions. From the perspective of a mother who has lost her child for reasons that I only wish had been preventable, I cannot fathom how a parent fortunate enough to have a living child could take such a real risk to their children's lives in choosing not to vaccinate against preventable diseases. I do understand that most people who object to vaccination are doing so for the exact same reasons - to protect their children from what they see as perceived harms, however it is an established scientific and medically-accepted fact that vaccination saves lives. Of course, as with any medical procedure, there are associated risks, however minute. Those small risks are outweighed very easily when you consider the alternative that we are facing, though: the re-introduction of dangerous childhood diseases that we'd previously successfully eradicated.

The anti-vaccine movement is a predominantly Western, middle-class phenomenon. Such parents are only able to convince themselves their children are better off protected from the 'evils' of vaccines precisely because they are privileged and fortunate enough never to have seen first hand the devastation caused by polio or to have ever been touched by a child's death from diphtheria or whooping cough. You don't have to go too far from Australian shores, and sometimes within Australia itself, to find communities still devastated by the outbreak of vaccine-preventable diseases because they lack the funds and public health programs to exercise the very choice that many anti-vaccinators so vehemently oppose.

I am one of those privileged parents. Perhaps I'm even more privileged in that I am a highly-educated woman with multiple degrees and a consequent ability to conduct reliable research, assess information, and to draw conclusions from what I find. Though I have had much opportunity to practice those higher-order thinking skills, and am probably more experienced than the average person in using them, I don't for a minute, however, profess to know or understand more about topics as complex as infectious diseases and public health than experts who have devoted their entire careers to such matters. The thing that bothers me so much about anti-vaccinators is the arrogance many of them profess when they say 'I know best'. If you're going to take a stand against widely-established and credible facts (and you're entitled to do so) you really need to be able to reference more than a series of discredited studies and a bunch of usually anecdotal, instead of empirical, evidence.

As fast as passionate anti-vaccinators can search the internet for yet another anecdotal story that 'proves' vaccines are dangerous, science is busting the shit out of each and every one of their assertions. For a very layman's explanation of how it is doing so, you could begin by reading this. I can see the anti-vaccinator's point of view, and I can see their fear, but I am able to recognise that the evidence shows those fears are predominantly misdirected. Personal experience of an adverse event after vaccination, which underpins much anti-vaccine rhetoric, does not stand as a valid argument against otherwise compelling, established evidence. There are two so-called 'logical fallacies' at play here. The first is that anecdotal evidence can never be a true measure of proven statistical realities, for reasons that are explained very simply here.

The second is making an argument based on false cause. This is the type of thinking which posits a 'definite' causal connection between two different events (i.e. my child was vaccinated, and later developed autism, therefore vaccination caused my child's autism) can be intensely problematic, and is also often deeply flawed, although very common amongst objectors to immunisation.

The evidence shows that the odds your child will suffer an adverse reaction to immunisation are very, very slim. The statistics are explained very clearly here, in a handy graphic, and the same website has a lot of really interesting information about the actual facts in question.

At any rate, it's all very well for us to sit around and argue about it, or for me to try and intellectualise how I feel about it,  but these things have been been discussed much more eloquently in so many other places. But while we argue, because of falling vaccination rates, babies and other people with vulnerable immune systems, are experiencing the very real consequences of anti-vaccinators' actions, or as the case may be, inactions. This baby's death from pertussis (whooping cough) is just one of many that are needlessly occurring. Newborns can't be vaccinated for pertussis until they are a couple of months old. This baby relied upon those around her having immunity to the disease for her survival from it. She died.

This particular case also highlights the need for parents, grandparents, and others who spend their time around young babies to ensure that their immunity from infectious diseases has not waned over time. Just yesterday I received the pertussis/diphtheria/tetanus booster in recognition of the fact that we hope, soon, to be able to try for another baby. Knowing what it is like for a child to die, we could not knowingly put an otherwise healthy child at risk of dying from something we had the means to be able to wholly prevent. For the record, the vaccination really bloody hurt. My arm is very sore and tender today and I couldn't sleep on my side last night. But it's a hell of a lot less painful than the alternative: the potential serious or fatal illness of a child you know or love.

Though I'm able to understand where anti-vaccinators' points of view come from, even whilst disagreeing with them, I know I'd find it hard to maintain the same level of understanding for their cause when I am holding my own vulnerable baby in my arms and am desperate to have it live. I know that there's no way I could let my newborn baby within spitting distance of a knowingly unvaccinated person and be able to sleep at night. I'm also aware that this is likely to cause some problems in the future for our family as Leslie has a few of these erroneous vaccine myths circulating amongst his own family members, who, as a result, have chosen not to vaccinate their young children. That story is one to be, unfortunately, continued.

Finding compassion in unlikely places

This week I received a letter from Centrelink that was really just the nicest letter you could ever expect to get from a government agency or bureaucratic institution. No one was more surprised than me, as those who know me well will know what a conflicted relationship I've had with this agency in the past!

The letter was about our claim for bereavement payment, which we were eligible for to help with expenses after Max died. They wrote to tell us that the claim would be paid, but their letter was so carefully and simply worded, written to take into account the sensitivity and confusion people in our situation experience, that the letter made me actually cry. To think that someone had given thought to how such a letter might be received, and paid attention to how it was worded so as to convey all the important information without making the reader feel bombarded, all the while making it kind and personal, was really quite an achievement and for the first time in my life I felt like the government actually cared about me as a person!

Part of what touched me most about the letter was its acknowledgement of Max as a person who had been loved. 'We express our deepest sympathy on the loss of Maxwell', it said. I've no doubt that it was a form letter, but it meant so much to see his name in print like that, and for them to tell me that they were helping me in recognition of the fact that we have suffered a trauma, meant I also felt acknowledged as his mother.

That they were giving me money seemed like such a small thing after the sentiment touched me so much. I feel silly saying it, but that randomly generated letter meant so much to me, and I will keep it with Max's special things as another piece of evidence that he was indeed here, and that he mattered, and that the country he was born into cared about him some how.

What they don't tell you about grief

In an article in The Daily Life this week, author Kerri Sackville writes about how her life, and her grief, have changed since the death of her sister some years ago. Specifically, she writes about the physical things that remain after a person has died - their belongings and their clothes, for example - and how these can provide a connection to a loved one long after they've been gone. The realisation that "this is it"; that "there will never be anything else" apart from those few remaining miscellanies is one that's hard to get your head around, she says. And she's right. I have very few possessions that belonged to Max. I have lots that were going to be his, but none that he was expressly connected with - no clothes that he wore, no toys that he played with. As a result, I've tried desperately to collect memories of him in other ways, such as through this blog, where I can record all of the things he has touched in me emotionally in lieu of anything he touched physically in this world.

Sackville writes about the clothes she inherited from her sister. In the beginning, wearing those clothes made her feel closer to her sister, as if they were impregnated with her very essence. However she also describes how the passage of time and the ongoing experience of grief have changed her relationship with her sister's things. The clothes themselves are no longer imbued with the kind of emotional significance they once were, she says. "I don’t feel her presence in her possessions anymore; that sense has dissipated over the years. And it’s sad. I feel like she’s slipping away and I need something to grasp onto."

Lots of people have been telling me lately that time heals; that I will go on to have a happy life despite the tragedy of Max's death. On some levels I don't doubt the probability of this. I know that the feelings we have grow and change over time and I know from other losses I have experienced in my life that we are, somehow, able to move on and find meaning again in new, and sometimes unexpected ways. Though this is supposed to be a comforting thought and intended to reassure me that the pain won't always feel this unbearable, it is in many ways a more distressing thought than imagining the pain will never end. Sackville sums up this paradox so well:

'They don’t tell you that life going on is its own source of pain. They don’t tell you that it’s confusing and guilt-inducing to see yourself moving forward with your life - taking on new projects, experiencing new adventures, making new friends, and assimilating clothes into your wardrobe - when the person you love is gone'

The thought of accepting that I can have a happy and fulfilling life without my son, and with the knowledge that everything I love can be taken away in an instant, is really objectionable to me some days at the moment. I feel a responsibility to actively grieve for Max, because my grief is simultaneously my love for him. That's what makes it hurt so much. On other days, however, I feel conversely that I owe it to him to go on and make the days I have left on earth count for something because he did not get a chance to. There seems to be no middle ground between these two conflicting thoughts and I oscillate continuously from one to the other, meaning on any given day the people who love me don't know if they're going to get hopeful or hopeless Janelle. It's exhausting.

Meanwhile, I search continuously for connections to Max and am disbelieving in the same way Sackville is that I have to make do with the scanty ones we were able to form in the few hours we had together.

The Adventures of Pepper and Sebastian

The adventures of Pepper and Sebastian so far go something like this:



Other times, they are more like this:



What is an established fact is that Simon's cartoons pretty accurately describe the antics of our household, and can always be relied upon to make me laugh. When I'm at my lowest, Leslie often plays one to me and I can't help but be instantly cheered up. We love Simon's Cat, and if you love cats too, then you'll really enjoy watching all of his videos!

We love our own kitties even more! Pepper and Sebastian are, despite Pepper's public shows of disaffection, getting along quite well. It is quite pathetic, though, to watch little Sebastian try so desperately to be Peppy's friend and for Peppy to constantly rebut his heartfelt attempts! Mind you, Sebastian does often commit stealth attacks on an unsuspecting Peppy (and us, as well!) so he really brings a lot of it on himself!

One of the main 'adjustment' issues we are having with them is that they both constantly want to eat each other's food. As Peppy is on a special diet for his digestive issues, it is important that he gets the right food. Sebastian's kitten food is also very high in fat, and from sneaking it every time he gets the opportunity, I can already tell Peppy has put on some dreaded kilos, which means we are going to have to do something about it fairly soon. At the moment the only way we can prevent them stealing from each other is shutting Sebastian in another room to have his meal, or by one of us standing by each of the bowls to prevent straying. Meal time has become quite a stressful event!

Sebastian is still peeing on our bed, which is the worst. If he does not stop doing this after he is desexed in a fortnight's time then we will have to think about consulting an animal behaviourist! Come on, Sebastian, if you stop doing this we'll let you sleep with us all night and won't even mind if you wake us up by putting your tongue up our noses!

1 Million Kilo Challenge: Final Update!

I am so happy to announce that Leslie and I have met, and in many cases actually exceeded, our goals in the 1 Million Kilo Challenge that we started all the way back in January.

We began the challenge as a way of raising money to aid research into preterm birth at the Royal Women's Hospital, where Max was born. The challenge was also a chance for us to make some positive changes to our lives, in the hope that we would gain fitness and strength to help us through what has been an immensely harrowing time.

Friends and family donated money to us after we pledged individual weight loss goals. Leslie pledged to lose 8kg and I pledged to lose 5kg.

I am so proud to say that Leslie exceeded his weight loss goal by 2kg, losing a whopping 10kg as a result of changes to his diet. He is looking so wonderful, and so handsome, and I know he is feeling the benefits in his energy levels, as well as pride in his achievements.

I only lost 2.5kg of my 5kg goal, however I believe I may have been a little ambitious in my goal-setting! I now weigh 54.4kg, which is slightly less than I did when I became pregnant with Max. Though I would have liked to reach 53kg, I am still pleased with the loss I achieved. Both Leslie and I will continue, unofficially, on the challenge, and will report in on our efforts to create healthier lives from time to time.

By far our biggest achievement, however, has been the astonishing sum of money we have raised, with the help of our family, friends, and networks, for the Royal Women's Hospital Foundation. We started with a goal of only $1000, which in itself felt like quite a challenge at the time. Soon, however, we'd met our target and we found ourselves moving our goal posts...to $2000, then $3000, then $4000, and then to a whopping $5000!

Not only did we meet our revised $5000 fundraising total, but we actually exceeded it! Our grand total at the end of the challenge was:

$5236.06

Wow!

We would both like to take this opportunity to thank our very generous friends, family and colleagues, who not only donated money in memory of Max, but some of whom then raised funds amongst their own networks to collect even more money (and lose even more weight!). 

Special heartfelt thanks go to Andrea, Kate, my Aunty Jill, her friend and colleague Catherine and my cousin Stephanie for their passionate and dedicated fundraising efforts. We could not be more grateful.

And our congratulations go to all those others who undertook the weight loss challenge with us, including my cousin Kristy, who lost a signifiant amount of weight in her own right, despite having just given birth to her own baby a short time beforehand.

We could not be prouder of you all.

As if that is not enough, at the end of the challenge, In Memory of Max was still the top fundraising team from the whole event!

Top 10 Fundraising Teams at the end of the challenge

The raising of these funds has been the first thing we have been able to achieve, as Max's parents, to honour him. We want to make sure that his life and his memory brings as much light to the world as he brought to ours. Though we do not yet know what our future holds without him, we know that we will always strive to do good things in his name, and to be better people in his honour. 

Thank you, everyone, for helping us start that legacy. It means so much to us that Max meant something to each of you.

Just for today

Just For Today

~by V. Tushingham, taken from the Bereaved Parents of the USA Tampa Bay Newsletter, Sept 2001.

Just for today, I will try to live through the next 24 hours...not expecting to get over my child's death, but learning to live with it...one day at a time

Just for today, I'll remember my child's life, not his death, and bask in the comfort of the treasured days and moments we shared.

Just for today, I will forgive all the family and friends who didn't help or comfort me the way I needed them to. They truly did not know how.

Just for today, I will reach out to comfort a relative or friend of my child. For they are hurting too, and perhaps we can help each other.

Just for today, I will free myself from my self-inflicted burden of guilt. For deep in my heart, I know if there was anything in this world I could have done to save my child from death, I would have done it.

Just for today, I will honor my child's memory by doing something with another child, be it my own, or someone else's, because I know that would make my child proud.

Just for today, I will offer my hand in friendship to other bereaved parents, fo I DO know how they feel.

Just for today, I will smile...no matter how much I hurt on the inside...for maybe if I smile a little, my heart will soften and I will begin to heal.

Just for today, I will allow myself to be happy and enjoy myself, for I know I am not deserting my child by moving on.

Just for today, I will accept that I did NOT die when my child did. My life did go on and I am the ONLY one who can make that life worthwhile again.

Another mother; another son

Today I sobbed like a child, as I have so many times over the last fortnight, as feelings of loneliness and despair washed over me. At times I feel so alone in my grief. I search endlessly for someone to help me for I am so scared of the intensity of my feelings. I feel like I am drowning, or slowly dying, and no one is noticing.

I reach out in all the places I know for someone to come and hold my hand. I feel that no one is listening to my pleas; that even those who love me are turning away from the confronting spectacle that is me begging for a release from this pain, and bargaining for my baby's return.

Of course, this is not the truth of my situation, but my interpretation of it nonetheless. In actuality I have many people in my life who love and care for me and who are doing their best to help me. The lonely part of this is that countless of my friends and family are doing their very best, but that even their best efforts and their most generous gestures don't even begin to afford me relief. Who or what can help me if those who are trying everything they can, cannot? There is no answer to this question, for no one can help me. As I can feel myself unravelling, helpless to stop it, so too can they only stand by and watch that tightly wound ball of feeling go frantically in every direction, searching for its end.

Then, after a day like this, I find this video. There's a mother grieving here, too. Her son committed suicide at the age of sixteen in a remote and troubled aboriginal community. His death was one of many unnecessary and tragic ones that are happening around her. They are public deaths, witnessed by children and families. This mother was helpless to stop her son's death, though she feels the same regrets as I do that she should have done more or done differently to have prevented it. Those things keep her up until 3 or 4am she says, and I begin to think I understand some of how she feels.

But I don't. Not really. How can I? She, too, feels, alone, yes. But she doesn't just feel it. She is alone, much more than I ever will be. She has not had a shred of counselling. She has her remaining family members, but as the story mentions, there are not many outside of that willing to help her or the other young people who are suffering around her. No professionals to diagnose and treat her trauma. No one trained to help her pick up the pieces.

I watched this video and I cried more because I could not imagine how she faces each day in the absence of the very real support structures that I take for granted. If I can feel this much pain and loneliness despite all of the assistance I have been provided, how much moreso must she be suffering? An indescribable amount. An insurmountable amount. Where does this women find hope that things will be OK? How does she live with the image of her son's violent death when she wakes up every morning?

I wish I could ask her all these things. For surely she has things I could learn - things I should learn. Things we all should learn so that we can think of them when tragedy strikes us and realise that the lightening has hit harder somewhere else first.

This mother - and all the mothers I've come to know who are missing their children tonight - are in my thoughts, and my tears are for them, also. As much as I wish for help, I also wish I could be the help they need.

Words of Wisdom

I didn't sleep at all well last night, and consequently got up this morning feeling very heavy and world-weary. I stumbled upon some words of wisdom, which I thought worthwhile to share. I shall contemplate them today when I am tired and it is rainy. They say I can endure. I know I have. But for how long?

Shared from www.goodmorningandgoodnight.com,

discovered via StumbleUpon

Things-I-Love Thursday: Swing Dancing

Leslie suggested the subject matter for this week's Things-I-Love-Thursday. And he should know. That's where we met - swing dancing! I was a newcomer to Swing Patrol, and he a more experienced dancer. I'm sure we'd seen each other around before the day we met formally, but the first time we remember actually meeting was at an aerials workshop in Richmond one weekend. I was partnered up with him to practice a move known as the 'judo flip', which you can see in the following video if you fast-forward to just before 1:10.

 

I was a pretty nervous aerials participant. I'm not as light on my feet as I should be, despite being quite petite, and to be thrown in the air by a stranger you had to trust to keep you in one piece was quite a daunting prospect. Of course there is a lot of lead up to the actual aerial itself, and you have a spotter when you are learning, but it is still very nerve wracking, not to mention the fact that parts of you you didn't even know existed hurt like hell the next day...and the day after that...!

You get to know people very quickly and intimately when you're dancing with them like that. You reach a level of physical trust and intimacy that someone long before you would in any other context. Many firm friendships and relationships are formed in this community, illustrated by the fact that most swing dancers end up dating, marrying, or procreating with other swing dancers. As a result of our dancing, Leslie and I both shared a very firm friendship before we embarked upon a relationship together, and this friendship is still something that provides us with a very solid basis for our lives together. We genuinely enjoy each other's company, and to have this shared interest is something really special too. Not many couples have something like that.

Here we are performing at the annual Performance Ball, before we were actually a couple! It makes me smile so much to see us having such a great time in this video!

So how did I get involved in this amazing community? I was introduced to it through a friend of mine, Michael, when I was going through one of my many depressive bouts during my late twenties. I pretty much never left the house during some of this time, and I was feeling very isolated. He thought it would be something I'd enjoy, and that might bring me out of myself a little. He was right, on both counts, and I continued to go dancing long after he'd stopped going regularly.

Me and my friend Michael, who first introduced me to swing dancing, doing a little
performance at my Roaring Twenties-themed 30th birthday party.

Over the last eighteen months, though, I've barely been dancing at all, which I constantly regret, but can't seem to find the motivation to fix. Part of this is that I am a pathological perfectionist. Once something starts to get hard, and I realise I might have to be a bit crap at it for a while before I get better, I instantly don't want to do it anymore. This is by far one of my greatest weaknesses and something I really dislike about myself. There's so much more I'd be capable of learning or achieving if I didn't automatically think I had to be the best at it.

As a consequence of this silly thinking, once I was able to dance at a reasonable level, I lost the motivation to keep moving through the ranks with the advanced dancers. There are so many amazing dancers in swing community, and I couldn't ever see myself with their passion or pizazz, so I think I started to think 'what is the point?' if you are never going to be the best? This is very short-sighted of me, as the very pleasure of dancing is that you enjoy doing it no matter how good you are at it, and the truth is that I am not even half bad at it in the first place.

A few years ago, I wrote this article on swing dancing and depression for a university publication. It's timely for me to read it again as it really expresses all the things I love about swing dancing, and makes me realise I have more reason than ever to start going again. I need that jazz to bring me out of myself again! To bring me some joy!

Me frocked up with one of the lovely gentlemen of swing at a ball

What will it take to get me dancing again? Well pretty much I just need someone to get me out of the house upon force of death to turn up at the venue. Once you're there you can't have a bad time no matter how you try. That's the best part about it. I have so many friends from Swing Patrol who'd love to see me back, but I kind of feel like I'd be starting back at square one, and that I won't be able to keep up with the standard everyone I know is now at. There's nothing wrong with that, but as I mentioned before, I'm very hard on myself!

Leslie is performing at this year's Meet The Scene Ball, so maybe that'll be enough incentive for me to frock up and dust off my shoes. I'm sure seeing him dance with a thousand other women might be a bit of a kick in the right direction, at any rate! Hands off my man, ladies! Hands off!

Timely messages

I've had a few timely messages come my way the last week or so as I've struggled to come to terms with the fact that every Tom, Dick, and Harry felt they could have an 'opinion' on the very raw grief I chose to share on the old information superhighway (remember when they used to call it that?)

Before I move on to those, I'd like to share with you some of the hard lessons I learned from that experience. Here are the Top 5 'take home' messages from it, as they say in the corporate world:


Top 5 Things the Internet Inadvertently Taught Me This Week

1) The internet makes makes the process of sharing information and opinions much more democratic, which is important, but its anonymity permits people to attack others for expressing their right to free speech with little consequences for their actions. Once upon a time people would have to go to the effort of writing a letter to the editor, or write a response of publishable quality in their own right, in order to disagree with a published piece. Responses could then be vetted so that only those that genuinely encouraged healthy debate would be published, and the inevitable crazy letters would be rolled up and smoked after hours by interns. Experience has made very clear to me the fact that you don't need a licence to operate the internet, but I am looking into this as a matter of urgency. . .

2) Due to the fact that we are now all one big social network and online 'friends' with every human being we've ever encountered, from high school friends, to ex-colleagues, to friends of your best friend's cousin, you suddenly find out that you actually know some of these militant illiterates. More disturbingly, you realise that you've pretty much invited them into your bedroom by giving them unfettered access to your Facebook wall. Suddenly you're engrossed in the Yellow Pages looking for someone to come and change the locks you so naively gave out spare keys for. Hell, you even have to consider moving out altogether so they stop driving by with their beady eyes hanging out the car window at night.

3) The internet, whilst trying to make us feel 'connected', can actually be a very lonely place. The people on it are kind of there, in that they're talking all the time, but none of them are sitting in your living room collecting the tearful fruits of your wailing in a bucket and passing you tissues to blow your nose. Only your real friends do that, so what is the point of bothering to interact with the rest, who mostly just exasperate you? Yes, you can make good friends online. I have done so a few times in my life. But those people whose friendship transpires from the virtual to the real world are the exception, not the rule. There was a very interesting article on the topic published recently in The Atlantic, which you can read here.

4) The best thing you can do on the internet, as in life itself, is not to interact with people at all, but instead to spend all of your time online watching funny cat videos and looking at porn (go, on, click - I know you want to).

5) That just when you've given up on the internet and hovered your finger over the 'disconnect' button for the millionth time, something that makes you love your online community happens to make you doubt your decision all over again. For example, someone you admire and follow stealthily on Twitter, posts an excellent quote which is really timely and really resonates with you, and you're really thankful you stumbled across it. That's what happened to me this week when Catherine Deveney posted the following quote on her Facebook wall:

It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat (From Theodore Roosevelt, The Man in the Arena, April 23, 1910).

How very true. 'I should keep trying to strive valiantly to help people understand a bereaved mother's grief', I said to myself. In the 30 seconds it took me to read this I was inspired all over again by those I admire who share their views, however unpopular, with the world. I felt better.

It happened the second time only this morning when I stumbled across the link to a blog where a fellow bereaved mother had written something that expressed exactly how I felt, even better than I could have. Please, read it here. This made me realise that maybe, after all, my voice is important to someone as this lady's was to me today. And that this blog could be important to others beyond its use as a place for me to honour Max's memory and keep him alive for those who care about him and about me.

I have made this blog private, however, with access by password only, for a while. I don't feel strong enough to defend myself against those who would take issue with the honest expression of my thoughts and feelings. I feel this is a shame, as I am proud of what I do in this space, but I don't yet know how to adequately negotiate this public/private divide, and I want only supportive, loving people to be by my side as I awkwardly learn.

Howls of protest, discordantly received

I’ve written on this blog previously about my friend whose baby was due at the same time Max was expected to be born. I had, ever since his death, known that this would be a hard thing for me to come to terms with. Newborn babies in general are hard for me to see or hear of at the moment. A trip to the supermarket is enough to do me in at times. That this baby would be born at exactly the same time Max should have been felt like an extra blow. My friend and I started our pregnancy journeys within a fortnight of each other, but finished them in tragically incomparable circumstances. She was setting up a nursery at the same time I was packing one away, surrounded by clothes and toys and bedding that would never be used.

As a way of dealing with my feelings towards this other baby’s arrival, as well as to help my friend better understand why her joy could possibly cause me so much sorrow, I wrote my feelings down. This is what I do. It’s how I make sense of what is happening to me. It’s how I stop the thousands of thoughts and feelings from suffocating me.

In the piece I wrote, I wanted to express how sorry I was that I could not feel happy at my friend’s news; how guilty I felt that our friendship should have to suffer a dislocation of experience so extreme that we might never be able to look at each other the same way.

I knew that her son would always be to me a reminder of everything I’d lost. I knew that she might always look at me with relief that it was my baby who died and not hers.

I wanted to walk away, to never see her again, to save myself that pain. However, our friendship is an old one, based on a shared history that goes back eighteen years, and I did not want to lose this forever because of something that was not her fault. We have grown apart a lot already over the years, and I knew that any further distance we created might mean the difference to us staying in each other’s lives or not.

The piece I wrote was published on Mia Freedman’s website, MamaMia. After I wrote it I realised that I had inadvertently given voice to some powerful emotions, and that I’d expressed a side of grief that no one else was talking about, but which I was sure was universal. The conflicted feelings I had came from too primal and raw a place to have just belonged to me. I felt, instead, that I had simply named and acknowledged feelings that was there in us all, but which perhaps remained unrecognisable until you were forced, like I had been, to weigh up your remaining fortunes after a bloody battle. The overwhelming theme of those feelings is shock and injustice, underpinned by a desperate desire for a re-match; to deal out the deck again in the hope you’ll get a better hand. 

My post on MamaMia

I have learned over the past four months that grieving for a lost child is the messiest kind of grief of all. Its faces are many and varied - they are unfamiliar, surprising and constantly distressing to me. The grief of losing a child is infected not only with the expected sense of loss, and longing, and sorrow, but perturbation that an innocent, dearly-wanted baby must lose his life before he even had a chance to defend it.

When you realise that a child can die for no good reason, from indeterminable causes, and there’s nothing you can do to stop it, you’re right to get angry, surely. I’d question anyone who did not feel overwhelming indignation at this fact.

The anger you feel is not directed at any one individual, but at the world at large. Every pregnant woman, and every new mother represents the things you feel you will never now enjoy. Every newborn baby stands in for the child you have lost. These are entirely irrational thoughts, but you can’t escape them, now matter how hard you try to reason with them, because reason had nothing to do with putting them there in the first place. Grief did, and grief doesn’t play by the usual rules of reason and intellect.

I was very careful to write in my article that I was never angry at my friend, personally, for her good fortune. I wished her no ill-will. How could I? She’s had her own misfortunes in life. Her baby was as wanted and loved as Max was, and she was my oldest friend. She did not deserve anything less than a beautiful healthy baby. But neither did I, and I was angry at the universe for ‘choosing’ me to suffer, and for putting two old friends in the emotionally fraught position where they’d always now face each other from opposite sides of a tormenting barbed-wire fence. What I wrote was an attempt to show how people can begin a journey from the same place, but end up in two wildly different destinations, despite having done the exact same things, having had the exact same thoughts.

Losing a child, as those who have lost know, and those who haven’t must be able to imagine, does make you question things, not least of all why so many people around you - it seems, everyone but you - gets their happy ending (or at least what seems to you to be a happy ending).

Part of the same question of ‘why me?’ that is the perfectly understandable cry of newly bereaved mothers everywhere, is unavoidably ‘why her?’. Not why this woman or that woman in particular gets to keep their baby, but why any woman does if all women can’t. I guess what I’m trying to say is that your grief doesn’t discriminate between those you know and love and those you don’t; those who are 'deserving' and those who are not. All you can see is a storm of ‘other’ women, everywhere you look, that have what you don’t, for no better reason than they were lucky and you were not. There’s no escaping them for they are, literally, everywhere. You haven’t a chance to withdraw, as you still have to go to the library, the supermarket, to your friends' celebrations and events, yet neither have you the strength to face them head on. All you can do is lay down before the lucky ones and submit and howl at the injustice that has put you there on the ground underneath their feet.

That is what I did in my article. I laid down any protective pretense I might have had and I said to my friend, ‘this is all I’ve got. I have not the strength to give you the congratulations and attention you deserve from a friend. I cannot be a friend at all. I’m so sorry, I’m so sorry, but I’m sick and I’m scared and I’m lonely and I want my baby safe with me as you have yours. Can you understand?’.

The sentiment of my words was only ever that I desperately wanted my baby back so we could enjoy our children together as we’d always planned. To my utter surprise and ensuing distress, however, my friend did not receive my sentiments the way I’d intended. She read my words as expressing that I did not believe her baby deserved to live. She told me that I had deliberately been trying to cause hurt to her and her family, that I was cruel and undeserving. Her sentiment was, I felt, that I was a very bad loser, as if we’d just had a game of tennis and I’d thrown my racquet in disgust at an unfair umpiring decision.

But this was no game! My baby was dead! I’d never even wanted to be in that match, especially not playing against my oldest friend, knowing one of us most lose. To be considered a good player in the game of ‘life’ was it now my social responsibility to walk away quietly and grieve ever so politely and prettily so as not to upset the spectators who’d hoped for a nice day out?

I did not take this confrontation well. I had literally nothing left in my emotional reserves by the time she’d emailed me to berate me for my selfishness and cruelty. It was Easter and I was suffering. I wrote back over and over how sorry I was that she’d so fatally misunderstood my words. I tried over and over to explain myself. I took responsibility for hurting her even though it was never my intention, but she just found more reasons to berate me: I did not say the right thing in a text message I sent her after her son’s birth. I should not have shared the article with my friends and family on Facebook. I had not respected her boundaries. In short, I should not have so unforgivably encroached on her perfect moment. She did not want to share my pain with me or forgive me for its ugly expression as my other loved ones have so generously done so.

In the end, my friend could not understand what I’d written, and I could not understand how she’d read it as she had. She felt judged. I felt offended that someone who has known me for a lifetime could think I’d be capable of such deliberate cruelty. I realised that she did not know me at all, and I suddenly felt like I’d exposed my innermost feelings for nothing. I felt so vulnerable.

But it hadn’t been for nothing. By the time the article had been up for even a day it had received so many comments from people who ‘got it’ that I couldn’t legitimately have those doubts. The article was read, by most, as it was intended: to express how much I wish I could have celebrated with my friend and how much I wished for my baby to be returned to me.

Aside from these published comments on the site itself, which were numerous, I received private emails from many more, including well-wishes from a number of support organisations, including Heartfelt and Bears of Hope, who had shared my article with their followers. They were, each of them, expressing the very same thing:

‘You gave my feelings a voice’; ‘I know this experience’; ‘I was afraid to acknowledge this side of my grief’; ‘I thought I was the only one’; Thank you.

So where did this leave me?

Well, it left me quite shattered, trying to balance the regret at having hurt my friend with the relief I felt that I had found myself part of a community of people who actually understood my feelings. I was also thankful that I had, in my honesty, helped countless other people that day feel acknowledged and understood in their grief.

For these reasons I could not regret having written it, despite the hurt it had caused the person for whom it was intended to move.

I sobbed that day, Easter Monday, in a way that I have not since the day of Max’s funeral - until I’d made myself sick. Until I thought I would not recover. Here was just another face of grief for me to encounter, that of feeling misunderstood and judged, and, regrettably, that of losing a friend. It was unbearable. I was inconsolable.

On a practical level, I did not have the physical energy to defend myself against my friend’s accusations and had already given so many apologies that I did not know where to go from there. My instinct was to protect myself from further misunderstanding and judgement and to withdraw from all contact - with everyone.

I didn’t want our friendship to end as a result of the thing I’d written to save it, but I knew that after this she would never look at me the same way again, nor I , her. I felt very unsafe, as if this confrontation was just the start of a thousand more walls that would crumble around me.

To my surprise, nothing else did come crashing down after I stopped replying to those messages. I removed her from my Facebook list for my own sanity, though I felt very petty for doing so. I no longer wanted to feel guilty for implicating her in my public displays of grief. Facebook is supposed to be a place for you to connect with your friends and family and I felt I could not do this if I had to veto what I posted.

Also, I just wanted her to go and enjoy her newborn baby instead of fighting with me. I had only the briefest moment with my child. To think someone lucky enough to keep theirs would be wasting that valuable time arguing semantics and demanding the moral high ground on the internet was further upsetting to me.

What I did realise, later that week as I dealt with the anxiety of this fallout, is how unprepared we really are, as individuals, and as a society, to experience and adequately respond to expressions of grief and sorrow in any meaningful way. We are unwilling to witness grieving in its messiest, bloodiest, rawest manifestations. It confronts us and scares us and raises our defences. As a result, we judge it, we stifle it, we don’t want to be infected by it when it inflicts others, or included in it alongside the ones we love. We want only to know of the nice polite tears, not the primitive wails. We want to see the recovery, but we don’t want to sit with people while they break - the most important job of all.

I am as guilty as the next person for wanting to avoid distressing feelings. The difference is that now I have no choice. I don't have the privilege of asking to be kept out of this grief, or out of the grief of my friends and family who are also suffering Max's loss, and in many cases, suffering at the very thought that I should suffer so. In the same way, they are implicated in this sorry affair whether they like it or not. 

My mother is helplessly watching her daughter in pain. Leslie is bearing the weight of dealing with his own feelings as well as mine, which are not as easily hidden. Kate, I can only imagine, is struggling with many more memories of the traumatic circumstances of Max's birth than I have. She did not have the benefit of pethidine to make her memories fuzzy, but she does not regret being there, as much as she has every right to wish she'd never met me and ended up in that room. My dearest Anika feels like she can't act upon her desire to have another baby without pouring salt into her best friend's stinging wounds. We are all affected by the pain of those we love, for that is what love is - for better or worse, whether its the love of a spouse, a daughter, or a faithful friend.

This is why I feel the only answer to my friend's request to 'keep her out of it' is to keep her out of my life altogether. Max's life, and his death, informs so much of who I am right now, and I imagine who I will be from now on. She and her baby are part of this grief whether they want to be or not. I'm sorry for that, but I can't change it. The first real obstacle I've faced on the road to accepting this 'new' me has been the acceptance that not everyone I love will be able to give me the support and understanding I need. Sometimes they won't want to, and they'll just want to be happy and forget about me. I can't blame them for that, but I wish I could say I'd been more prepared for it.