A letter to the Royal Women's Hospital Foundation

I've been on a letter writing campaign. In the early weeks after Max died I wrote many, many letters and cards of gratitude for the care and support we received, but then I kind of hit a wall with them, and I just didn't seem to have the energy anymore. There are still quite a few that I'd like to write and send, so I'm chipping away at them gradually. I'm posting them here so that I have a record of all the words I've sent out to the world in Max's name, which is so important to me.

This letter is to the Royal Women's Hospital Foundation, which supports the research and development arm of the hospital where Max was born. We raised a fair bit of money for them amongst our friends and families earlier this year, in Max's memory. I wanted to tell them why we did so. I wanted them to know that the research they enable makes a difference to people. I am attaching a photo of Max to the letter.

Here is the letter:

Dear Royal Women’s Hospital Foundation,

Recently we raised $5376 for your organisation through donations from ourselves, our families and our friends to an Everyday Hero fundraising page we set up. I wanted to share with you our gratitude for the life-saving research you do to help women and their babies, as well as the story behind why we chose your foundation as the recipient of our fundraising efforts.

Eight months and two days ago, on 24th November 2011, we had a beautiful baby boy at the Royal Women’s Hospital. We named him Maxwell (Max). He was the most perfect little baby you will ever have seen, but for some reason we don’t yet understand, we would not get to keep Max. He died only 6 hours after he was born due to the challenges he faced from being born extremely prematurely. Words cannot adequately describe the trauma, pain and sorrow we experienced on what should have been the happiest day of our lives - the day of our only child’s birth.

We say words cannot describe it, but we know that the people who work for your foundation must be able to imagine it, or else they wouldn’t work so tirelessly towards researching the potential causes of spontaneous preterm labour, such as I experienced that day, or towards its prevention or treatment. For that commitment we are grateful and so very humbled.

We would like to offer our heartfelt thanks to the Foundation and it’s researchers for the work you all do to make a difference to families like ours who have suffered the senseless loss of an otherwise perfect baby because we do not yet adequately understand the mechanisms that cause women to go into labour so early and unexpectedly.

The important work you enable does not stop with the researchers, however, but continues in the amazing care and compassion the amazing obstetricians and midwives at The Women’s provide. We have nothing but awe and praise for the care we experienced under very stressful, challenging circumstances. Thank you for everything you do to support and enhance their work, too. We can tell you, without doubt, that it truly does make a difference. It makes such a difference.

We will continue to support your research efforts in every way we can into the future, in honour of our darling son, who is so loved and so desperately missed.

With warmest wishes and the greatest respect,

Max's mum and dad.

Some things I do

One of the only things I seem to be able to achieve with any regularity at present is the churning through of popular TV programs. As I didn't even have a television before I moved in with Leslie, I never suspected my life would come to this, but I guess that is true in so many ways.

I am the type of person who tends to develop obsessions with things. Lots of people reading this will be nodding along in bemused agreement, I'm sure. This is true of TV shows, too, especially in the age of on demand viewing which means you can watch an entire series whenever and wherever you want. At the moment, my interest has been curiously piqued by Big Love, although I think I'm a bit slow to have gotten onto it. Essentially, it is about mormons and polygamy. It's fascinating, and for some reason reminds me a lot of Desperate Housewives - something about the streetscape, and the secrecy, and the power plays between the wives, although in this case they are all the wives of one man.

Contrary to last few blog entries, which have been mired in grief and sadness, there are some things that cheer me up, if only temporarily. Modern Family, 30 Rock, Parks and Recreation are all guaranteed to get a giggle out of me, no matter how dark my mood, so Leslie usually uses this to his advantage. He has been known to bookmark my favourite scenes and play them when I'm in a bad mood, which always annoys me as no one who is in a bad mood ever wants to be cheered up, do they? It does work though. Damn it, it works.

I mention these TV shows because I've been trying to keep track of what I do with myself when I'm not missing Max, or rather, whilst I'm missing Max, which would be the better description. I've done nothing of any real value for eight months now. Actually, even more than that, as I was so sick and useless for the five months I was pregnant that this time was also a bit of a write-off. It's hard for me to sit with this level of inactivity. I'm used to being busy. I'm used to achieving things. I have to remind myself there are things I have achieved - I've gone back to work part time, I've written a lot, I've read a lot. It's just that those things don't seem to count on my internal ledger. I don't afford them as much value as I should. And so, each day, I reprimand myself for not doing 'enough', except I don't really know what 'enough' is, and I'm so confused about what to do from here that I can't seem to move in any direction at all.

There's no Plan B for when your baby dies. This is one of the hardest practical aspects to deal with as you go forward afterwards. What now? I had not started maternity leave when Max was born so early. Thankfully I work in a school and the long summer holidays started the following week. I had from 24th November - 1st February off, after which I returned as if nothing had ever happened. As if it had all been a dream; all the preparations, all the hope. It was the cruellest thing. I was back where I started. No, I was much further back than that. I had no baby, and no hope of a baby, and no plans for the future. I slotted right back in. Or, I did on the surface. Everyone treated me the same as they ever did, which is not a criticism, or a complaint that they treated me badly, it's just that I was different, I was broken, and it felt like no one noticed or acted accordingly. I'm not sure what I expected. It's not that I wanted everyone to stand sombrely and dab their eyes while I made a procession back into the building, but then again, maybe I did. I wanted to know the world had changed. But of course it hadn't. It was just my world. No one else's. Just mine. That's when the loneliness sets in; when you realise that your baby died and no one else's world has tumbled from its axis. No one knows him, no one mourns him, except for you. I've had to work with numerous new staff members who don't even know I was pregnant or that I had a baby. How can that be? How can my beautiful baby, and the tragedy of his death, so quickly have become old news?

And you mourn for yourself as well as for your beloved baby in the months afterwards. There's all the knowledge of death, disability and suffering you can't un-know. There's the hope and happiness and innocence of pregnancy that's been snatched away, never to return. You miss the vitality and interest in things that you used to have as you drag yourself around as if you weigh 100kg more than you used to. There's the extreme sensitivity that means you must prepare yourself to be jolted, offended, upset and pissed off by the smallest of words or happenings, every time you leave the house. You find it hard to like people anymore. You can't listen, attentively and sympathetically, as you used to, and sometimes you realise you don't even care to - that you wouldn't mind if you never again had to open your mouth to a single human soul. There's suffering and sadness and desperation in grief, but there's also just boredom and apathy and fatigue. I didn't know that before - that after it's wrung you out it just wears you down.

Yes, I'm sick of being sad. There, I said it. But I don't feel I have a right to be. I feel that the sadness is mine to wear as a badge in Max's honour; that I'm shirking my responsibilities if I shed it or pay it less attention. I also feel that if I dare make plans for the future, no matter how small and insignificant, that the 'universe' is going to step in and make a big ugly mockery of them. I feel my name is some kind of hellish database which will light up with a warning message to its operator that says 'SHUT IT DOWN! SHUT IT DOWN! whenever I have a wish or plan. Yes, I believe that no wish of mine will ever again come true. I believe that nothing again will ever go right. Because how on earth could it? How can anything on earth go right, when so much has gone wrong? It seems a statistical impossibility. Yes, I feel marked alright. Marked with the sign of death and disappointment.

I hope you won't mind if I start recording some of the banal staff I do during the day on this blog. I need some kind of written evidence that I'm not just passively sitting and watching the world go by as much as I feel like I am. So here goes:

Today I started Pilates. I have some weird marathon runner's injury in my leg, even though the only time I'd ever break into a run is if I were running for my life. The Pilates is supposed to complement the physio treatment I'm receiving, but also help me to build strength so that those muscles aren't working in overdrive anymore. It's also supposed to be a good practice to implement during pregnancy, though I feel stupid for saying that, for daring to make a plan that might benefit me in some kind of unimaginable future. I found out during the assessment session that I have no core strength. Like, so little that I couldn't even isolate the muscles she was telling me about. 'What muscle? And where?' I kept saying. I honestly thought she was making them up at times. I don't necessarily feel bad about this, as I know I'm unfit, but it does make me wonder if any of us are aware of just how physically deficient we are! When she told me this, my mind went straight here: I have no core strength, my body is weak, I could not hold my baby in, Max died because I was not fit, I was not strong. It is all my fault.

And so, I will go back, I will do something good for myself, even if it is for that reason alone. Because there I go hoping. . . hoping for a brighter future and at the same time utterly disbelieving in the possibility. . .

Eight Months

Oh, Max. You are gone. You are still gone. This realisation - the one I've had a million times now - still takes my breath away. The pages of the calendar turn ever faster and not one of them has brought you back to me. I could slap myself sometimes for my stubborn belief that somehow you still exist, and that if I only look hard enough I will find you again. Perhaps you are not dead, but only lost, a word which has all the promise that I might find you again. Sometimes I get this rush of panic that perhaps I've left you at the supermarket, or forgotten to pick you up from the hospital. I still live with the residual hope that someone, somewhere, has made a terrible mistake.

I don't know how we ever expect children to understand the concept of death; it's forever-ness, when we can't even make sense of it ourselves. I'm 34 years old and still I can't quite believe in a forever without you. Eight months I've managed. A year I can only just contemplate. But the idea that you will still be gone, as gone as you ever were, in all my imagined futures is simply one that my mind, or my heart, absolutely refuses to contemplate. Your mum is stubborn like that. You might be dead, I think, but like hell you are staying that way.

I stare a lot. A lot. I can't stop looking at other people, doing the things that 'other' people do. Yes, often their looking after babies or wrangling small children. I look a lot at the mothers. Sometimes they are doing what I used to think were ordinary things, like doing a crossword or reading a book or grabbing a coffee on the way to work. I'm still stunned that they can get up in the morning and do these things. Now, my first thought is, 'while you are doing that crossword someone else is dying'. Or, I see people dropping their children off to school and I think 'how can you spend even a single day away from them knowing that it might be one you can't get back, that it might be the last time you see that child'.

This is evidence of a pathology of extreme anxiety, I realise that. No one can parent; indeed no one can live with that level of morbid fear on a daily basis. It's debilitating. But I have this feeling a lot. I don't want your daddy to go to work as that's one less day I will get to spend with him, and then one day he might die, and I'll wish beyond measure that I could get that day back. All of the things we spend our days doing seem so meaningless in the face of death. It's no wonder I can't set my mind to doing or achieving anything. Everything falls so short in the significance states. Nothing but staying alive, and making sure everyone I love stays alive, and that I don't waste a single moment of that time, is all that seems to matter.

It's not like this every day anymore. But still on a lot of them. Some days I feel really hopeful and motivated. I make lists of things I want to do with my life. I send emails. I organise paperwork. I arrange outings. But then, I'm just as likely to wake up one day and wonder what the hell I was thinking, what the hell does it matter. It is like having a split personality. It's exhausting.

Oh Max, you're gone. You are still gone. And soon, dreadfully, you will be long gone. Eight months has brought a world of distance between us. How will eighteen months feel? I want the time to stop. I don't want you to get further away. I don't want you to be only a memory, I want you to always be in my present. I want to be able to say 'I held my baby last week', not 'I once held my baby, a long time ago'. The passage of time seems an extra cruelty to bear, shipping you out into the night where I can not follow.

I cannot follow. I cannot follow any of this. . .

I love you. It's the only thing that's any longer true. I love you.

Dead, dead dead. . . still dead

How is it that I find myself taking my baby son to a funeral parlour at 10am on a winter's morning?

Because he is dead.

He is dead.

He is dead, dead, dead.

As dead as a doornail. As dead as a dodo. As dead as yesterday's front page news.

He went from cradle to grave in six hours flat. The dead go quickly, sometimes. So quickly, they leave. Even if there's time for a fond farewell it feels like they've slipped through your fingers just before you've finished your sentence.

For the second time I let them put him in a box and screw the lid on, tighter and tighter, until he's out of sight. He's a baby in a box. Sounds like some kind of novelty toy.

His brand new cot also lies in a box, waiting for the baby that never came home. It's a big box; unwieldy and impossible to hide in our small house. Much bigger than the tiny cube in which the baby lies crushed up and burned.

It's a pretty urn. As pretty as an urn for a dead baby gets.

I get it home and suddenly I'm incensed. It shouldn't be in my living room. WHY IS IT IN MY LIVING ROOM? Why? Fucking why?

I'm half inclined to smash it after all that. That's what I think of baby dust. It doesn't feel sacred. I don't know what's in there, but it sure as hell isn't my baby - the one with the soft, velvet cheeks and the tiny little mouth perpetually opened as if he were getting ready to coo to me the sweetest ever song.

I want to grind those ashes into a paste and plaster it across my face, and the face of every single person I know. I want them to know what it feels like to have dead baby all over you, as I will every single day for the rest of my life. I want to make some kind of mark on them, even the ones I love, so when I see them I will know that we are all in this together. A mark like we are the chosen ones, like the priest gives good Catholics on Ash Wednesday.

No one wants to hear this, but I picture my baby in the fire where they burned his precious infant body. I'm scared to put those images into words - the words are too, too brutal. Blistering, shrivelling, disappearing into. . . nothing. . . I wish I'd mummified him and kept him in a display case like the priceless objet d'art he was. He was a valuable original, impossible to reproduce. He was a masterpiece lost forever to us.

Ashes can't be remade into solid form, so he's not eligible for the much talked of heavenly resurrection. There's laws of physics, I'm sure, that could give me an exact answer as to why I can't make him whole again. I wish I knew them. Maybe then I'd understand.

He's dead, you know. Oh, my baby. He's dead. He's still dead, where once, for a few magical hours, he was alive. But now he's dead, dead, dead. My baby is bloody, fucking, dead.

200 Posts in Memory of Max: Kate's letter

Dear Janelley,

You are the best friend I have ever had. We have each spent a lifetime chasing imaginary or sometimes just impossible goals that we've set for ourselves. It comes as a shock when you realise you might just want a baby; something people have been doing for millions of years and something you can do in your teens without a degree or HECS debt or a house or a car or a partner or a trip to Europe or a career. Something other people want and seem to receive easily. Having a baby? Illiterate crack addicts do it every day. It can't be so hard. But what happens if the worst thing that can happen is something beyond your experience, beyond even your imagination. What happens if your baby dies? What does it mean? Who is to blame? What do you do?

Well if you're you (and luckily you absolutely are) you follow the truth of what you feel when you feel it. If you feel sad, you cry, if you feel happy (even for a split second) you laugh. If you feel upset, you say so, if you feel angry you take up yoga (OK I made that one up). Because you feel so strongly and so sincerely, you feel compelled to write, to challenge, to speak the truth. It hasn't been an easy path, there are not many people who are like you (I know this or we would hang out with them too!) and it can be confronting for people when much of our lives can very easily be lived without any authenticity. It's easy and I have done it, to drift along in life, to live pay cheque to pay cheque, to go out drinking, to think about new shoes for long periods of time, to focus on the trivial because the truth is too much. You don't have this choice; it's missing from your DNA, and probably for a very good reason - because the world needs it. I need it. Leslie needs it and Max needs it.

It's not like 200,000 words magically appeared on your blog, you put them there. Each and every one. Your truth as it was at that exact moment in time. And that's probably only a fraction of the words that were swimming around in your brain. There are no words that will ever make it OK that Max died. There are however words inside you that will help, words that will heal, that will inspire, that will mean something to you and to other people who find themselves wanting or having to read them. No one would have wished this in you or on anyone else; I'm not saying that Max's death has made you more of a writer, because you were already a writer. What this tragedy has done is make you fierce. It has made you, like all mothers fiercely protective of your children, and I know that you will remain that way forever. While there is nothing you can do to bring Max back, I think what you are doing and should continue to do is be truthful with yourself and the world about Max. If it's too confronting for people or they think they can have an opinion about how you feel or should behave then they can just fuck off.

Every good piece of writing should end with profanity, don't you think?

All my love and continued admiration.

Kate xx

What to do when there's nothing left to do?

A little while I ago I wrote about some of the reasons why I write here, as I was thinking about approaching my 200th post written in memory of Max. I have reached the magical number. I've exceeded it. And I don't seem to have any desire to slow down with the writing, to wind it back in order to focus on other things. I still need this place. I think I will always need it. It gives me something tangible on which to capture thoughts and feelings of my little boy that I would not otherwise have.

I've heard other grieving mothers talking about the way they 'mother' their lost babies; how the desire to still do things for them is so very strong. There aren't very many ways that we can do this. Those of us whose babies are now ashes don't have a grave to tend, and there's only so much tending of a static underground space you can do, even if you've got one, I guess. As the months pass the list of 'administrative' tasks that we must take care of dwindles. The birth is registered. The death is too. The thank you cards are written. The memory box is created. The photos are framed. The flowers are planted. The question of what else there is left to do is a very distressing one, when you realise that the answer is 'not much'. And so, many of us write. We can't cuddle, or bathe, or dress, our babies, but we can write to them and for them, and in honour of them.

Yesterday, my dearest of dear friends, Kate, came with me to take Max's cremation urn to the funeral home to be filled with his ashes. This is my last job; the last thing on my list of things to do for Max. There's probably a reason it's taken us seven months to get to this point. Partly it's because we are perfectionist procrastinators and no urn would do, and no time seemed like the right time for doing. Partly, though, I was hesitant to have my list completed. If the last thing is done, what the hell do I do with my life then? What do I think about? What do I plan for? Because it's sure as hell none of the things I want to be thinking about or planning for. I want to be here on the couch with my little baby. I want to be taking him for walks in his pram, which is gathering dust in the cupboard, and which I cannot bear to look at. It stinks of potential. It stinks of waste. It's never been used and yet I want to throw it away. I wouldn't mind kicking it a bit, either. I don't care that it cost $500. It makes me feel sick, that pram. It makes me feel sick.

Anyway, back in that post I mentioned, when this blog was still the private domain of a few close family and friends, I asked those who were reading to contribute something small to this special place to tell me what it meant to them, or what they found here, or what Max meant to them. Kate wrote me a very beautiful letter, which made me cry. That's not unusual as I am the type of person who cries at the drop of a hat at the best of times, let alone at the worst. I am very proud to share it with you. I am very proud to have Kate as part of my family, for she is more than a friend. She is one of the only people on earth who can bear witness to Max's life. She was there when he was born. She saw him in all of his beauty and grace. And she has been there for me since, in every way.

Thank you, Kate, for delving into your heart and digging out these gems, which I will treasure forever. I love you so much.

A letter to the lovely bloggers

Since the lovely Sally recently mentioned my blog in one of her posts, my little place here has been overwhelmed with visitors. I'm both touched and mortified. Touched that people from all around the world could be bothered coming and wading through my thousands of words of grief, love, tribute, sorrow, anger, pain, joy and wonder. I'm mortified for the exact same reason, because you're reading my thousands of words of grief, love, tribute, sorrow, anger, pain, joy and wonder, which have fallen onto the page straight from my heart, with no filter, no editing, no sense of 'maybe I shouldn't write that', 'what if I offend someone', 'what if I hurt someone or they hurt me?' It's all here. I'm all here. I feel both validated and exposed by opening up this blog. It's a weird position to be in.

The truth is, I've written so much over the last seven months that I don't even remember half of it, so I don't even really know what you're reading on here, or whether the things I've written are true, or were ever true, of what I've thought and felt since Max died. I don't want to know half the things I've written, it makes me sick to go over past posts. Every time I've tried I end up just cringing, like you do when you have to listen to your own voice on your answering machine message. It's excruciating, isn't it?

Words are funny. I'm never short of them, but still I feel like I can't quite communicate what it is I want to. That I can't make the words reflect what I mean in my heart. And if I, whose life has been working with words in one shape or another, can't find the words, then who can? I keep thinking of all the people out there who can't so easily express their emotions. If I didn't have this outlet my brain would have exploded from thoughts and emotions by now. Where do your thoughts and emotions go if you can't get them out? That frightens me, to have them all locked up inside, boiling away and threatening to burst your seams at any given moment. 

Then again, I'm sure some people can't believe how easily I express myself, and are probably mortified by the depth and intimacy of things I reveal to the world. It's just who I am. I'm like this in real life, too. I'm always just open. Sometimes people take advantage of that and stick hot pokers in, but mostly people seem to really value it as a quality, and in turn feel like they can open up around me. It's a blessing and a curse, as most valuable things in life are, I guess.

Thank you, every one of you, for coming here to sit and remember Max with me for a while. For no matter what else I may bang on about on here, philosophies, psychologies, politics, whatever, that's what this place really is, a place to remember Max. All the rest is just me thinking and pondering things out loud, and expressing the conflicting range of feelings I now live with every day. Sorrow is joy, joy is anger, anger is love, love is sadness - they're all the same thing to me now. All those distinct categories have blended into one. When I write of something I'm angry about, it's probably actually fear doing the talking. When I write of something that has made me sad, it's probably actually anger. How can I expect you to tell the difference if I can't? Well, I don't know. Just know that everything here is exactly as it seems, and not what it seems at all, all at the same time. 

I visit, and have visited in recent days, many of your blogs. I could write a comment on every single post I've read. So many of your words resonate with me. So much so, that I have this overwhelming desire to eat them all up, to ingest them, so that I can keep them inside, within easy reach. What I find interesting, and challenging, is the diversity of this community I've found myself apart of. We all have differing opinions and beliefs on really big questions - like why do babies die? Where do they go when they die? Will we ever see them again in some form of afterlife? Many blogs I've read are written lovingly by deeply religious people, or by people whose other philosophies differ so profoundly by mine. I'm not offended by this, I'm interested in the ways our journeys differ, and, sometimes, are exactly the same, despite our many backgrounds. I feel the need to offer some kind of disclaimer that I hope that no one will be offended by my views either, which are, after all, tied up with the insane ramblings of a desperate, grieving mother. No one in their right mind should listen to those pearls of wisdom, so take everything I say about anything with a grain of salt.* After all, as Max's death taught me, I KNOW NOTHING AT ALL! 

* except things I write in capitals. If I say something in uppercase then you can trust that I really mean it, OK?

Thank you all for coming. I hope to learn more about all of you as we share this completely unenviable journey.

 

Where to from here?

Seven months, two weeks, and two days ago, my beloved, longed-for baby died. I left him in his hospital crib, with a kiss upon his cool lips, to be wheeled away by a stranger who did not love him as I did and who could not have possibly tended to him as his mother should have had the chance to.

Not long after that, I came here. I made this space on the world wide web where my little son could be celebrated, loved, remembered and mourned. I did not know how much I would need this space for the overwhelming flow of thoughts and emotions that spilled, and continue to spill from me. I needed it a lot. I don't know how I would have survived without this outlet. There's only so much talk therapy a girl can afford.

At the time I also did not know that there were other women like me doing the exact same thing all over the internet. I certainly searched for them in the first vile days after my baby was taken from me. They were invisible then, but slowly I've discovered other bereaved mums pouring their hearts out, too. I stumbled across one blog that resonated with me, and I followed its links to another, and then another, and then one more. There's a baby loss community out there and I've been watching it from the sidelines, silently. For even I don't know what to say to those who have suffered my fate. I am but a stranger, leaving strange words and empty platitudes on their pages. No matter my warm and genuine intent, I always feel like a stranger who has stumbled somewhere she is not meant to be, looking upon the innermost recesses of a person's heart and soul.

I desperately want to be part of that community. I want to offer my story and I want to be there to listen to the stories of others. I want to connect, I want to participate, I want to grow and learn, I don't want to be alone anymore.

The fallout of a friendship back in March, as a result of a public expression of my grief, regret and sorrow, sent me into hiding. Putting myself out there like that left me feeling very much under threat. Whilst the majority of people who had an 'opinion' on my grief were supportive, and other bereaved parents thankful that I had written such an honest piece, a couple of others, who knew the friend in question, offered unduly harsh personal attacks, saying that my nasty, evil true colours shone, well, evil-ly, I guess, in that piece. Their opinions didn't count and I know their wilful misreading of my piece was just that - a misreading. But my sense of safety and sanity did count. I was too vulnerable to ignore those voices as just background noise and I still wasn't sure what I thought or felt about anything I had written. That piece of writing was straight from the deep recesses of a grieving heart.

Given my chance again I might not write that piece in quite the same way. Given the chance, I know those feelings of unfairness and blind, seething pain at the birth of my friend's baby would have passed. As my psychiatrist said so wisely, that piece documented the beginning of a story. My friend's inability to sit with me through that messiness meant that I would never get to come out the other side of that story where I would realise that her baby was not Max, and I could develop a relationship with him, and his mother, that was apart from the loss he initially signified for me.

I didn't know how fearfully offended people are by emotional honesty and by the many faces of grief itself back then. Now, fortunately or unfortunately, I do. Few people outside the baby loss community want to hear the cries of rage, disbelief and sorrow wailed, and sometimes spat, by the grieving mother.

My closest friends and family do. Even if it is uncomfortable to see me suffer, even if I sometimes offend or hurt them by what is currently my very black and white view of the world, they want to come to this space and sit with me. It's all they can do. It's all I want them to do.

I have trusted a handful of people to come here and bear witness to my experience and to Max's life. By opening myself to them, some of those people who weren't close friends before, have become so. This blog has also kept the lines of communication open to those who were already closest to me, during times when I did not feel like talking but wanted them to know how I was. Some friends I would previously have considered some of my closest don't even know about this blog. I don't know how I decided who I could 'trust' here. It wasn't any conscious decision I made, I just had a feeling that some people would 'get' it, and wouldn't feel the need to have an opinion or a reaction to how I feel or what I write. I was right with that feeling. I was spot on.

This blog has been private since those few days I felt so threatened by people's reactions to my grief. I hid myself away like a frightened animal. I deleted my Facebook account. I completely withdrew. I haven't regretted that. My opinion of Facebook remains, at present, that I can do without it. But I want to connect with those who have been here, and those who unfortunately will find themselves in my place in the future. I don't want this to be a static space, a monologue. I want it to be a conversation about how we live with loss. Or, just, how we live, which I know now to be the exact same thing. 


I know that this blog won't always be solely a place of sorrow. It will grow and change as I do, as those who have been following from the beginning will know that it has already done so. But it will always be a place for me to find Max - to think of him, to love him, to mourn him, as I will do all the days of my life. 


You will notice this blog has a new address - http://mydearestinfant.blogspot.com.au - for that's what Max is, and what he always will be. My dearest, darling, first-born infant, for whom my heart longs. 

It's been seven months, two weeks, and two days since I lost him. But there are so many days to come. I'd like to invite you to stay with me. And please, let me know when you're here. I've enabled comments so that everyone with an OpenID can leave a note, or simply tell me that they've dropped by.

Thank you for reading. Thank you for remembering Max. Thank you for bearing witness to my love for my perfect little son, who was taken from me too soon, and who is the first thing I think about in the morning and the last thing I think about at night.

I love you, my darling Max. I love you so much.

From a dad's perspective

It is rare to get a glimpse into a father's perspective on a child who has died. Far too rare.

I was sent a link to this story by a friend today and I was so pleased to read it. Not pleased that this little baby died, of course, never that, but pleased his dad felt willing and able to share his perfect baby son with the world so that we can open more conversations about what is still a subject shrouded in so much secrecy and misinformation.

It is hard to do, to open yourself up to the world when you are at your most raw and wounded. It is even harder to share the story of your baby with an unknowing public when your first instinct is to protect your baby and yourself against potentially judging, misunderstanding eyes. 

So thank you, Michael, for sharing yourself, your beloved son Patrick, and your dear wife Pip with all of us. I am so sorry you have suffered such an unimaginable loss. You have done an important and necessary thing, and have helped others and kept your son's memory alive in doing so. I wish you all the very best with your fundraising efforts and in running the challenging City 2 Surf event in Sydney. You are an inspiration.

Incredibly, Michael has been able to raise over $21,000 for the Stillbirth Foundation. If you can help, you can find Michael's fundraising page here.

A surprising twist to our rose's winter blooms

I wrote a little while ago about Max's Camelia plant, which bloomed on his six month anniversary, much to mine and his daddy's wonder and surprise. It is still flowering beautifully, though the flowers are delicate and easily blown off with the wind and rain. We've given it some shelter on our doorstep and we hope to see it growing more delicate pink flowers. I've seen some magnificent, established Camelias in people's gardens lately and they always catch my eye.

What we didn't expect was for our rose to bloom again in the middle of winter! We were getting ready to prune it, as we'd been told to do by the gardening experts, when we noticed that it seemed to be budding again. Lots of new buds grew full and in the last week two of them have bloomed into the most gigantic, spectacular roses! If this was not surprising enough, the roses that bloomed are pink, when in Summer they were white!

The mysterious dusky pink bloom

As neither Leslie nor I have green thumbs, we are at a loss to explain this second bloom or change of colour, but we are enjoying looking at the flowers while we can.

If anyone can offer an explanation as to this strange and wonderful phenomenon, we'd love to hear it! In the meantime, enjoy these lovely photos of Max's very healthy rose bush.

Flu shot reduces premature birth risk?

I feel like I know everything there is to know about preterm labour and birth. It's not very helpful after the fact, but I gather the facts as obsessively as a squirrel gathers nuts for the winter in the hope that forewarned will be forearmed next time.

Ominous words, 'next time'. I don't know if there will be another pregnancy, another baby. It feels foolish to hope. And yet, I still do, even though sometimes I feel that Max was my only chance at motherhood and that somehow, I screwed it up. Max's death is not something I can undo even if I did know how or why it happened. But the thought that I might be able to do something differently to 'beat the odds' or something like that, stays with me. Though I now know, more than anyone, how little control I have over anything that happens to me, or over life and death, I still find myself looking for ways that I can be just a little bit more in control next time, as if I've learned no lesson at all. It's infuriating, but I guess we're all wired that way, or at least I am.

During my foraging for information I usually come up with the same kinds of stuff. There's the rare story of a 'miracle' baby who has survived birth at 23 weeks which the media have pounced all over. There are the same risk factors touted on websites over and over again, none of which I have - smoking, obesity, low-socio-economic status. There are the hopeful medical journals that document treatments that seem to prolong pregnancy and prevent premature birth, though usually they're still not quite sure how. These include the use of progesterone supplements from 18 weeks, fortnightly testing of fetal fibronectin, a chemical marker, which if present in the cervix is the earliest sign they have that the body is preparing for labour, regular ultrasounds, bed rest from 20 weeks onwards, the administering of oral antibiotics and steroid shots throughout the pregnancy. Hell, I won't even need an obstetrician at this rate. 


What I'm trying to say is, it's unusual to come across something new that I haven't read before. This news article, published in 2011, is brief, but thought-provoking, as I have never read of the connection between flu vaccination and lesser rates of premature birth before. I'm yet to follow up the original research, but here is the story:

It's my party and I'll cry if I want to

Saturday was my birthday. I was born on 7th July. I'm a Cancerian, with a Leo moon, for those interested in my astrological credentials. This year I turned 34 years old. It was supposed to be my first birthday as a mum. I guess it still is. Except I have no child to show for it.

On my birthday last year I was newly pregnant, although I didn't know it until a few days later. I'd been tired in a way I'd never experienced before, and was having all of these weird burning feelings in my breasts, so I had my suspicions. Even though we'd been trying, the news was still an incredible shock for me. I couldn't believe it was real. I couldn't believe that it was happening to me. I couldn't believe it had been that easy.

Turn the clock forward one year and that time feels like a dream. Some days I can barely remember or believe that I was ever pregnant, or that there ever was a baby. My current reality is so far from how I imagined it. I don't know how I found myself here. I don't recognise who I am, or where I am, and worse still, I don't know the way from here. I'm only feeling my way forward, aware that I could fall off any number of unseen, unknown ledges, at any time. I feel untethered. My anchor is gone and I am adrift.

What does it mean to be 34? To me, right now, this question is tied inextricably the question of what it means to be 34 and childless. I never wanted to be an older mum,  but I'd now sure as hell prefer it to being a bereaved mum. I was impatient the first time around, but Leslie and I did the sensible thing of trying to get our lives in order before we embarked on that road, so we waited until what seemed like the perfect time. It was the perfect time - we'd just returned from an amazing European holiday and bought our first house. But someone or something decreed that we would not enjoy the trifecta of our longed-for baby too. Sometimes I try to make sense of what happened to us by thinking we had too many good things happen, and that it was our turn for a bad thing, but then I look around and see so many 'bad' people receiving nothing but good fortune and reward for little effort. No matter which way you turn it or look at it, what happened to Max seems so senseless. So unnecessary. Such a waste. We did not deserve to lose him. He did not deserve to die.

On my birthday I could not help but reflect on how different our lives were at the same time last year. I also could not help but look to the future with fear and uncertainty. I've read one too many magazine article about declining fertility and rising risk factors for things going wrong as women approach their mid thirties. I worry that I won't be able to get pregnant again; that Max was a miraculous one-off that can never be repeated. I worry what will happen if I do get pregnant again. Not just how I will cope amid unimaginable fear and anxiety, but I worry in very practical terms too. What if that baby dies? How many more times do I have to do this to bring a baby home to stay? The months tick on. There's no new baby in sight. I don't want my choices taken away from me because I'm on the wrong side of 35 as I've been ready for this for so long. So long.

Something else I couldn't get off my mind? The fact that my child will never experience a birthday. Never. He will never awaken to birthday kisses on his sweet face, or presents beside his bed. He had a day of birth, and we are so glad he was born, but that day will never be one of true celebration, for it is so overshadowed by his death that came so closely on the tail of it. To parents organising jumping castles and trying to outdo the other school mums when it comes to organising unforgettable birthday parties? Scrap the organisation and spend time marvelling at how lucky you are to get to spend your child's birthday with them. Not everyone gets that. Some people don't even get close to experiencing that kind of privilege.

My birthday wasn't all doom and gloom. I had a rocky morning, but a lovely afternoon spent with a few close friends who came over for afternoon tea, bringing wonderful company, yummy treats and thoughtful gifts. It was one of the nicest afternoons I've had in ages, and for once, I invited just those whose company I was sure to enjoy. No more of the 'I should invite X or Y' for me. From now on it's just about the people who enrich my life. I've no time or energy for anyone else. Those who were there absolutely made my day. I am so lucky to know so many wonderful, kind, witty and intelligent women who bring so much to my life.

My birthday afternoon tea spread

I was also lucky to have my mum visiting for the weekend, especially for the occasion. She took me shopping and for the first time in months I got some new clothes that made me feel good. I had my hair cut. I felt a bit new and fresh. I was glad for it. I was glad to have her. I am glad for many things. I am. But I just want my baby back. I want him so badly that I can't even express it anymore, except in lethargic tears and sighs. The screaming, begging days don't come often anymore, and often I don't even realise I'm crying a lot of the time until my tears are cascading off my face. I just want Max back. It was my official birthday wish. I wished him back in my arms whilst cutting my birthday cake. I wished to rewind one year to the day to start again with the beginnings of my baby stirring inside me.

I wish, I hope, and I cry. Another milestone passes, and a year begins again.

Where I've been (part two)

I spent last week in Canberra, which is the main reason I haven't blogged anything in a while. Yes, they do have the internet in Canberra, so that's not entirely the reason. It's just I didn't really feel like writing while I was there. I was trying to live in the moment and enjoy the precious time I had to spend with Anika and Sasha, who I went especially to visit.

I think it was a good decision not to blog. I think I would have written some sad stuff, late at night, when I was missing home and thinking of how different my trip would have been if I'd had Max with me, which at this time of the year I should have. If he'd been born when he was expected, he should be three months old right now. The sad stuff would not have accurately reflected how I felt to be visiting my dear ones. I was so happy to see them, and so surprised and delighted to see how much my Sasha has grown and matured. I felt like I got to know her again, as the little person she is becoming, as opposed to the baby she was. I think I coped pretty well, but it was a hard trip - my first away from home since Max was born and died. My first time away from Leslie since our lives changed so unexpectedly. I felt OK during the days, but dismally upset at night. It happens like that sometimes. The day takes all you've got and you're scraping the bottom of the barrel of sanity later that night.

I'm very conscious these days that I'm not a 'normal' person to be around anymore. Maybe I will never again be the person I was. I don't know what my friends think about the ways in which I've changed - whether they've noticed or whether I'm the only one that notices. I'm highly emotional, prone to moody bouts of sad and silent reflection, and I tire easily. I could probably say that these things were always true of me, but they do feel different somehow, perhaps magnified. I don't take joy in as many small things as I used to. Sometimes I think I just can't be bothered talking about any of the things I used to talk about or to be interested in any of the things I used to like. You know, just sitting around and chatting about my every thought, or whatever comes into my head. I'm guessing part of this is because I am so often thinking sad and horrible things. It's not that people don't want to hear them, as I'm so lucky to have for my closest friends people who can, and do, listen without judgement. It's just that I feel that it is too much to ask them to listen to the same stuff over and over and over again. I'm embarrassed that I have nothing else to contribute. I don't want the only conversation I'm capable of having to be about Max, or the gaping hole he has left in my life, or about how the world doesn't make any sense to me anymore. But a lot of the time that's just where I am. A lot of the time I spend at home is me sitting on the couch and literally staring at the wall, sighing. I'm sure this doesn't make me a very charismatic or enjoyable house guest, but I tried to do my best. 

Anika and Sasha did extremely well to sit with me through moments of extreme sensitivity and silence. Anika's always been good like that. She's like me in many ways, just happy to have the person she loves in the room, whether they're talking or doing their own thing or not. At least I hope she was, as I don't feel like I brought much fun with me! The most joyous parts of the trip were spent reading stories to Sasha and joining in her many and varied conversations, and on the long walks I took with Anika, which were good for me in so many ways. As always seems to be the case lately, I don't know where the days went. We went shopping a few times, went out for tea a few times, and then it seemed time to come home. Luckily I will get to see them again next month when they come to Melbourne for Anika's graduation, which will be a lovely, happy, exciting occasion, that I'm saving up all of my positive feelings for.

It's late tonight, and I'm tired, and a bit sensitive about it being my birthday tomorrow, so I won't go into the details of the whole trip. After all, at least two of the most important people in my life were already there! They don't need a recap! I will say that I took the train to Canberra, and I will say that I will NEVER DO THAT AGAIN! Stories from the XPT from Melbourne to Sydney could keep me in blog posts for at least the next month. Hell, if I rode it often enough I reckon I could dedicate a separate blog for the plethora of fucking weird and disturbing shit I saw and heard!

A very grown-up looking Sasha:

Where I've been (part one)

This has been the longest break from blogging that I've had since I started here so many months ago. I didn't mean to take a break at all, but I've had a very busy couple of weeks, probably the busiest I've had in months. I missed signing into this space, but I've also had a lot of time to think, for better and worse. Not writing down my every thought and feeling for almost two weeks has shown me how transient those thoughts and feelings often are. I've had moments of despair during this time, but also moments of thorough enjoyment. Each has passed as quickly as the other, and, as the practice of mindfulness teaches us, this is how it should always be when we simply let things be - when we feel what we feel, and think what we think, without attaching layers of extra 'stuff' to those thoughts and feelings - past experiences, patterns of self-doubt, a running interior commentary on what every thought and feeling must 'mean' or 'represent'.

1) My natural brain - 2) The 'mindful' brain!

Not documenting the constant flow of those thoughts and feelings is much less confronting than doing so - the feelings come and go without any evidence they ever existed. For example, I'm having a good day today. On such a day it is easy for me to forget that a couple of days ago I was really low. For many people this would be the ideal situation, for who wants to remember and reflect on the days where they felt that maybe life wasn't worth living? Well, I guess, I do. Not because I'm morbid, although I guess I probably am right now. But because I know how much I learn from seeing my own internal processes cascade past me on this blog. I write about a horrible feeling, convinced this is the worst feeling I've ever had and that I can't possibly have ever felt this bad before in the whole history of forever. This spirals. I go downhill fast, thinking that there is no point to anything as I am always going to feel like this, and that I always have felt like this. Looking at it objectively, of course that's not true. But depression takes away your ability to look outside of yourself. It tells you things that are not true, but that have just enough of the truth in them to make you truly doubt yourself.

My brain, though sometimes of extraordinary things, often uses its powers of imagination and creativity against me. When I have a low day, as you do when you have depression, and as you do even more so when you have a dead baby as the icing on that cake, my brain tells me a lot of really bogus things. Firstly, it tells me that something is terribly, terribly wrong if I feel sad or despondent or anxious or sad. 'Something bad is about to happen!' it shouts at me. 'React! React!' And so, my body, obeying commands from Captain Neutron in charge, reacts. I feel sick, my heart races, I cry, I run to my bed and decree that I simply cannot leave the house today for I have been told that Something Bad is about to happen over which I have absolutely no control. It's not safe out there. I must retreat. And so, as the obedient servant I am, I do.

As the booming voice of Captain Neutron starts to quieten (he's done his job, he's kept me from the danger zone, so he lets down his guard), I tell him that I think he's maybe overreacted, and that perhaps there was no threat after all. He doesn't like that. He gets hysterical again. 'But remember all the times you were wrong!' he says. Then he shows me a slideshow. A 3D, digital quality slideshow of everything bad that has ever happened to me; of everything bad I could ever imagine having in the future. The soundtrack to this slideshow is the voice of everyone who has ever hurt me; who has ever made me feel unsafe, with a refrain sampling the best bits of my own self-criticism. It's on constant replay. All of this happens in a split second, and despite years spent in a chair opposite the best therapists, all of this can still happen in a split second and take me down before I have a chance to employ the weapons I have been taught, and that I have practiced.

I'm not saying that writing in this blog the last few months have cured my depression. But being able to read over my posts and see documented this carousel of moods - to notice them, write them out, and then let them float away, has been a really powerful thing to me, far apart from anything specific I have expressed about Max or grief. I can call up one post and see for myself a desolate space I was in. I can call up another that I wrote immediately after that and see that this particular feeling passed. It comes up, it goes away. It comes up a million times, in a million different ways, and maybe it will forever, but I always come out the other side. I have some physical evidence of that progress in the 200 entries I've thrown onto these pages. There is always some reprieve, no matter how short, no matter how imperfect.

And so, this blog has become more than a blog about my son, though it will always, always be a place where I find him, and talk to him, and honour him. It's just that it is now also my record. Every one of these posts is my proof that everything is going to be OK. That even when everything is not OK, that I will be OK. Maybe I won't be OK in that particular moment. But I will be OK in the one that comes next, or the one that comes after that. And that's something. Despite everything I'm enduring, that's hope.