Max's daddy

Leslie as a little boy. I wonder if this is what little Max would have grown to look like? If so, he would have been so gorgeous. I love these photos so much.

20 Things every Angel Mum wants you to know

20 Things every Angel Mum wants you to know
I completely understand that a lot of people do not know what to say to someone who has just lost a child. There are no words that will make it better or make the pain go away. After all, it’s an unimaginable pain and one that most don’t want to even contemplate let alone try and empathise with. This wish list was obviously put together by someone who has been where I have been as it expresses so many of the same needs and feelings as I’ve had as I’ve not only dealt with Max’s death, but dealt with people’s many and varied reactions to it and to me.

Some rare and wonderful people have said the most perfect things that have touched my heart. I know many others have tried their very best, and even if their responses have unintentionally hurt me or made me angry (such as comments about Max’s death being god’s will, or god needing him more, or how lucky I am to now have an angel looking down on me), I’ve known that their sentiments are intended to spare me pain, even if they’ve missed the mark.

Others still have said nothing, and this I find this the hardest to deal with of all. I know it’s hard, but it can’t possibly be as hard to say ‘I’m sorry for your loss’ or ‘I don’t know what to say’ as it is for me to have to interact with people who will not acknowledge my son or my pain and continue on as if life has not changed. As one woman I know has said, “friends that chose to stick their head rather than open their hearts to be there for me, well those friendships have fallen apart and that has broken my heart just a little further in a time when it was already shattered.”

For these reasons, this list really resonated with me. I feel like since the funeral no one has really wanted to talk about Max or what happened, even though I have tried so hard to make them feel comfortable to do so because I need and want to talk about it. I feel a bit like I’m that weird woman that people don’t want to be around because she constantly talks about her dead baby and freaks them out, scares them, or confronts them with reminders of their own or their children’s mortality.

In short, if you are reading this blog because you care about me, please read this list and know that you can help me just by being aware of these few small things that can make so much difference.

Don't wipe your tears away

Cameron M. Semmens - Through the Lover’s Window

don’t wipe your tears away
don’t smother them with tissues
let them streak and splash and soak in

wear them like jewels

don’t try to blink your tears away
let them sit in your eyes

let them sit in your eyes
and you will see the ocean

let them spill out naturally
waterfalling down your face
til they lap the shores of your lips

lick them
and you will taste the ocean!

but you won’t sink
you won’t drown

these tears will keep you afloat

lie back
lie right back
and let the trickling tears
tickle your ears

What I'm going through

A lot of people keep saying to me that they can’t imagine what I’m going through. There certainly aren’t a lot of words to describe the pain, even for someone like me, and I’m having difficulty explaining it. The beautiful images in this video are perhaps a powerful way to show you the thousand faces of love and grief I’ve experienced since my baby was born. I watched it many times today. The lovely people at TLC, who made this video, have been in touch with me and offered me much comfort and support.

'One morn I left him in his bed'

ELIZABETH DREW BARSTOW STODDARD

One morn I left him in his bed;
A moment after some one said,
‘Your child is dying – he is dead.’

We made him ready for his rest,
Flowers in his hair, and on his breast
His little hands together prest.

We sailed by night across the sea;

So, floating from the world were we,
Apart from sympathy, we Three.

The wild sea moaned, the black clouds spread
Moving shadows on its bed,
But one of us lay midship dead.

I saw his coffin sliding down
The yellow sand in yonder town,
Where I put on my sorrow’s crown.

And we returned; in this drear place
Never to see him face to face,
I thrust aside the living race.

Mothers, who mourn with me today,
Oh, understand me, when I say,
I cannot weep, I cannot pray;

I gaze upon a hidden store,
His books, his toys, the clothes he wore,
And cry, ‘Once more, to me, once more!’

Then take, from me, this simple verse,
That you may know what I rehearse—
A grief – your and my Universe!

Hear my soul speak

Hear my soul speak:
The very instant that I saw you, did
My heart fly to your service.

William Shakespeare - The Tempest.

You will not grow

You will not grow if you sit in a beautiful flower garden, but you will grow if you are sick, if you are in pain, if you experience losses, and if you do not put your head in the sand, but take the pain as a gift to you with a very, very specific purpose.

Elisabeth Kubler-Ross

A letter to my baby

Leslie and I spent months and months - in fact a large part of our whole relationship - talking about having a baby and planning our lives so we would be in a position to do so. In early 2011 we spent two months holidaying in Europe where we planned to start trying to get pregnant. We had such an amazing time and we felt like our life was coming together just as we’d dreamed it would. I wished mightily for my little baby to come to me quickly and at Notre Dame in Paris I lit a candle for it’s little spirit to tell it I was ready. I spent so much of our idle time, on planes, trains and buses, thinking positive pregnancy thoughts. One day, on a fast train in France, I spent the journey writing my future baby the letter you will find below. I did not get pregnant until a couple of months after this, but my hopes and wishes for my baby remained (and remain still) the same. This letter was hard for me to re-read after I lost Max as it made me realise the depths of my feelings for this baby boy had started very long ago and were invested with so much longing and love. Here is what I wrote that day on the TGV.

My dear baby, 


I am writing you this letter to tell you how much I can’t wait to meet you, and how long I’ve waited for you to come. I’ve thought of you and imagined you into being for so many months that it feels as if you are already real even though you are at this time just a recurring dream; a gentle wish. There are so many people who love you already, and then there’s me, who I hope you’ll choose as your constant friend and most careful protector. 


For as long as I can remember I have imagined a little son or daughter coming to me as though out of thin air; their arrival sparking an unexpected sense of remembering, like we might have met once before, not so far away, in a time that has only just slipped us by. That baby is you, and when I think of you you are tiny and blonde, with long, delicate fingers and a mysterious gaze turned towards the bigger people and the bright things that pass you by. 


You’re a little like me, of course, in your quiet manner and easy disposition. But not too much. You have nothing of my melancholy. You are light and unencumbered by worry, by fear. You are quick to laugh and quick to love. You are a wonderful observer of the world around you, and a passionate participant in all of its wonders. You could be an adventurer with a restless spirit always urging you towards new things, or maybe you’ll be driven from an early age by just one particular longing. Either way, I will do my absolute best to help you follow your star, and I’ll always be there waiting when you come home again. 


A wonderful home I will make for you - warm, welcoming, and full of your things and your spirit (which no doubt you’ll have in abundance). There’ll be animals to share your secrets and stories who’ll be devoted and loyal to you when you feel lonely or misunderstood. There’ll always be books within your reach to take you to whatever place and whatever time you can imagine, and music to afford you an escape from any cares you have upon your little shoulders. There’ll be warm baths and cosy cuddles, and as you grow there will always be room for you to share your home and your family with the friends you’ve carefully chosen - those who make you laugh and bring out your very best. 


I can’t imagine what will be your favourite things to do. Perhaps you’ll surprise me with a penchant for tennis, or with strong shoulders that will lead you to the swimming pool - though no one would then believe you were a child of mine! I’ll leave those things for you to try, though I dearly hope you’ll love to dance and that cultural things afford you pleasure, so that we might share some quiet winter afternoons together, even when you are grown. 


I’d like to think that I have chosen for you a caring, constant father who will adore you, even at your most awkward age and through your strangest interests! I know, right now, that he’s excited to meet you, though he is not quite as impatient as me, who has to learn to wait, to wait, to wait, and to give control of time over to you, for a little while at least, as you learn the funny ways of this world and prepare for your journey into our lives. 


There is a place for you, little baby, when you are ready to come. It’s made out of fresh, soft air that will tenderly cushion your journey and shape itself to your particular form; that will become full with your particular grace - a sense that I hope will soon be as familiar to me as my own breath. Come soon, little one. I can hardly wait to look into your eyes and tell you that you’re home. 


Your mummy xox

Tiny tots

Max in the tiny clothes that were lovingly provided to him by generous volunteers at the hospital.

Help make tiny gowns, booties, cardigans and bonnets for babies like Max

We were so unprepared for Max’s sudden birth that I didn’t even have a change of clothes to leave the hospital in let alone a set of tiny clothes to dress our baby after he was born. Thankfully, the midwives provided us with a beautiful set of handmade clothes for our little boy that had been donated by generous volunteers. We were absolutely overwhelmed with gratitude as his outfit was so perfect for him. Wearing a little white and blue shirt, tiny booties and the most adorable gumnut hat, we wrapped Max in a hand-knitted blanket and gave him a tiny hand-sewn teddy bear to cuddle. It meant so much. If you’re at all able to knit or sew, it would be so lovely if you could contribute some of these items in Max’s honour. The Miracle Babies Foundation are one place where I’ve found patterns for tiny clothes, but I’m sure there are many other organisations that also provide clothes to maternity hospitals and NICU’s.

Miracle workers

Miracle workers

An amazing specialist in maternal/foetal medicine at the Mercy Hospital for Women in Heidelberg.

A mother's tale of premature twins

A mother's tale of premature twins

This article, published in Britain’s The Observer in 2009, charts the experience of a woman who gave birth to extremely premature twins and the conflict that occurred between her wishes and the advice of medical staff, raising the question of who has the right to make treatment decisions in this kind of situation.

Article asks 'are we always right to save premature babies?'

Article asks 'are we always right to save premature babies?'

I’ve been reading anything I can get my hands on regarding premature labour and other babies born at 23 weeks, the so-called ‘threshold of viability’, as Max was. I’ll post anything that I find interesting, comforting, distressing or just thought-provoking as a way of tracking the different kinds of stories that are out there.

Back to the land of the living

Today was Leslie’s first day back at work and it felt like this event signified the end of our allocated period of mourning. It’s not that anyone says out aloud that they will tolerate a deviation from your normal affairs for only a specified time after trauma or loss, but you get a strong sense that it’s true nonetheless. There are pragmatic reasons for having to pick yourself up, dust yourself off, and get on with life, I guess. If everyone in the world who was suffering decided to just drop out of society and nurture themselves until such time as they were healed completely, there’d be a whole lot of empty streets and office buildings. There’s also the argument, of course, that activity in itself helps to heal grief and sorrow - that the quicker you get back to ‘normal’ the less pain you will feel.

Still, there are a number of ways in which this is cruel. Firstly, I deeply resent the allocation of an allotted bereavement time by workplaces, especially when this time is dismally short. I believe it’s normal to be allocated only a couple of days of bereavement leave in most corporations, which just seems offensive to me. Others I’ve heard will offer more leave ‘at your manager’s discretion’. Well, this is fine if you have a compassionate boss who exhibits evidence of human feeling, but what if your manager is an unfeeling ass-bag, or who is just not willing to fight for an extension of the policy on your behalf?

Leslie has been lucky in that he was able to spend three weeks at home after I had Max. This is only because he was able to take two weeks ‘parenting’ leave also, because I gave birth to a live baby and the policy did not state this right was to be revoked upon the death of the baby. Even then, there was some confusion as to what he was entitled to. Is it not the job of HR professionals to iron these things out? I feel his work should have contacted him to tell him not to worry and that they would sort it out rather than making him chase it up himself. The last thing anyone wants to do when they are trying to organise the funeral of their baby is to worry about whether they have enough time off work to attend it.

Secondly, I resent that anyone gets to decide what is ‘enough’ time before we are expected to resume our old lives. At the moment, for example, it is very difficult for us to see or be around other small babies - every one of them is a stinging reminder of what we have lost and may never have again. People have been understanding and sensitive to this over the last couple of weeks, but I can’t help but worry how long it will be before we begin to be considered selfish for not attending other people’s baby showers, christenings or first birthday parties. How long before I’m expected to greet the news of friends babies with joy and happiness instead of bitter anger and jealousy?

It feels like forever will not be enough time for us to adjust to life without our baby; to let go of all the dreams and plans we had for our family’s future. I don’t believe we will ever resume our ‘old’ lives. How could we when we have changed, irrevocably, as people, and as a couple? Though I know there will come a time when our grief is not so raw, normal life for us can never again really be ‘normal’. I feel that life will be forever divided into two epochs - Before Max and After Max. On the one hand I would never want to go back to Before Max as I would not take back a second of the time I spent with him, nor the love he gave me. At the same time, life After Max seems like too much to bear in the long term. 40 or 50 more years of living without him? How do we manage that?

Despite my fears of being alone without Les today, it’s almost 6pm and I’m surprised to discover I’ve survived. I met up with a couple of friends - Leah and Yvette - for brunch, which I really enjoyed. We went to Porgie and Mr Jones in Hawthorn and listened to blissfully innocent Year 12 students talk animatedly about their ATAR scores and how their lives would never be the same again because they did/did not get the score they wanted. We watched Leah’s little girl experience a moment of the purest joy upon discovering that she’d be getting peanut butter on toast for brunch. We teased Yvette for ordering weak lattes because she can’t handle a full shot of espresso in one go. And we chatted about our plans for Christmas and the holidays, whose madness we agreed was about to descend upon us whether we were ready for it or not. In short, I did some living, whether I liked the idea or not.

Wishing on a star

Though the postman woke me up at 8am this morning by ringing my doorbell, he left a very special package on my front door step that had me in tears before my day had even begun.

My friend Sharon’s mother, Sue, who I’ve known for many years, and whose family I’ve always been included as part of, had a star named in memory of my darling Max. Inside the huge box from the International Star Registry was a beautiful framed certificate bearing the name of Max’s star, a map of the constellation of Sagittarius in which his star is located, and a heartfelt message from Sue and her children.

The official certificate we get to hang on our wall

This was such a beautiful gesture and I was overwhelmed by her thoughtfulness and creativity in thinking of such a unique way to remember my baby. I am planning on making a little space in our house which will be Max’s, in which I will put his photo and some keepsakes, and where I can sit and think of him. I will hang his star certificate there and picture him floating peacefully through the heavens, illuminated by the brilliant light of his very own star.

A map of the constellation of Sagittarius where Max's star lies
 

Heartfelt message from the Gourlay/Hughes families

The location of Max's special star

And when he shall die

And when he shall die,
Take him and cut him out in little stars,
And he will make the face of heav’n so fine
That all the world will be in love with night
And pay no worship to the garish sun.

Romeo and Juliet (Act 3, Scene 2) - William Shakespeare

12 weeks

My baby boy at 12 weeks, developing perfectly.

Treasures

I have received some beautiful, heartfelt keepsakes in memory of Max and I will treasure each of them forever.

Dear friends, Michael and Ava, told my story to jeweller friends of theirs who created this pendant featuring Max’s initials out of an antique spoon. It was so special to receive something made by true crafts-people who created it with Max’s unique spirit in mind. You can see some of their other beautiful pieces here.

From Michael and Ava

This silver bracelet was sent to me by my oldest friend, Sharon, and is inscribed with Max’s name. It is one of the first things I received after coming home from the hospital, and it meant so much. I will wear it with pride.

From Sharon

This birdie brooch - which people have said is ‘so Janelley’ - was sent to me by Kate’s parents, Sue and Tom. That Max’s life touched other families was such a comfort to me, and was evidence that so many people were thinking of us and feeling our pain. Sue is a master calligrapher, and hand wrote the inscription on the back of the brooch - something that makes it so very special.

From Sue and Tom 

The back of the brooch from Sue and Tom

All that remains

I picked up Max’s ashes from the funeral home today. I’m not sure what I want to say about it. It feels like I should talk about how weird it was, how distressing it felt to carry my son home in a cardboard box. But it wasn’t. Like most of the seemingly-significant moments that have occurred since we lost Max, I handled it much better than I’d imagined. No doubt, in these early days, I’m still protected a little by what I’ve come to know as the zombie effect. Under its spell I’ve been able to keep my eyes open, my head up, the kettle on, the bed made, the cat fed, the Christmas shopping complete all without really feeling a thing.

As I signed the register to acknowledge that I’d collected Max’s remains and checked that it was indeed his name on the container, I did feel, though. What came just wasn’t what I expected. There were the initial tears when I walked into the building and remembered this was where I saw him for the last time. There was nervousness when the lady who met me wasn’t the same one we’d dealt with for the funeral. There was confusion when she asked me if we’d decided what to do with his ashes, suggesting that we might consider placing him inside memorial teddy bear, a plant, or a locket. It didn’t feel traumatic, or significant, or distressing in itself, however. It just felt mundane. But perhaps that’s the wrong word. I mean to say that it just felt like life - or like what life becomes after you realise that you’re not immune from tragedy or suffering as you, until recently, assumed you were.

Here I was in the middle of busy Burgundy Street in Heidelberg, my ears assaulted by whiny carols blasting over the shopping strip’s public address system, dealing with death and its aftermath like it was an every day occurrence. How did this happen? Next door people were lunching. Out the front cars were slowing in the hope of finding a car park so they could duck into Australia Post in the least amount of time possible. I carried Max up the street in quality paper shopping bag - you know the exclusive-looking, waxy kind that you get from clothing stores, with two little handles. No one stopped to observe this procession. No one held my hand. My son and I were just another part of the streetscape; our moment gone as unmarked and unnoticed as any other.

In a way, I guess I’m lucky that I lived 33 innocent, ignorant years before I had to face the fact that death is just a part of life; that people will keep expecting me to go back to work, do the grocery shopping, or return my library books, despite the trauma I have endured. I’ve only just begun to realise that there’s no special dispensation for loss or suffering - at least not a long-term one. People everywhere, all around me, are carrying their own pain, and the world doesn’t stop for them anymore than it has for me. That’s perhaps the cruellest truth I’ve been confronted with yet, and I can’t stop thinking about the unfairness of it.

When people have asked how I’m going lately, I’ve often responded that I feel that I will never be the same again - that I will never know ‘normal’. The reply I expect is fervent denial. ‘No,’ they’d say, ‘time heals all wounds!’ But the reply I get is sad agreement. No, they say, you will never be the same. The pain will remain, always, you’ll just learn to accommodate it and get on with the business of living, whether you want to or not.

I put Max’s ashes under the Christmas tree alongside our other gifts. It seemed as good a place as any for now. I googled ‘infant cremation urns’ and browsed through hundreds of pages of ugly marble receptacles for the departed, where death was dealt with in perhaps the most prosaic form of all: an offer of free shipping for purchases totalling $75 or more.

We have suffered

We have suffered, but we have survived;
We are hurting, but we are enduring.


Ben Van Vechten

What Max might have been like...

What Max might have been like...

I’m not an avid believer in horoscopes, but I must admit I was pleased to discover that I was pregnant with a Pisces child - a fellow water sign who I hoped would be sensitive and creative like me. If Max had lived, though, he would have been a Sagittarian in the end and probably driven his quiet father and I mad with his youthful, extroverted ways (if this website is anything to go by). I know it sounds silly to attach to him a personality based on something as trifling as astrology, but it has dawned on me that those imaginings are all I will ever know of my child, and so I keep looking for things like this to tell me what he might have been like.

Max's things

Since news of my pregnancy broke back in July/August 2011, Max’s bedroom has been filling up with all manner of clothes and toys in preparation for his arrival. His Nanna, Christine, is to thank for much of it. The little suits and toys she kept sending, chosen so lovingly, let me know how excited she was to be a grandmother, and helped me regain my pregnancy excitement after I suffered terribly from hyperemesis (severe morning sickness).

All of these things sit folded neatly in piles - never to be worn by the little boy for whom they were intended; never to be messed up, pulled out of drawers and dragged down the hallway by his chubby little hands. His teddies will never be squeezed or chewed upon or flung across the room in excitement or rage…except by me, perhaps.

I don’t know what to do with any of his things, and I can’t bear to even cast an eye in the direction of his room. My doctor suggested I choose a few things to hang onto as keepsakes and give the rest away, but as I have so few memories of Max to hold onto I want to keep every tiny thing as evidence that he existed; that he was real.

If I could sew all of his little shirts together and make a jumpsuit I could wear every day for the rest of my life I think I would. But it might not go down so well in the workplace, even on ‘smart-casual’ days. In the lunch room I would no longer be known as simply the crazy cat lady with 10,000 cats. I’d be the crazy cat lady who never changed out of her dead baby’s clothes, and that’s a whole other thing altogether.

A few of Max's toys

Darling baby suits

All-in-one baby underwear

Booties, socks and other baby accessories

How I would have loved to do so every day

A letter from Nanna

My darling grandson Max,

You only stayed for a little while and I didn’t get to hold you in my harms as a grandmother should. But you will always be held in my heart. I know you are safe in the arms of your great grandfather, he is waiting for you. You will be safe with him.

I was so looking forward to spoiling you and letting you get away with things Mum and Dad might not have - that’s what grandmothers do.

When I close my eyes I’ll see you playing the piano in your Hawthorn Footy Jumper - that will be my memory of you.

I’ll hang your picture proudly on my wall and I’ll be sure to tell the rest of your family what a brave little man you were.

I don’t know why you couldn’t stay for longer, we needed you so much. I will always love you and there will be a day that I will be able to hold you in my arms.

Sleep peacefully, Max.

Forever in my heart.

Nanna.

White Lady Funerals

White Lady Funerals

Max’s funeral service was handled with care and compassion by Debra at White Lady Funerals in Heidelberg. I rang the day he died, having no idea what to say. Luckily, she did. I managed only one sobbing sentence, but that was enough. With the least amount of effort on my part, she took over the arrangements and just clearly told me what I needed to do. With her help, we organised a service that went exactly as we hoped it would. We could not have asked for anything more.

A Leunig prayer

Let us pray for wisdom. Let us pause from thinking and empty our mind. Let us stop the noise. In the silence let us listen to our heart. The heart which is buried alive. Let us be still and wait and listen carefully. A sound from the deep, from below. A faint cry. A weak tapping. Distant muffled feelings from within. The cry for help.

We shall rescue the entombed heart. We shall bring it to the surface, to the light and the air. We shall nurse it and listen respectfully to its story. The heart’s story of pain and suffocation, of darkness and yearning. We shall help our feelings to live in the sun. Together again we shall find relief and joy.

Michael Leunig, When I Talk to You
(read at Max’s funeral)

A Gift of Hope and Beauty

A dear friend of mine, Britta, wrote this poem for Leslie and I upon hearing of our loss. Its sentiment - that a joyous birth had occurred as well as a tragic death - touched our hearts in a very special way. That in our time of grief we should be congratulated for having brought a darling son into the world had not crossed our minds. The acknowledgement that our baby was born, as well as that he died, was something that I did not know we needed. In offering it, though, Britta gave us room to feel pride and joy in the fact that our long-awaited baby was here in the world, that he lived to fulfil our dream, if only for too short a time.

I am so fortunate to be surrounded by those whose talent and creativity inspires my own. Here is her poem, which she kindly and bravely read for us at Max’s funeral service.

A Gift of Hope and Beauty
By Britta Morrison

A gift of hope and beauty,
of promise and of joy,
of perfection and of innocence,
a gorgeous little boy.

We may not have got to hold you,
or see a tiny smile,
but those who love your parents,
have loved you all the while.

And while you share with angels,
brief memories that you had,
rest assured those left behind
will care for Mum and Dad.

A child of love and beauty,
who saw some hard times through,
things happened sooner than they should
with nothing you could do.

And though it may sound strange,
and we weren’t blessed to know him well,
congratulations on your little man,
dear Leslie and Janelle.

Aunty Kate's Eulogy

Janelley, Leslie and little Max, my dearest friends, my family. Your beautiful son has touched my heart and I will never be the same again. For that, I’ll be forever grateful.

I met Max, I saw his big lips and his enormous flipper-sized feet and that’s a memory I will guard with my life. I also saw my dear friends and their love for each other and for Max. As much as losing Max will make us all here and you both question life, the world, the injustice, the sense, for the hours of Max’s life, he knew no anger. He will only know the love and care you showed him in everything you did.

Please know that everyone here will protect Max and his memory and love him like you both do.

Your friends, your family flew across the country, came despite their own grief to be with you. That’s evidence of how much we care about each of you and for Max. This room is full of the people you can call at 3am, people who can make a Twinings tea and sit with you; people who will take you to the footy even when you might not feel like going. Please take comfort if you can from the people in this room who love you.

Janelley, we will smile again, we will go out for breakfast again (hopefully on Saturday) and we will even laugh again. It won’t mean the pain has faded or the memory is not as clear, it’ll just be that somehow we can and we do. And when that happens, Max will be there too, in our hearts which is where he will live forever.

I promise we will all look after Max’s memory as well as after you and Leslie. We will never stop looking our for you, caring for you or loving you.

Missing you and loving you today until forever our Maxwell Alexander.

Daddy's Eulogy

I want to thank you all for coming to help us mourn little Max’s death and to help us celebrate his life.

Its been a long week for Janelle and I since we lost Max last Friday morning. It is easy to think of all the things that I have lost with Max. I won’t get to teach him how to ride a bike or kick a footy. I won’t get to scare away the monsters under his bed. I won’t get to see him fall in love or even smile. I won’t get to pick him up and give him a cuddle after he scrapes his knee. I won’t get to help him discover himself, the person that he was meant to be. I won’t get to see him become a man.

My only solace is that in his 5 short hours Max was loved, protected and cared for. For every second. He never experienced anger or impatience. He was never alone. Never lonely. He spent his whole life surrounded by people who loved him. We should all be so lucky.

I’m so sorry that so few people got to meet our Max, so I thought you might like to know a bit about him. Kate and Janelle think that Max has my lips and Janelle’s cheekbones. I’ve never been good at that game of picking out features of children from each of the parents, especially not facial features.

He has my feet though, great big paddles - they are like flippers. He isn’t small either. The midwives said before he was born he would probably weigh around 500 grams, but he topped the scales at almost 700. I’ll take credit for the genes and Janelle can take the nurturing and nutrition I reckon. I think he had both our fingers though, long and slender.

The other thing I’m sure of is that he has Janelle’s heart, those of you who know her well will know that Janelle’s heart is pretty much her defining characteristic. The midwives said before he was born that his heart might keep beating for a few hours. Just a few. But Max showed them. Even though he stopped breathing shortly after he was born his heart continued on for five hours. Surely only his mother’s heart could be so big and strong.

I’m so proud of Janelle. Whilst grieving is a very individual and personal thing, everything that I have gone through she goes through as well, but she has a physical side to the experience that I can never appreciate. I’m sure that those of you that know her as well as I do will agree that she is far stronger than she realises. I hope that somewhere down the line she will learn this lesson, maybe Max will be the one to teach her. In spite of all that has happened, I am more in love with her than I ever have been and I cant imagine a life without her.

I have always tried to live my life in such a way that the world is a better place for having had me in it. I don’t claim to be a Fred Hollows or Mother Teresa but I do believe that in my small way I do my part. I wanted to teach Max this philosophy too. I never really cared or thought about what he would do when he grew up, so long as he was happy and made others happy. That would have been good enough for me. The cards have fallen in such a way that Max won’t be able to act as a positive influence on the world. I think that he can still fulfill my dreams for him, but I think I’m going to need all of your help.

I hope that you can all see the love that Janelle and I have for Max and the grief and the anguish for his loss. I want you to embrace and absorb these feelings and take them home with you. Take them home with you and appreciate what you have just that little bit more. You are all good people. Janelle and I wouldn’t have invited you if you weren’t, so I’m sure you already do. I want you to take these feeling home and appreciate and love what you have just that little bit more. Just a little bit. Especially your children, if you are lucky enough to have them.

Thank you.

Mummy's Eulogy

I’m a speechwriter by profession, and until a few days ago the hardest speech I’d ever written was a motivational one for a bunch of Western Bulldog recruits – not least of all because I didn’t, and still don’t, know how many people are even on a football team.

Now, I’m faced with the overwhelming task of finding the words to tell you about my beloved baby, who lived and died as the rest of the world went about their nightly slumber. I want these words to be perfect, as he was, but that seems such an impossible task. So instead, I will just speak with the language of my heart, which is all I have left.

My son, Max Alexander, was delivered in the still of the night, in a moment of the most perfect calm. He was welcomed by his adoring daddy, his doting Aunty Kate, and two amazing midwives, none of whom left his mummy’s side as she experienced hitherto unimaginable fear, pain and uncertainty.

Max had the gentlest of landings onto this earthly plane. I birthed him tenderly, gladly, and humbly in the knowledge that the precious gift I was about to be given would not be mine to keep.

We know how fiercely, how bravely he battled to get to us because he wore the marks and bruises of his journey on his tiny body. The story of his life was written quite literally on his fragile, parchment-like skin, and as we caressed every inch of his body, in awe of what we’d created, his story transferred through our fingertips where it now sits protected inside every molecule of our being – forever a part of us.

We dreamed of a baby and imagined Max into being for so many months that we feel we’ve known him forever. We feel so privileged that he chose us to be his parents – his most careful protectors. My only wish is that I could have kept him safer; that I’d spent more time marvelling at the amazing changes he made to my body as he grew; that like thousands of other elated new mothers I got to take him home where all his things are waiting for him in a now empty room.

Leslie and I have been joined in love for so long, but we never thought we’d be joined in grief this way – it’s not the natural order of things. We stand helplessly at the beginning of a scary and untrodden path that we have no idea how to navigate.

We are so grateful that you are all here with us, and for us, as we come to terms with the cruel and recurring realisation that our baby is gone – visible only in moonbeams and stardust, and the precious few photos we have to treasure.

What’s perhaps the hardest thing to comprehend is that my body has immediately gone on with the business of living whilst my heart and soul lag so much more sorrowfully behind. All evidence of my sweetly swelling belly has disappeared, my aches and pains relieved.

But I want them all back, as no ailment or discomfort could compare with the indescribable emptiness I have in the pit of my stomach, where a painful brew of fear, sadness, despair and shock have replaced the delightful feeling of Max’s tumbles and kicks. My arms throb to hold him and I want to cut them off to make it stop.

Max, my darling, as I celebrate proudly everything you were, I also grieve for the boy you will never be. I had so many dreams and plans for you, and I still do.

After all is said and done, your daddy and I will leave here today with the comfort of a single truth: You lived, and you were loved.

Goodnight my baby boy. I will awaken all the days of my life giving thanks for all you have given me.

Mark Twain on the death of his daughter

To die one’s self is a thing that must be easy, & light of consequence; But to lose a part of one’s self—well, we know how deep that pang goes, we who have suffered that disaster, received that wound which cannot heal. It is one of the mysteries of our nature that a man, all unprepared, can receive a thunder-stroke like that and live. It will take mind and memory months and possibly years to gather together the details and thus learn and know the whole extent of the loss.

Mark Twain, on the death of his daughter (1888)

John Lennon - Beautiful Boy [1980]

When it came to choosing a song for Max that would be played at his funeral there was no question in my mind that this would be it. I’d already been playing it in the car for weeks since finding out I was having my own baby boy. Listening to it, I had felt so happy and excited that I would be having my own ‘beautiful boy’. Also, John Lennon’s name sat on a list I’d been compiling for Max of men who had changed the world, and who I hoped it he would one day look up to. Though the feeling I have when listening to this song is now one of intense grief and sorrow, I still think that it is one of the most beautiful songs in the world, and hope that one day I will be able to listen to it and smile again.

Roberta Flack - The First Time Ever I Saw Your Face [1972]

We chose this song to close Max’s funeral service. I have always loved it very much, and Roberta Flack, too. Though I am a writer, I could not have expressed so simply or eloquently exactly how I felt when Max was laid on my chest and I glanced upon him for the very first time. * Note: Be sure never to listen to Celine Dion’s cover of this otherwise wonderful song. You have to promise!

The story of Max's birth

I don’t know where to begin my story because I don’t know where my story rightly begins. I do know where it ends, though - with me cradling a dead baby. My dead baby, who had a few hours before been safe and protected inside of me, a picture of health and robustness. 

Somewhere on or around Wednesday 23rd November 2011 I went into premature labour, though I didn’t know it at the time. The day began as one so ordinary that I cannot remember a single thing I did that day, although I have trawled my brain trying to piece it together. I’d worked an extra shift the night before for someone who was sick. I work in a boarding school and sleep overnight there. I left work at 9am on the Wednesday and needed to be back there for another shift at 3pm. I had made plans to go for breakfast with one of my ex-students that I keep in contact with, but she had to cancel so I think I just chilled out at home. As I said, I’ve no idea what I did but it wasn’t anything out of the ordinary. I probably read a book and mucked around on the internet. I may have had a nap. At any rate, I must have been feeling fine and normal as I headed off to work as usual with no hint of what was to come.

I’d been experiencing some lower back pain for a couple of weeks. I’d read that this is really common during pregnancy, and as my tummy had just started to pop out and get bigger, I figured it was messing up my posture and putting strain on an old injury I had in the same area. I saw an osteopath and she suggested the same thing. I’d also seen my GP two days beforehand because I suspected I had a urinary tract infection or something like that. She tested my urine and it came back negative so she said it was probably just uncomfortableness from increasing pressure on the organs in that region. She is an extremely competent and thorough GP and I had no reason to doubt her advice. I still don’t have a reason to doubt her, but after my baby died I found out that one of the common causes of premature labour is an untreated infection that crosses the placental barrier. Should I have forced her to test for more things? Should she have told me that infections can cause premature labour? Probably. But perhaps it would have made no difference.

The reason I include all this information is to explain why when during my shift that Wednesday night my lower back and abdominal pain began making me a bit more uncomfortable than usual I didn’t think much of it. Actually, I thought that I was just being a sook and better harden up to endure the rest of the pregnancy as I got bigger and more uncomfortable. I don’t know exactly when it started. I sent a text message to Leslie at 4.44pm telling him that it was going to be an easy night of work as only 13 out of 50 students would be in. At 6.39 pm I sent him another: ‘I have some bad lower abdomen and back pain but only one heat pack! If these are those ‘practice contractions’ then I’m going to need narcotics much sooner than anticipated when the real ones hit…’ He wrote back ‘Maybe we need to get you some now?’ and I replied ‘I’m in a significant amount of discomfort so yes please. I don’t know what it is’. 

Jokes aside, it still did not cross my mind that anything serious could be wrong. Throughout the night my colleague and I watched TV (yes, I have a pretty good job!), chatted about her upcoming wedding and my plans for the baby, and she kindly re-heated my heat pack at various intervals and gave it to me whilst I lay on the couch. At some point I found two panadeine tablets in the sick bay and took those, which seemed to take the edge off the pain enough that it didn’t keep we awake during the night or get any worse. 

By morning, though, the pain must have ramped up a few degrees as I remember sitting at the desk and wishing 9am would come so that another staff member would come to relieve me. I still ate breakfast and got dressed and woke the girls up without any dramas, though. I sent another text message to Leslie at 8.29am that said ‘Can you please have a hot water bottle ready for me when I get home. I have so much pain that I’m thinking of calling the hospital’. He was working from home that day and called me straight away to suggest I go to the hospital to be checked out. I really just wanted to get home to my bed but he insisted despite me thinking that I was making a mountain out of a molehill and probably about to waste our whole day waiting in an emergency room.

I rang the hospital and explained my symptoms and they told me to come right in to get checked. Leslie said he would meet me there. So I drove myself across town to the hospital. The pain kept coming in waves and once it had subsided I kept thinking that I’d imagined it was ever there at all. At times during the drive I even kept wishing for it to come back so that I would feel justified in going to seek medical advice! It was my lucky day, I thought, as I got a car park right outside the hospital - virtually unheard of!

I presented to Emergency and on repeating my story was taken to the triage cubicle where a midwife saw me straight away, asked me lots of questions, took my blood pressure etc. and felt my tummy for evidence of it contracting. It wasn’t, and I wasn’t in any pain at that time so I felt quite stupid, especially as all the other ladies waiting outside glared at me after I was seen so quickly! The midwife told me she wanted to send me up to the maternity wards to get a proper look over and she insisted I go in a wheel chair. ‘I can walk’, I told her, but she said gently ‘well, let’s just take the pressure off your body in case you are contracting’. I was sure this was all for nothing, so was wheeled up to the second floor feeling very conspicuous and somewhat like a fraud who was wasting the time of very important and busy people.

I was put in a single room where a midwife entered all of my history and symptoms (I still don’t know why my history was not in their system as I’d attended all my antenatal check ups there). She also felt my tummy and said she could not feel any evidence of it tightening which was a good thing. She mentioned something called round ligament pains and that it was probably just my muscles stretching to accommodate my growing baby. She made me feel better by telling me that lots of first time expectant mothers come to the hospital with random pains and that they understand it is an anxious time and do not mind. She asked me to tell her when the pains came and left and I did not realise at the time this meant she was timing the contractions. How stupid was I? Well, I feel pretty stupid in retrospect that despite all this I still did not realise what might be happening to me. She listened to Max’s little heartbeat and it sounded good and strong so awaited in blissful ignorance for the doctor to assess me before (I thought) telling me to go home and put my feet up.

A handsome young Irish doctor came to see me and asked me to again tell him what had been going on. He explained there were lots of causes for abdominal and back pain in pregnancy and most of the time it was nothing at all. ‘Just to do the right thing by you, as you’ve felt worried enough to come in here, we’ll do an internal examination just to be thorough,’ he said. I had the impression that neither he nor the midwife expected there to be any problems so I somewhat reluctantly agreed just to get the peace of mind.

After he’d finished the examination, which he managed with a poker fact, he sat down again and didn’t say anything straight away. I assumed he was just a gentle doctor who wanted to take his time. What he said next was completely unexpected and hit me like a tonne of bricks as I had not added up any of the signs in my own head. He said ‘I’m so sorry Janelle but it looks like your cervix is opening up - it’s 4cm dilated - and I can see the membranes bursting through’.

I don’t remember what happened next. I remember shaking a lot and looking at Leslie, both of us still puzzled about what this meant. Very soon a head obstetrician was called for who came in and explained the situation in more detail to us. She was also a lovely Irish doctor. Again, I don’t remember exactly what she said, but it wasn’t all doom and gloom at this stage. She said that this happens to a lot of women and that quite often they can get the contractions to slow down or stop. All I understood at this point was that I would not be leaving the hospital any time soon, and wondered what I was going to do to keep myself occupied for the next few weeks. I assumed it would be weeks because they arranged a parking permit for Leslie that lasted at least two weeks. It seems to stupid in retrospect but I really thought in doing so it meant that I was safe for at least this amount of time.

I think I realised at this stage that I was likely to have a premature baby, but I did not comprehend the danger I was in. Leslie’s sister had her baby at 27 weeks, and whilst they had a hard time for quite a few months, little Oscar thrived and was sent home a healthy little boy close to his actual due date. As far as I was concerned this was the worst that could happen.

They moved me to a birth suite which had a special bed where they could turn me on my left side and elevate my legs higher than my head. They left me there for the afternoon and I felt it very silly that I was not even allowed up to go to the toilet. For the first time in my life I had to use a bed pan and I felt so embarrassed and humiliated, especially when I missed it the first time and peed all over myself and the bed. I did not have a change of clothes with me so had to finally get into a hospital gown. The afternoon passed quickly. I do not really know what Leslie and I talked about for the most part. We certainly did not feel overly alarmed or panicked or distressed. Everyone had given us enough hope that the very worst case scenario would not eventuate that day at least.

To prepare us for what might happen, they sent a paediatric consultant to talk to us about what happens to babies that are born at 23 weeks, 24 weeks or 25 weeks. She presented us with an overwhelming array of statistics that dealt with both survival rates and rates of signifiant disabilities that occur at each gestation. It was hard to take it all in. She explained to us that 23 weeks was what they call the ‘threshold of viability’. This means that babies born this early are on the cusp of being able to survive outside the womb but that their prognosis is still very grim. There are cases where babies have survived, but they mostly ended up with major disabilities and little if any quality of life. She quite frankly told us that they do not recommend resuscitation to babies at 23 weeks but they will offer it if parents advocate strongly for it.

Both mine and Leslie’s gut reaction was that we would not want our baby to suffer so many painful interventions if it was unlikely he would survive them. We were strangely pragmatic about it. Both of us had agreed previously, I think, that we would want to be let go peacefully if there came a time that we were damaged or injured beyond repair. I think our reaction came from this place. However it was complicated in that this was our reaction when we did not think it could possibly happen to our baby. We felt it was the right thing to let such a baby go, but did not comprehend that the decision we were making was for our baby, not some unknown baby or someone else’s baby, or a hypothetical baby. Though I suspect we would have stayed with our decision regardless, I have since thought the doctor should have done more to bring this fact home to us. She told us that if the contractions stopped, we should be prepared to make the decision again at 24 weeks or 25 weeks as the circumstances change quite dramatically in a very short space of time. At 26 weeks, for example, they will resuscitate your baby whether you want them to or not. But even at 24 or 25 weeks the prognosis is a whole world better than it would be at just a week earlier. She left us with some information to consider but we didn’t even look at it. We either thought we had plenty of time to talk about it, or else we knew in our hearts that our baby was coming that day and the decision would be taken out of our hands. 

By the end of the afternoon I was experiencing more pain. The nurses gave me some panadeine forte to take the edge off. It made me sleepy. I managed to get in contact with my dearest friend, Kate, to tell her what was happening and I also contacted my mum who was understandably worried and upset. Kate and her husband Mark came into visit me and we had a relatively normal conversation and a few laughs. They left after about an hour with promises to talk the next day.

It soon became clear, however, that Max was going to be born that night. My contractions got a lot stronger and closer together all of a sudden. I went from being quite relaxed to quite agitated when the pain kept coming. They sent the obstetrician to see me again and she agreed that it looked likely I would have a baby soon, though she dearly hoped I would not. They had given me a drug called Nifedipine which is a calcium channel blocker which is usually given to people with high blood pressure. It is known to stop contractions in some cases. It did not work in mine. My body, despite my innermost prayers and wishes, continued to prepare itself to give birth and there was nothing I could do but watch helplessly as I neared closer to the point of no return. Leslie asked if it was OK for him to leave and go home to feed Pepper and grab a few of our things. They said he should definitely stay put so this is when we knew for sure that there was no going back.

Instead, Leslie rang Kate to come back in and pick up the keys to go to our house. She came and did so, and in the meantime the obstetrician came in to say the focus was now on preventing me experiencing pain or trauma so they gave me some shots of pethidine, and after things had progressed even further they sent an anaesthetist to hook me up to a morphine drip that I could administer myself. Though I don’t think it did a lot to take away the pain of later labour, it did give me something to focus on with every contraction. I pressed that button with all my might!

When Kate arrived back at the hospital to give us the keys labour was in full swing and I am so grateful that both Leslie and the midwives asked her if she would be willing to stay and support me through what was going to be a very traumatic time. To her credit, Kate did not hesitate to say yes and she was soon sitting beside me. She tells me that I spoke to her and made a few jokes but I have no memory of any of it, only glimpses. I remember at one stage yelling out ‘fuck!’ and her saying ‘come on, you can do better than that, you say worse than that over breakfast on a Saturday!’. I also remember telling her I was glad I’d shaved my legs and my bikini line the day before! For most of the labour I did not want anyone to talk to me or touch me. I spent the whole time with my arms covering my eyes as even the dull lights were too much for me. When the pain became too much i would grip the bed and turn away from everyone.

I remember becoming very upset and distressed when my waters broke. Not only did the sensation frighten me as more kept pouring out every time I had a contraction, but I think it was the moment I realised that this was really going to happen. That my baby was going to come out. 

I was supported the whole way through this experience by a young midwife called Tamara. She was only in her second year of the job, but was such a calming and reassuring influence. I kept telling her how scared I was and she helped by calmly explaining to me what was happening, or what was about to happen, how the next part would feel, etc. I remember asking her if it was finished yet, when will it finish? And she told me that it would soon - that soon I would feel an intense sense of pressure and have to push my baby out into the world. Sure enough, this happened exactly as she’d described it so I knew exactly what was happening. It was the strangest and most intense sensation that I can’t even begin to describe. My body started pushing and I had no control over it whatsoever. I could not have stopped it if I tried. Throughout this whole time I could not shake the feeling that I was a mere observer of what was happening to me, not an active participant. It’s an experience I’ve never had before. 

Suddenly, there he was. My perfect baby boy in my arms. He was born at 11.17pm. He was so still but this did not distress me. It felt like he was meant to be that way - peacefully sleeping. I did not do any of the things I would have expected I would do: scream at someone to save him, collapse on the floor in shock, try to resuscitate him myself. I just held him calmly and lovingly, in absolute awe at this little creature. I think I was overwhelmed and scared of him a little though as I soon gave him to Leslie to hold, but kept my hand cradling his little head and stroking his face. I did not know if my son was dead or alive. I knew that he was not breathing but his heart was still beating. What did this mean? Tamara told me that it was like being in a coma and that technically speaking he was still alive. His little heart beat for over 5 hours, which was very unexpected, and which just shows was a strong little boy he was. He died in his daddy’s arms, having known only love and affection in his short yet significant life. 

We held him for many hours after he died and never left him alone for a second. I managed to have a shower and we had some lovely photos taken by the midwives, and then in the morning by a professional photographer at the hospital. I am filled with regret that I did not stay longer in the hospital with Max. We left around midday. I wanted desperately to get home out of that god forsaken place, and in retrospect I think I was afraid of Max disintegrating before my eyes. I wish I’d been able to articulate this fear at the time. I had never seen a dead body before, least of all a child’s, and I was worried that he would go stiff or start decomposing or something. I’m not sure exactly what concerned me, but I wish I had asked someone about this and felt more confident to spend as much time with him as I needed. Each night when I go to bed I am filled with regret that I could have had more time with him, taken more pictures, if only I’d known what I know now.

There is no way to explain what it is like to leave your baby in the hospital, never to see him again. I did not want them to put him in the morgue and still have horrible visions of what such a place looks and feels like. I did not have a change of clothes so I had to leave the hospital in one of their dressing gowns, walking out in the corridors along which other women were giving birth to healthy babies. Everyone who saw me must have turned away or stared at me in horror, knowing that something awful had happened. Or maybe they had no idea, like the guy in the carpark or cracked it and starting beeping the horn when we did not get in the car and leave fast enough for him to take our spot. I was devastated when this happened. I realised that to the outside world this was just an ordinary day and that no one had any idea of the immensity of the tragedy that had just befallen us. This was brought home to us again when we arrived at home to find that a brand new cot and mattress we’d ordered had been delivered that very day. What a cruel irony. I’d been hassling the company for weeks when it hadn’t arrived and here it was on the day the baby it was intended for died.

We showered and I immediately threw everything out of the bedroom. I had this strong need for everything to be clean and simple. Despite giving birth only a few hours earlier, I was changing the sheets, cleaning the bedside tables and putting clothes away before I would let myself sink into bed and sob and rest. We spent the afternoon in each other’s arms, in between making funeral arrangements and contacting people to tell them what had happened. Both my GP and psychiatrist had been informed of what had happened and both encouraged me to take some valium and get some sleep. The next morning would be the first of many that I would awaken sobbing when as soon as my eyes opened I had to remember all over again that my baby was gone. I cannot help but feel I will awaken with this sorrow all the remaining days of my life.

My darling son - who lived, bravely, and was loved by all

On 24 November 2011, at 11.17pm, I gave birth to the most perfect baby boy, Maxwell Alexander. My darling son, who I’d nurtured inside me for 23 weeks, would, however, not be mine to keep. He died in the arms of his mummy and daddy just a few hours later, having known only love, adoration and affection in his short, but significant life. His mummy, daddy, his Aunty Kate, and two amazing midwives from the Royal Women’s Hospital, were there to witness his arrival in the world on what started out as an ordinary Thursday. They, as well as all who hear Max’s story, will ensure that the memory of his life, lived bravely, will always be remembered.

Max weighed 682 grams and was 32cm long, and as you can see, we could not but marvel at his incredible beauty; his perfect grace.