Tired of Grieving by Dani

I took my rainbow Harrison (3) to a Kindy event today – an under 8’s day. It was supposed to be fun, supposed to be a family event, with an animal farm as well, until a little girl in his class grabbed my other hand and said ‘my mummy couldn’t make it can I walk around with you and Harrison.’   And of course I said yes, but just like that the grief washed over me. I shouldn’t have a spare hand to grab, they should both be taken, by both my boys, but only one is still here on Earth.

I’m tired of knowing that there are simply more of these painful moments to come. I lost my first-born, so at that time I never really knew all the things I would miss out on until Harrison came along, and now, as he does these things, they are things I am also missing out on with Jasper. I can’t make people understand – and nor would I want them to – it’s soul destroying and you cannot make people understand that your heart will physically ache for the rest of your life. Before Jasper, I didn’t even know a heart could ache. And yet still I hear that I should be grateful for what I have, when in actual fact, the loss of Jasper has made me able to appreciate happiness and joy more so than before – to really appreciate what I do have. But no matter what, the empty room is always empty, and nothing brings back what you have lost, and what you can never have. I will never get mementos, hold his hand, argue with him, meet his first girlfriend, get tired of him arguing with his brother, watch him get married and see his children. All of that died the day he did. And yet I watch his younger brother achieve what was robbed of him every day.

And I realised – I am so sick of grieving. It’s been almost 7 years and to some I am a veteran and to others I am still so new on this journey. Some things have gotten easier but not the things I miss out on... that Harrison misses out on. I’m sick of still feeling like that – sick of still feeling confused, still feeling guilty, still feeling like I could have done more, still feeling angry, feeling sad and above all feeling discouraged in myself that I haven’t done better.

I’m tired of my grief. I don’t want to feel sad. I don’t want to have an internal breakdown when one of my son’s friends wants to join us to look at the farm animals. I don’t want that hole in my heart to be pierced open at the drop of the hat. And I was asked today – if you could spend only 15 minutes with your loved one in heaven, would you? Of course I would. I’d do it in a split second just to hold my baby boy in my arms again. To tell him that I love him one more time. To make sure he is happy. The explosion of grief would be terrible, but I live with grief every day, so why wouldn’t I just to see him again?

For the most part I enjoy all the beauty in life and am grateful for what I do have. Every day with my rainbow is a blessing and I often get comments of how clear the love we have for each other is. But you can’t control emotion and it crashes down on you, drowning you like a wave and all you can do is try and stay afloat until the wave recedes.

Tired. At the moment it is a word that sums up my life. Tired of grieving. And knowing that the road is stretched out in front of me, never-ending, is one of the most tiring things.

Dani

If you require support after reading this blog please contact 

Sands on 13 000 72637

Danielle Hall

Wife to Corey and Mumma to two boys: Jasper Rhys in heaven and Harrison Phillip Robert in her arms. Jasper passed away after PPROM at 23 weeks and birth at 26 weeks, surviving for 10 hours in the NICU unit. Currently completing a Master of Social Work with the goal to aid in the safety and protection of all children, because all children deserve to feel safe and loved.

Honouring One's Loss by Therese

When my baby miscarried 34 years ago, there was no such thing as a memorial garden or cemetery area  (such as the one at Fawkner Cemetery in Melbourne) where I could go to honour my loss.

Some 6 years ago I was divorced and my mother died, all within a few months. While struggling with the grief in both of these events, it got me thinking about the loss of my baby all those years ago. What could I do to honour that child? I felt it wasn’t fair that its passing had no recognition apart from what was in my heart.

Around this time, my son and his wife also lost two babies to miscarriage, which reinforced my desire to do something worthwhile to celebrate all the lives of those lost babies in my family.

There were a number of things I could do: draw, write a poem (I did do this too), plant a tree, have a plaque made. What I decided to do was relatively simple but so meaningful for me. I decided to buy a rose and plant it in a pot - it turned out I had chosen the Jane McGrath rose, a lovely soft pink rose.

I invited my three children to share in the celebration that I had planned to honour these babies. My daughters came to share this with me, while my son felt unable to do so at the time – they had their own way of dealing with their grief, which in itself reminded me again how we all grieve differently.

At the same time, the planting of this rose reminded me vividly of my mother who had a proud love of roses with her favourite being a deep red rose. The celebration occurred with some beautiful piece of music and some words were said.

I had finally honoured my lost child and the rose bush continues to flower prolifically, giving me beautiful pink blooms twice over the summer period. The bush has lost it roses now as it readies for the winter but I will be looking again late Spring for the first signs of life.

Therese Murphy April 2016

If you require support after reading this blog please contact 

Sands on 13 000 72637

About Therese 

Therese has worked in the field of counselling and community development for over 20 years. She has worked predominantly in the health and welfare field. She has worked in the primary school sector counselling children through a range of loss and grief and traumatic experiences.

Therese has also delivered a number of conference papers on the theme of children’s loss and grief and articles on stress management too. She also worked as a Sessional teacher in the TAFE system and the Private Sector in the Community Services area, including Mental Health Welfare for over 20 years. She is also an experienced Supervisor.

Therese has as a small business conducting Reiki, Inner Child Therapy, Meditation and similar therapies. She is also works as a Group Facilitator and teaches stress management and relaxation techniques within the local community as well as running workshops in the areas of trauma and loss and grief and related areas.

Therese is a published poet and has three children and four delightful grandsons. She enjoys nothing more than a good cup of coffee and the occasional glass of wine or bubbly. She is passionate about climate change and the environment, wanting a clean world for her grandchildren to grow up in and one where any type of violence is not tolerated.

Mother's Day! - Tiffany

Two years ago I got to experience my first Mother’s Day with 3 gorgeous children: my two girls and my first born son.

The Mother’s Day was amazing. I got a cup for the first time (I still use it), the love I was shown was amazing, a feeling I was willing to embrace for the rest of my life.  Little did I know 3 days later I’d lose my son and two years later I’d be 3 boys down with 2 girls who do their own thing.

I’m not looking forward to Mother’s Day. Mother’s Day scares me. Mother’s Day feels like bad luck to me. Since losing my boys I wonder if I’m even worthy of the day, I wonder who is going to leave next. I hope one day this goes away but I just don’t see how it can L.

For the first time my eldest daughter is so excited for Mother’s Day and I’m trying to keep excited with her but it’s so very hard.

To make my week worse, I’m 14 days late for my monthly: I did 5 tests, all negative and a blood test saying the same thing. All the doctor says is that it’s normal to be that late for some women and all I want is something positive.  

I often look to the moon for guidance from my boys and usually feel more lost than anything.

Our second daughter has started looking out the window of a morning, yelling hi Wade, Jax and Tristan. Then she turns to me and says Mummy I miss them. I reply  me too honey. I struggle to keep strong sometimes as I feel bad that they feel sad also. Our eldest daughter has started saying Mummy I miss you at school, I want to be with you all day. That makes me sad also because I understand the pain they feel and the worry they always have. Every day after school she asks Mummy are you pregnant yet? And her face when I say not yet hurts.

I’ve felt myself connected with my cousin who is nine at the moment and I think its my way of dealing,actually interacting with a boy: it makes me happy and sad to see what I’ve lost. I’m not even sure it makes sense.

It’s been a really long two years and I’m very tired and scared all the time. I feel I’m doing well, it’s just certain times that obviously get at me. As you can probably tell, I’m full of mixed emotions and its just an up and down rollercoaster that I have to ride.

Anyway I’m off to rest now, thanks for listening.                    Tiffany

If you require support after reading this blog please contact 

Sands on 13 000 72637

Tiffany Aghan

Wife to Luke and mummy to Tamara and Summer, in her arms, and Wade, Jax and Tristan, in heaven. I have recently completed certificates in law and in psychology and in the process of completing certificate in medicine. I am having time off at the moment to spend more time with my girls. But I am hoping one day I will continue where I want to go.

Untold Stories of Mother's Day - Sarah K Reece

In 2015, I faced Mother’s Day thirteen days after cremating my beloved Tamlorn. Tam was my first pregnancy, silently miscarried before 12 weeks. I was devastated and could not bear to be around anyone else. I took Tam’s ashes down to a quiet camping place by the beach, and slept in the back of my van so that I could weep and paint and be silent, and talk to them as much as I needed to when Mother’s Day dawned. I wrote letters I never sent to my own Mother, to my Godmother, to other women who have mentored me. On another day I went to visit my Mum with a gift and celebrated her. That evening I returned home and Rose and I planted a peach tree in Tamlorn’s memory. But that morning I needed to be alone with my raw grief. I couldn’t bear to pretend for a moment that I could think or breathe about anything other than my dead child.

It wasn’t my first Mother’s Day with grief. I wanted children but have fertility problems. After a long term relationship ended with me fleeing homeless to a domestic violence shelter, I was glad I’d not had children, but I also grieved what might have been. Approaching my 30^th birthday, the cut off I’d been given by doctors if I ever wanted to carry a child, I started to read books on grieving infertility. On bad days I would get stuck crying in the baby aisle at the shopping centre, entranced by the sweet baby things I had no need of, full of hopeless longing.

My beloved partner Rose has suffered the loss of six unborn children before we met. Mother’s Day is  a day she greets with a dread horror. The first time it came around for us as a couple, I bought her a candle. I was scared of intruding on her grief, but I was more afraid that she might think no one remembered her pain and her babies. It was a small token, given carefully. She wept. There was an endless pit of grief in her, utterly black and desolate. It was a wasteland of broken dreams and profound loss. Unnamed babies and lonely hours of heartbreak and suffering through their loss had left a wound in her so deep I was afraid nothing I did could help. But down in that darkness was now a candle. In among the memories of times she’d been told to ‘just get over it’ that ‘they’re not really babies’, or that ‘your body is killing your babies and no one knows why’ was something else – recognition that she was a Mother. It was the start of something different from suicidal depression and terrible suffering for her.

The second Mother’s Day we spent together, we were invited at the last minute to join her some of her family for a dinner. Delighted, we attended. Being around this little family was bittersweet on that day. I held her hand. The children ran around wildly after bath time, a riot of hugs and wet, clean skin and perfect smelling hair. The light in the home was golden orange. We were glad to be there and holding onto our own sadness tightly. After dinner, the Grandmother rose to clear the plates away and another person said ‘Oh, you shouldn’t be doing that on Mother’s Day!’ We were asked to do the dishes, as the only adult women present who were not Mothers. We did so without complaint. It was several days before I erupted with rage at home, bursting red hot from my numbness at their casual insensitivity and my own silence. Mother’s Day always brought with it these injuries, so slight to others, and such searing, sobbing, wrenching pain for us. The anniversaries that pepper our year, of conception dates, death dates, due dates for babies we never got to meet have a private anguish of their own. But the constant stripping of identity that is Mother’s Day is a different kind of agony. It comes with so many casual comments – that ‘we can’t possibly know what it’s like to have children of our own because babysitting isn’t the same’. That ‘it will be wonderful when one day we can be Mothers’. Or, knowing we planned to have children together; ‘so which one of you is going to be the real Mother?’

What is a real Mother? She carried that child herself. She is the genetic Mother who produced the egg. She’s not transgender, or a stepmum, or a godparent, or a nurturing aunt. She hasn’t adopted or fostered or taken on young people in need. There’s so many stories Mother’s Day doesn’t speak to. Most of all – she has a living child. We strip the name Mother from those who do not, and unlike widows, our language fails to replace it with anything to signify the loss. We are not-Mothers, not-real-Mothers, not-really-Mothers. There’s no place for our experiences on Mother’s Day, in the same way there’s no place for the experiences of those of us with abusive or absent Mothers. What there is instead is a lot of swallowing down that pain and trying to survive the day.

Each year, Rose and I have moved further away from staying quiet and allowing other people to decide our story for us. We have both stopped trying to get over our experiences, or to look like we are coping. We buy each other gifts on days like Mother’s Day, and we go somewhere special together and hold hands, and cry. We tell friends or share on our social media what the day means to us. I write and paint about pregnancy and miscarriage and grief. When people ask us if we have children, or how many we have, we have started to count those not with us, or to say simply ‘none living’. With Tamlorn we changed the pattern completely and mourned them in public. They were given a name, they were cremated. We planted a peach tree in their memory. We told people, not only that we were pregnant – despite the advice not to- but that they died.

I started to push back against the wave of well-meaning people who inflicted pain in a thousand small ways. It took time to find ways to gently say things like ‘I know you mean well, but that hurts me to hear’. I also found a rising sense of rage that those of us who were suffering were expected to keep it hidden, for the sake of those who did not wish to be disturbed. This anger I tapped into when people pushed hard, trying to make us stop grieving, stop considering our losses ‘real’, or failing to be optimistic enough about how God/the universe was going to provide. I lost patience with those who kept pushing their ideas on either of us, even when we expressed pain. Some relationships were burned. But in small ways, the pain was less. There were far fewer of these constant new wounds from people around us, and when they did come we were no longer as silent or accepting. Speaking up and pushing back changed the pain. It was like slowly drawing poison from deep wounds. They were still deep and terrible, but not driving into suicide or despair. Other relationships grew stronger, friends saw us more clearly, understood the bitter-sweetness in our lives better. Our hearts were more visible. We asked for what we needed, told people what it helped us to hear. People who loved us connected in ways that didn’t hurt.

We also started to be part of events or support for others who had experienced miscarriage or loss. We sat weeping and numb together at a walkathon and released a white balloon. I called helplines and attended a support group. I saw in the trauma and devastation of other people’s stories our own pain reflected. We were not alone, not crazy, not unusual in this world at all. I saw in others and myself the symptoms of severe trauma – very familiar to me as I was diagnosed with Post-Traumatic Stress Disorder at 15. No one seemed to be acknowledging to any of us that these experiences could be deeply traumatic, with fear, blood, helplessness, horror, death, and a terrifying indifference from many of those around us. I felt like I had fallen into a secret underclass of people staggering home wounded from a war nobody speaks about.

Talking to others who have suffered multiple losses with no living children yet, for the first time Rose and I didn’t stand out and we didn’t need to hide anything. When I called the Sands helpline, overwhelmed by fear and a sense of death when we started trying to conceive again after Tamlorn’s death, a woman’s voice held me in all the shame and terror of how profoundly broken I felt, and told me exactly what I needed to hear: this is normal. It drives us crazy. It drives us into breakdowns. This is what it is. You do not need to be ashamed. Don’t carry it alone.

So, this year, as Rose and I are expecting again, we approach Mother’s Day with grief, excitement, and a determination to do what we need to do to affirm to ourselves that we are Mothers, and that our needs and grief counts. We will find private moments to hold each other and talk of our babies. We will give small gifts and be gentle with ourselves and each other. If people exclude us or advise us in ways that hurt we will push back gently. We will be together or apart as we need, in company or privacy as our hearts require. We will tell our babies we love them. We will ask our friends and family to be gentle with us. We will hurt, and hope, and mourn, and celebrate each other, and love. As Mothers. 

Sarah 

If you require support after reading this blog please contact

Sands on 13 000 72637

Sarah K Reece

Sarah K Reece is a ‘mad artist’, poet, and public speaker. She and her partner Rose have each experienced miscarriage on their hard road to becoming Mums. They live in Adelaide with their non-biological teenage daughter and as many pets as their unit can fit. Sarah lives with disability and is a passionate about mental health. She uses her business to fund networks that offer free community resources for vulnerable people. Sarah creates art such as ink and oil paintings and sculptures to make her private experiences public, gently opening up spaces about taboo topics such as pregnancy loss. You can find her art and personal blog at sarahkreece.com

Reflecting over the past 10 years by Kristina

When I look back over the last 10 years I still can't believe I'm still here let alone breathing. I have had so many people say to me you are so brave,  I couldn't do it.

My answer is always the same. I'm not brave, I have no choice. My heart still beats, my lungs still breathe, the world keeps going.

Do I wish it the world would stop, that my heart would stop?

Many many times have I wanted the world to stop, to let me off, to let the pain and grief stop.   Is that brave?

It's not brave to wake up every day with two pieces of your heart missing. It’s one of the hardest things to do.  To see days, weeks and months then years go by without your babies is indescribable. I have tried many times to write it down, to find the words, but there aren't words for a feeling that fills your whole body with pain and  emotion and not just once but daily.  When I'm told I'm brave I know people really truly mean that.  That they believe it. At times I guess I am or have had to be. But I don't like the word brave.

When we said hello and goodbye not once but twice I thought that was it. I would never take a baby home. Never watch them grow. Curt and I looked into adoption as the thought of being pregnant again filled me with fear and anxiety.  I couldn't bear the thought of losing another baby.  We also decided to get married. I put all my energy into wedding plans. Looking back now I was just putting my head in the sand.  If I didn't have to remember then my grief just for a while would stop.

It didn’t stop at all it just came in other forms. I was so angry. I would snap for no reason. I would get annoyed at the smallest things. I didn't know this me. This me was new. The old me would find the good in anything no matter how small.

I can't remember the last time I slept through the night without remembering something about their births.  I think everyone I love will die or if anyone is sick I stress.  I ended up with this constant pain in my left shoulder. Doctors could not find a cause for constant pain and tingling.  I saw a counsellor just after we got married as I was struggling with working at the same hospital where both mum and Charlie passed.  One session I happened to mention this pain. After a few questions she told me that pain is grief.

When we try to suppress our pain, the body stores it and it can manifest into pain. She asked did it hurt more some days than others?  I sat and thought it hurts mostly at night and when I’m at work. She told me to stop the pain or to ease it I must let it out, to talk.   To be honest I thought she was crazy. How can my body store grief!  Yet it did. When I told her my biggest fear was to never bring a baby home my shoulder started to really hurt. The more I talked and opened up about my guilt at wanting another baby but fearing it would never be, I could feel the pain lessen.  Over our sessions the pain begun to subside. She said I may need physio as it could help release the tension that had built over the last year.

When my shoulder flares up now I have to stop and ask myself, am I holding my grief in or is it something simple like overworking it. Most of the time it is simply too many years of nursing and holding babies.

Around Neve and Charlie birthdays the pain really builds. Sometimes i have to take me time, to sit down in a quiet place and let myself feel the pain and let it out.

Most of the time it's tears that flow and the grief of not having them. Sometimes its guilt at not being able to help them or for having two beautiful rainbow babies.

With the help of my counsellor and some very good friends, I decided that Curt and I would try again.  We fell pregnant on our wedding night. We found out we were expecting Maya when we were in America.  Deep down I already knew. I knew the signs a lot earlier now.  We were happy but so anxious and scared. Could we survive not only as a couple but as individuals if we said goodbye again?  I knew I wouldn't.

Her pregnancy was normal in the fact that I had reflux and morning sickness. We had no complications.  In no way was it normal in the sense of joyous and glowing and full of excitement.  I was petrified every time I went to the toilet. What if there was blood?  Every pain was that labour or her pulling her cord and stopping her oxygen?

Half way through her pregnancy I was put off work by my obstetrician as I was so anxious my bp was high. I was lucky he was a lovely man who stopped at nothing to give us Maya.  Neve and Charlie’s birthdays came and I was a blubbering mess. I missed them so much. I felt guilty for wanting another baby.  We sat down with our obstetrician and decided it would be better to have her by C-section. I would have loved to give birth naturally again but i was so scared. This way I had a date and a time.

The day came to meet her. All I kept thinking was not until I hear her scream will it be real. Not until I see her kicking and crying. Only then will I truly believe.

I remember Dancing Queen playing in the theatre. I remember Curt holding my hand so tight.  I remember talking to Neve and Charlie asking them to let it be ok. That I loved them.

The doctor began. I was staring at the celling telling myself you have to breathe, she needs you to.  She was here at 11.47am on the 18th February.   What was my first question?  Is she breathing, is she alive?  The whole theatre shouted she is, she is. This tiny little crying baby was popped over the drape. There aren't words to describe the feeling of utter love I felt and quickly followed by tears over what should have been.  You see,  when you lose a baby and then get to take one home, it’s filled with bitter sweet moments.  The beauty of taking Maya home and watching her grow is tainted with the what ifs.

We also went on to have our beautiful Zack 2 years after Maya.  This journey of grief is never ending. It always surprises me. I can go long periods now without crying but when it hits it hits hard and fast. I wish I had magic words of wisdom that can help others to say it stops but I can't.  All I can do is share my honesty and my journey and hope I can help someone who is feeling the way I was.

Grief is a journey that we will walk forever.

Kristina

If you require support after reading this blog please contact

Sands on 13 000 72637

Kristina Riley

Kristina is a children's nurse and a counsellor.

She has four beautiful children.

Charlie and Neve are her two angels who are the  inspiration for raising more awareness about stillbirths and pregnancy loss.

Her two miracles Maya and Zack are the reason she keeps moving forward on this journey of grief.

Her husband Curt is also her inspiration to raise awareness for fathers and their grief.

There needs to be more awareness for us all.

A Story of a Medical Termination by Zena

To the newly bereaved parent,

Please know that you're not alone. I want to share my story of medical termination.

This was extremely hard to write and share, in a world full of supportive people we have certainly felt alone because it's such a taboo and people are scared to talk about anything to do with the loss of a child. Unfortunately,  we live in a world where, we as humans, are judged for what shoes we wear, what house we live in and whether we like boys or girls so when we had to make a heartbreaking choice,  it became apparent that we would be fearful of what people would think.

The reality is that you are not in our shoes and you never will be. Even if you have to take the same path as us your story will still be different. Although we wish this would never happen to anyone the reality is once you get outside the bubble you live in it's everywhere, people are silently grieving, too afraid to let people know what's going on because they are scared of judgement. I've met some of the strongest mothers and heard their stories, some full term, miscarriages and medical terminations, the way people treat their child as if they don't exist weeks after they went through the toughest struggles is appalling. It took me almost 12 months to grieve my best friend passing away, she was my puppy of 15 years. ’’Getting over” a child passing away will not happen in weeks, months or years because you don't "get over them",  they are a part of you forever. I feel If we share her story and someone you know or perhaps years down the track your children or children children’s have to face something like this you might be able to say that you knew people who went through this and you know that they survived and made it through.

This story is about our daughter Chloe who is no longer in my tummy we should be around 8 months pregnant today but sadly I am not. In a few weeks I would be on maternity leave and instead we are trying to find our "new normal". This story is about 10 weeks of survival, learning how strong your marriage is, courage, loyalty, friendships, love and a $h!t unfair situation. It's not being posted for you to feel sorry for us we have done enough of that for ourselves but more for awareness. #breakthesilence. It's to help us in our grieving process because bumping into people in the street that don't know our story is terrifying.

On the 30th of April 2016 we should have been welcoming a precious bundle of joy into our lives listening to her cry, changing her nappy, watching her smile and grow and instead we will release balloons and blow out candles cake on behalf of her. We we're faced with decision that we would never wish upon anyone, we planned a funeral when others listened to their babies beautiful cry and we set a baby room up for our little girl and this room remains empty. She was sent to be with the angels at only 21 weeks gestation.

Her name is Chloe Fay Mason. She is the daughter of Troy and Zena Mason and although you can't physically see her in our arms she existed. She was 26cm the same length as a big cordial bottle. She had my nose and the rest of her was her daddy. She had long feet and hands, little specs of blonde hair and she was ours. Made with love! And certainly missed already.

On the 10th of December we went for our 20 week scan (5 months) right on Troy's birthday.What a cool present this would be to find out if our baby was to be a girl or a boy right?? We're in the "safe" zone what could possibly go wrong. The ultrasound person couldn't tell us the sex though he did mention that the baby yawned and waved at us, he failed to mention why he was paying particular attention to her spine and brain, he was actually silent the whole way through. Little did we know that this was the start of something much bigger.

We were surprised when we were called into Mater hospital on the 14th December and this is we're we would be told that we we're having a baby girl and than hit with information that our little Chloe was not well. She had Spina Bifida, Hydrocephalus, Chiari Malformation, Arnold Chairi 2.

What this basically meant to us without a doctors degree is she had a lot of spinal fluid on her brain (lemon shaped head), they could see issues with her spine and an open pocket on her back exposing her spinal cord, this pocket normally closes off during the first few weeks of being conceived. We were told if she were to survive (they weren't sure) and even make it to full term she would be straight into the operation theatre at not even a day old to have a permanent stint put into her brain to drain the fluid build up that she would forever have, she would then go into an operation to close the opening on her spine to stop her exposed spinal cords from showing and getting infected. This wouldn't fix the problem though the damage already happened when she was 2-4 weeks gestation. Although some might live with this, their story is not ours and we're all not the same.

We walked into that room wanting to find out the sex of the baby and walked out with a heavy heart and what felt like a house sitting on our shoulders. The doctor told us the outlook on her life would be grim.  She would be brain dead, she wouldn't be able to walk, we would be changing nappies for the rest of her life and she would be in a wheelchair.  The doctor gave us two chooses 1. medical termination or 2. we continue on and "if" she makes it full term we would have support. I used to think the hardest decision I would have with a child was what school they would go to or whether or not to breastfeed. But choosing whether your child should die or stay alive is by far the hardest!

We waited for the doctor to write up all this information in a room full of happily expecting pregnant ladies but we were distraught, our brains were going one million miles an hour and we still had to drive home. When we got home we were silent we had no idea what to do.  Googling what we had heard had never seemed so important and some how Troy and I had to come together in the end to be on the same page. I searched spina bifida pages and I found all the fabulous stories of the children who have parts of Chloe's diagnosis but what I had to realise is everyone's stories are different and no one shares the "terrible" stories. What heartache the parents went through or what the child had to go through. We just hoped the doctors weren't incorrect.

After many consultations with doctors and lots of tears we chose to take the pain now so our Chloe didn't have to. We didn't want to bring a child into the world just to have her exist without living. Would she even know that we existed? What life would she have? The guilt we live with everyday would never be as painful as it would be to watch as she grew without "growing". I've been in retirement homes and I've seen young people in here who can't fend for themselves is this what she would be like? A board of doctors had to approve our decision and when they did I was admitted to the hospital it was so close to Christmas. After waiting and contractions after contractions I went had Chloe via L&D the morning of the 19th December (right in between Troy’s and my  birthday) with limited pain relief - I felt I needed to take some pain for our little girl. And I will tell you now the labour stories people gave me when I was pregnant will never scare me because nothing can quite prepare you for birth of your baby let alone to a little angel. 

When little Chloe was put into our arms we couldn't celebrate because this is what ended her life,  she didn't cry, she didn't move, she was cold and we were numb. We spent a full day with her, dressed her, gave her kisses because she was our beautiful girl and this would be the last time we would ever see her and those moments will have to last a lifetime.

She had the obvious signs of her diagnosis, a lemon shaped malformed skull and the spina bifida sacral lesion on her back. Everything else we were told of would have to wait till the autopsy was done. We can't get any of those moments back but we were lucky enough to get precious photos of her from heartfelt photography so we can never forget her face. She had family and friends visit her as well as flowers and cards from beautiful people across the state. Chloe got cuddles from her aunties and uncles and grandma.

Every day after we woke up and we wished it was all a big nightmare I would look down at my tummy and see a belly that was empty. I only recognised her movements after she was no longer in me. If going through labour wasn't enough, your hormones are so messed up and to make matters worse the breast lk decides it might pay a visit.

Life sucked completely for the first month after she was born. Even though you have just had a baby people fail to realise that you should be taking it easy because there is no physical sign of a child. Conversations are awkward because no one knows what to say and everyone looks at you with sad eyes. The simplest of tasks are a big effort and some days I felt like I was a two year old chucking a tantrum. I couldn't have got through with my amazing husband. 

Chloe was in getting her autopsy done and this would take 3 weeks. On my birthday we were asked if they could keep her brain and spine as they were running behind. We told them to take their time in hope it might shed some more light. We never imagined our pregnancy to end this way, after all no one shares the terrible stories.

Each week was something new first we had to find items to have with her for the cremation, visiting her in her itty bitty coffin with all the special effects that grandmas and aunts had provided (photos of her cousins, letters and drawings) her birth certificate arriving, her ashes, her death certificate, cards in the mail, donations and preparation for her ceremony. When would getting all these triggers end.

It was then time we had to go back to the same hospital we got our Chloe's diagnosis from. We talked to the doctor about everything that had happened. We were advised the likelihood of this happening again would be very unlikely. I asked questions like; the fact that I had a doctor’s appointment prior to trying and they didn't say anything about my bloods, I took my prenatal vitamins prior to convincing isn't this meant to prevent it? We ate well, I lost 20kg, didn't drink, my husband quit smoking - why did this happen… Apparently 70% of NTD can be prevented by your pregnancy supplements the other 30% , they call it "just one of those things". I've had my folate and folic acid tested and I had a higher range in my system which is subject to nine months of tablets and now I've had to add in ten times the amount through a jar of $5 pills which we think mothers should just take regardless!

We had a ceremony for Chloe on Australia Day at the place where we got married. We had a balloon to release, but Chloe decided it would be better to go earlier and it was released in the car. Chloe had around 30 people come (more would have) and we had a lovely celebrant say some beautiful things. We had some tables set up with some of her special effects, her birth certificate, her pictures, teddies, funeral books and memory jars made just for her. We then spread a small amount of ashes in the ocean and blew bubbles. It was perfect and heart-warming that we had so much support from our amazing friends and family.

The situation we have been in has been very $h!T, my husband and I are stronger than ever, we have learnt a lot about true friends and family, the support we have received off of the "Facebook world" has been nothing short of amazing, even when I'm having tantrums. The messages, the calls, the cards, the flowers, the thoughts and the kind words. The support from our work, the assistance from the hospital and the doctors it makes us feel so lucky and appreciative in a time when "luck" isn't in our side.

We personally wouldn't be where we are today without some key people in my life, new and old virtual and real. I've met some people from all around the world on support groups for people in this terrible club. In a time when you feel so alone you start to realise that you are not. To help my healing I donated my wedding dress to angel gowns to make little angel dresses, I edited photos of other angels and put them into special wall features for their parents. I've seen so much pain on these groups and if I could have any super power it would be to give everyone's babies back and let them have them forever! When I hear people in the normal world complaining about something to do with their child it does make me sad. This is because little things like being up late at night to crying, or teething, or fevers is a luxury in my new world these things are things that mothers in this "group" would die to have. Hug your children and loved ones tightly and please enjoy these precious moments. All kinds of tragedies strike when we least expect it and life shouldn't be taken for granted.

My husband went back to work in the new year and I was back at work on the 15th Feb which was 9 weeks after her birth. Australia is amazing for recognising her birth and allowing me access maternity leave, however had she been 19 weeks instead of 20 we wouldn't have been so lucky. Which makes me sad. I've had the privilege of seeing many beautiful angels at all gestations and I can tell you a baby is a baby as soon as it's conceived! The emotional turmoil that is left whether for miscarriage, stillbirth, being in NICU or medical termination is huge but to not be told that they exist prior to 20 weeks is just messed up.

What hurts more is when people use words that make these big events in our lives less significant think about what you say to people before you say it! I used to be a big "positive" person! You would hear me say everything happens for a reason but how can I say that now? Someone in the universe chose to give Chloe a terrible diagnosis, made us go through labour, death, and organising a funeral so I can learn?? I’d rather not have the lesson thanks... What child would you give up to learn a lesson in life?

If your still reading thank you! Chloe's story will only close, when we allow it to and we won't. She will always be our first baby girl.. our child! Just because she isn't here doesn't mean she doesn't exist. She will be remembered until the day we die. We waited ten years to make a perfect life for her.. little did we know that nothing on the outside could have helped what was going on inside. We have no regrets with our decision the only regret we have is not spending time with her in my tummy and worrying about others too much. This year we are being selfish in some instances and not feeling guilty for it. "Fit our oxygen first, before helping others".

We ended a very much wanted pregnancy.

We have changed, parts of us are broken but we're survivors and we've survived so far.

The end.                                                                                 Zena Mason

If you require support after reading this blog please contact

Sands on 13 000 72637

Zena is a full time administration officer, wife and mother to 4 furry animals as well as one beautiful angel called Chloe. This journey has been hard but she says that she has met some strong women and made friendships with people from across the world.

She's on a mission to not let Chloe's memory disappear she was a very wanted child for Zena and her husband. Zena is very open about Chloe's story because it’s such a taboo and it's important to raise awareness for all mothers who have lost a child but specifically through medical termination. She says "if we can raise awareness we will then create more supportive friends and family and hopefully one day we won't need to suffer in silence and feel so alone".

A Grandparents Grief by Therese

I remember well my mother’s reaction to when I miscarried my baby many years ago and thought it was rather strange and was very hurt by it. It was something we never discussed and now a Grandmother myself, I wish we had done when she was alive. My mother’s reaction to me at that time seemed to be one of anger as she yelled a lot at me when I complained of the physical pain I was going through – the miscarriage took some time unfortunately. At the time I just couldn’t cope with the two children I had – not because I didn’t want to or because I stopped loving them, I couldn’t as my body would not let me move to far from my bed. I in turn became angry with her as I couldn’t understand why she was being what I perceived as “cruel”. She was trying to look after my children for me as best she could as they were very young at the time. Eventually I guess I forgave her on some level … but perhaps not.

It wasn’t until I became a Grandma myself that I started to have some insight as to why she acted the way she did. I went through a similar process when I lost two grandchildren to miscarriage at a time when I didn’t know my child’s partner was pregnant and I was not allowed to talk about it with them. I realised at that moment that my mother had been grieving. It had taken me many years to understand the reactions to grief in myself let alone in other people and this had come about through my training and other losses in my life and observing the reaction of others whilst grieving.

The love a Grandparent has for her grandchild is profound and different to the love that she has for her own children. I see it as an extension of something that I have achieved and being repeated into another generation where my only job was really to just love these grandchildren. So to lose a grandchild before even getting to know that grandchild was indeed hurtful and sad. I know I don’t need to feel guilty about my feelings but wonder if my Mother ever dealt with her feelings of grief – I suspect not as it was not the “done” thing in those days for either of us really and that in itself was so sad – compounding what was an already sad situation.

If you are a Grandparent going through the loss of a grandchild, please share with your child if they will listen to you or contact the beautiful people at SANDS and speak to someone there.

Therese Murphy - 2016

If you require support after reading this blog please contact 

Sands on 13 000 72637

About Therese 

Therese has worked in the field of counselling and community development for over 20 years. She has worked predominantly in the health and welfare field. She has worked in the primary school sector counselling children through a range of loss and grief and traumatic experiences.

Therese has also delivered a number of conference papers on the theme of children’s loss and grief and articles on stress management too. She also worked as a Sessional teacher in the TAFE system and the Private Sector in the Community Services area, including Mental Health Welfare for over 20 years. She is also an experienced Supervisor.

Therese has as a small business conducting Reiki, Inner Child Therapy, Meditation and similar therapies. She is also works as a Group Facilitator and teaches stress management and relaxation techniques within the local community as well as running workshops in the areas of trauma and loss and grief and related areas.

Therese is a published poet and has three children and four delightful grandsons. She enjoys nothing more than a good cup of coffee and the occasional glass of wine or bubbly. She is passionate about climate change and the environment, wanting a clean world for her grandchildren to grow up in and one where any type of violence is not tolerated.