The Importance of Rituals

Genevieve shares with us the importance of rituals

"Previously, I hadn't found ceremonies around loss particularly helpful. While respecting the cultural importance and religious significance of grieving rituals, I hadn’t experienced their healing power. Until now. On reflection, I think the key for me was in the timing. "

Last century, while at medical school, I studied the various models of grief. 
here was a 5 stage model, a 7 stage model, the Kübler-Ross Grief Cycle and a couple of others, the details of which didn’t deposit firmly enough in my memory bank to now recall.

Being young and eager to know “the answers”, I asked “But which model is right - which one most accurately describes the grief process?”

Grief is messy. There is no right or wrong.  There is no neat stepwise process or clear signposts along the road.  Everyone does it differently.

I learned about Grief’s complexities and idiosyncrasies firsthand, very soon after medical school.  In the November of my intern year, my partner, Adam, died of testicular cancer. 

I continued to get better acquainted with Grief over the next 15 years, thanks to multiple personal losses, including five miscarriages.  So when I lost my infant daughter, Amalie in December 2014, I thought I knew what to expect.  But as it so often does, Grief threw me a few curve balls.  I discovered that not only do different people grieve differently, but that individuals grieve differently at different times. 

Previously, I hadn't found ceremonies around loss particularly helpful. While respecting the cultural importance and religious significance of grieving rituals, I hadn’t experienced their healing power. Until now. On reflection, I think the key for me was in the timing. 

Within a couple of months of losing Amalie, life around me had ostensibly gone back to normal. Most people were treating me as if nothing had ever happened. In a way that was good, as I didn't want to be wrapped in cotton wool, but on the other hand, it accentuated how far from normal I felt. I often felt quite isolated, cut off from the world as if I was trapped in a Perspex container watching everyone go about their daily lives but not being able to connect with them. The colour had been washed out of my life. I felt flat and empty.
Then three months after Amalie died, my colleagues organised a tree planting and memorial service.  After getting council approval, we planted a coastal banksia tree in parkland near where I live.

It was a really beautiful service. A few people talked and many people cried.  The skies cried too (a few brief showers which gave way to sunshine) and the birds sang.  I scattered some of Amalie's ashes in the roots of the tree as it was planted.  
  
It was an exhausting day but the ceremony was exactly what I needed at the time.  As well as the symbolic value, it reminded me that people really do care - the love and support by those present (in person and in spirit) was palpable, and it meant the world to me.  

After feeling increasingly disconnected, the emotional distance between me and those around me was all but obliterated.  Connection is a powerful healer indeed.

I’ve been visiting Amalie’s tree daily since the service. Visualising her ashes being incorporated into the root system of the tree as it grows and strengthens is comforting and meaningful beyond words.

I've woken up each morning since the service feeling that little bit lighter and more positive about the future.  I know there are still hard times ahead, but I'm ready to face them, knowing my family, friends and colleagues are there to help me through them and to catch me if I fall.

I still don't have any answers for my past-medical-student self, but I feel I've got to know and understand a new facet of the complex creature that is Grief, and for that I am grateful.

Genevieve

If you require support after reading this blog please contact 

Sands on 13 000 72637

Genevieve Yates

Genevieve is a GP, medical educator, medical writer and musician from the Northern Rivers region of NSW. After a long and difficult road to motherhood, her beautiful daughter, Amalie Ella, was born in December, 2014.  Tragically, Amalie died of neonatal sepsis after only four days.

Through her clinical work, teaching and writing, she hopes to she can use her experiences to help support both patients and other doctors in managing the complex emotions surrounding fertility issues and perinatal loss, and also encourage more open discussion in the general community.

Her website can be found at: http://genevieveyates.com

Learning to live again

Fiona is realising that there is hope and that life will continue following the death of her precious Manaia: 

After having the worst possible two weeks since Manaia passed away, I saw something that I believe was Manaia telling me that he was okay. And that I'll be okay. 

I know that the journey of grief is never ending and I'm only 3 months into mine.

Whether you've lost a child through miscarriage, stillbirth or neonatal death, you will always carry that loss with you, no matter where you go.

What I've learnt so far in this journey is that although the darkness seems overwhelming and at times it feels as if the grief will consume you, you we will get through this.

The sun in all its glory will rise again and again. You will learn to live alongside the grief and with time the grief will take a minor place in your heart. You will learn to live again, to love again, to laugh again and one day you will once again feel true happiness, just like you did before your loss. For you and I that day may not be today but every day that passes, each day you survive, is one day closer to all those wonderful things.

And if you are just beginning this journey remember that you are not alone, you are never alone. There are so many wonderful resources for support, never be afraid to ask for help. 

Fiona

If you require support after reading this blog please contact

Sands on 13 000 72637 

Fiona Mataafa

My name is Fiona and I am a 23 year old first time mother who lost my only child, my 4 month old son Manaia, after 128 days in NICU. I reside in Victoria with my partner Charlie. I hope by sharing my experiences as a bereaved parent that I'm able to, in some way, bring peace and comfort to others going through the heartbreak of child loss.

Preppie Tidal Wave

Danielle shares with us her emotions as she realises her precious son, Jasper, was supposed to start prep school.

Tuesday January 27th started out like a normal day. Rush rush, taking my 2.5 year old rainbow to Kindy, making sure we hadn't forgotten anything. The occasional tantrum on the way, mostly because he can't take his trains to Kindy. Hubby hadn't gotten back from night shift so I was doing the Kindy run alone. Driving to Kindy, I see schools open. I see children excitedly, and some not so excitedly getting out of cars for their first day back at school. I still haven't realised.

I get to Kindy; I get Harrison out of the car and help him inside. I am making his breakfast and a mum about my age comes in. The Kindy teachers start fawning over the new Prep child who used to come to the Kindy last year – “oh look at you in your new uniform – look how grown up you look! Thank you for bringing him in to see us!” And it hits me like a tidal wave. Jasper was supposed to start prep today.

I rush into the bathroom to clear my thoughts. I have to settle Harrison and get home – I think to myself. I manage to get through the next 10 minutes, made more difficult that Harrison wanted mummy to stay and read and cuddle him, but I needed to get out of there. But I couldn't hold it in all the way home. My chest feels heavy and the all too familiar and terrible ache in my heart. The ache that makes you feel like you can’t breathe or think. The ache that is physical and feels like your heart is dropping right out of your chest. I sat there and cried.

I cried selfishly at first. I cried because at first I forgot. I cried because I wish I didn't have to remember and that it isn't fair. Because I was the ‘unlucky one’ who didn't get to bring my baby home. Because after 5 years it still hurts. Because I will never buy Jasper a school uniform. But then I cried for his younger brother. I cried because his little brother will never experience the joy and jealousy of watching his older brother go to school before him. Because there will always be a big brother missing who he won’t play with – who won’t get to amaze him with thrilling stories of school and who won’t be there when his little brother also starts school. He doesn't have a big brother to look up to, to protect him.

When I pull myself together and get home, I soak in the bath and try to collect my thoughts. I think about the school we wanted to send him to and wonder how he would have coped. And the sad thing was that I couldn't imagine it. And sometimes that hurts more. I can’t imagine what he would be like today. I went on the computer to chat to a friend for comfort and like a knife through my heart I saw my Facebook feed – pictures of proud parents showing off their little prep kiddies in their new school uniform. Parents who have every right to be so proud of their children, but who unintentionally add to the pain. I had to close my computer. I couldn't interact on social media on this day.

Milestones like this hit me like a brick. And they are usually compounded by the lack of support I receive. My husband is my rock but after working night shift, I can't wake him up because I feel guilty. Many family members believe I am ‘wallowing’ and should just forget about him. It has been 5 years and I can never forget about the small little boy, who fought so bravely for life for 10 hours. I can’t simply ‘forget’ the little boy who isn't here, and I can’t put it out of my mind the milestones in life he can never achieve. Although I have a wonderful rainbow that brings me joy and heals my heart a little bit every day, he is not a replacement for the brave little boy I lost. His milestones are his alone and do not replace the milestones that Jasper should have had.

I cannot wait for my rainbow to achieve his milestones and I look forward to them every day, even if it does bring along a reminder of what we have lost.

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.

Grief is a difficult emotion to overcome....

Karen shares with Sands her story of her pregnancy and the delivery of her precious little girl.

I found out I was pregnant late September 2014 after I had begun to feel fluttering in my stomach and just feeling "a bit off" in general. The visit to the doctor after a positive pregnancy test confirmed this and both myself and my fiancée were completely in shock, we were excited but at the same time we had just gotten engaged and were planning a year to travel. Eventually the shock wore off and excitement followed and after our first dating scan hearing our baby's heartbeat at 7 weeks, we were in love. I became incredibly protective and wanted nothing more than to become a mother to this little human we had created.

I had a text book pregnancy; I was still going to the gym personal training, eating healthily and take my pre-natal vitamins. Morning sickness was minor but managed to strike without fail at 5.00am and 7.00pm each day. I started to get the tiniest of bumps and was feeling very at ease with life.

I went for my nuchal pre scan blood test on the Monday and my nuchal translucency scan was booked for the Wednesday. I was 12 weeks 6 days. I woke up that morning and I was quite apprehensive going into the scan and was very anxious. Looking back now perhaps I knew something wasn't right but I was also excited to see my baby for the first time. We went into the scan and the sonographer was very positive and outgoing, after a while I noticed the more images she took, the quieter she became. She finally was able to get an image of the nuchal fold, she said it was slighter larger than what she had seen before and would have to talk to the doctor and come back in 5 mins. 5 mins turned into 15 and both myself and partner tried to stay positive but my motherly instinct had kicked in and I was on the verge of tears knowing something was wrong. She returned after what seemed like an eternity to tell us that unfortunately the baby's nuchal fold measured 14.7mm which was the largest she had seen and that she had found a lot of fluid in our baby's heart cavity, brain and stomach. 

She then read us our risks with the combination of my blood test and age for chromosomal abnormalities which were perfectly normal to then reading our risks for the combined scan and blood test which put us as high risk as 1 in 6. At this point I broke down and we were able to leave. I went home feeling the saddest I have felt my whole life. I was able to get into the doctors straight away as we still weren't sure what these results meant, the sonographer was not able to give any more information. 

The doctor confirmed our worst fears that our baby was severely deformed due to an abnormality with hydrops. We were told the chances of the baby surviving in utero were non-existent and that we would need to consider termination. They were surprised the baby had survived for so long. We were completely numb; my world had just come to a halt as I tried to get my head around what I had been told. I was so angry and sad at the same time, why did this happen to us? Surely there was some chance that everything would be alright.

We were then referred to a private obstetrician (even without health insurance we decided that private was worth the money for the care we would receive) who confirmed that what we had been told was true and that in his own personal opinion for mine and my baby’s sake, we should proceed with the termination. We went home and broke the news to our families who live overseas and were visited by close friends who we had told about the pregnancy, while all very supportive it did not help with the grief and sadness we were both feeling. That Wednesday night was the worst of my life, having to come to terms with what should have been the day we could spread the word that we were pregnant with a healthy beautiful baby to knowing that in 2 days time I was going to be ending its life was unbearable. But I did not have a choice; I did not want my baby to suffer anymore.

We went in for the procedure on the Friday afternoon; the nurses were lovely and very respectful. My partner was not able to be with me prior or when I got out of recovery which I was initially not okay about but strangely I was okay once I had woken up from the general anaesthetic. I had a nurse sit with me the whole time to change my dressings and talk to me which was comforting. My partner came and picked me up from the day surgery at 9.30pm and we made our way home. Once I was home I felt completely empty and the tears started to flow, I was so confused and sad all in the instant. I cannot explain the emptiness from feeling so empowered by having this little being inside you to then not have it anymore; it's a feeling I hope to not have to cope with again. I had the following week off work to gather my thoughts and heal physically. 

We chose not to name our baby that we had lost, I was not sure at the time it was the right thing for me. We found out after further genetic testing that our baby was a little girl who had been diagnosed with monosomy x or more commonly turners syndrome. We were told it was a completely random event that could happened to anyone. This helped my healing process a lot as I nor my partner was to blame, we had done everything right.

Grief is a difficult emotion to overcome, it comes as it pleases and does not go away quickly. It has been less than two months since I lost my baby, I still have my moments when I will cry or get angry or avoid people who are pregnant or who have babies. I still have times when I feel sorry for myself and think that I should be nearly 6 months pregnant right now, showing my baby belly and starting to buy for my unborn baby. I know this feeling will pass and I welcome the day that it does. I am stronger every day and realising that life does not stop has pushed me to start moving forward. I know in good faith that I will be a mother again soon and I welcome that emotion any day.

                                  Karen 

If you require support after reading this blog please contact
Sands on 13 000 72637   

Karen Mackle

My name is Karen and I am a 28 year old living in Brisbane with my partner. I wanted to share my recent experience about the early loss of our first child in the hope that people can know that they are not alone and in their time of need I hope my story will help.          

Came to early, gone too soon...

Genevieve is a new comer to the Sands blog. Here she talks about her pregnancy, birth and death of precious Amalie.

After nine years and five miscarriages, I finally had a joyful and life-changing journey through a remarkably straightforward pregnancy last year. I had many new experiences.  I relished discovering that my clothes are too tight.  I was relieved beyond words to get the “all clear” on the 18 week morphology scan.  I discovered that, despite my best efforts, I became one of those annoying super-gushy types of pregnant women.

The most surprising aspect to me, however, was the reactions of friends and colleagues.  Without exception their responses were overwhelmingly positive and supportive, for which I was immensely grateful.  What intrigued me though is that many started to treat me more inclusively, seemingly because I was now “one of them”, a member of the “parenthood club”.  When I gently explored this with a few, they reflected that it has been difficult for them to juggle their desire to talk freely about their kids while being sensitive to my situation, and that at times it has been easier not to engage at all.  I know I've played a part in this too.  

While the drive to procreate differs between individuals, for many of us, myself included, it can be an overpowering one.  The primal reproductive instinct is at the core of many people’s sense of identity and life purpose, as well as having cultural, social, spiritual, financial and familial implications. 

The second half of 2014 was the happiest time of my life.  I was in the “club” and on track to fulfilling my lifelong dream.

But everything changed on 1st December, when a simple urinary tract infection developed into a serious kidney infection (pyelonephritis) and started spreading to my blood (early sepsis).  It triggered a premature labour and a mad rush to the nearest hospital (we were out in the desert at the time, hours from civilisation). I didn't quite make it and ending up delivering my own baby, just metres away from the hospital entrance.  That was certainly not part of my birth plan!

Considering her dramatic and premature entrance, baby Amalie did remarkably well at first.  Her birth weight was over the magic 1000g line and her vital signs were excellent.  We were cautiously optimistic.

Alas, four days later things took a turn for the worse and, tragically, Amalie’s tiny system was overpowered by E. Coli, just as my body was starting to win its fight against the same bug. 

Suddenly and cruelly, I was ejected from the green side of the reproductive fence.   

I've received amazing support from friends and colleagues, but, understandably, many struggle, not knowing what to say or what to do.  Some either resort to platitudes or avoid the topic completely which can leave me feeling even more isolated.  I've found that focusing on the intention rather than the words is the only way to shield my heart from unintentionally insensitive remarks. 

After all, rarely can a response make things better. What matters is the connection.   Parenthood club member or not, I know I need to maintain the connection with my family and friends to get through this terrible time.  And to remember Winston Churchill’s advice: “When you’re going through hell, keep going.”

RIP Amalie Ella.  Came too early, gone too soon.

I waited so long for you and had you with me so briefly, but every moment we spent together will be treasured forever. My heart is in pieces right now, but I will use the strength of my love for you to try to focus on being immensely grateful for your life rather than being devastated by your death.

You’ll travel with me forever, my darling daughter.

                              Genevieve

If you require support after reading this blog please contact 

Sands on 13 000 72637

Genevieve Yates

Genevieve is a GP, medical educator, medical writer and musician from the Northern Rivers region of NSW. After a long and difficult road to motherhood, her beautiful daughter, Amalie Ella, was born in December, 2014.  Tragically, Amalie died of neonatal sepsis after only four days.

Through her clinical work, teaching and writing, she hopes to she can use her experiences to help support both patients and other doctors in managing the complex emotions surrounding fertility issues and perinatal loss, and also encourage more open discussion in the general community.

Her website can be found at: http://genevieveyates.com

This is not my life.

One of our bloggers, Jess, has shared her feelings of suddenly living a different life the day her daughter died.  How everything she dreamed of when she was pregnant is now lost in another life.   

If you would like to talk to someone about your experiences, feelings or emotions, please know that Sands Parent Supporters are available 24/7. Details can be found on our website here.

Imagine you are a beautiful young woman, you are about to graduate university and there is an amazing job waiting for you. Your life is perfect, and the whole world is ahead of you. Then one day you wake up and you are broke, living on the streets under a cardboard shelter. You have the same name, you are the same person, but you are living a different life and you don't know how you got there.

This is what if felt like the day we lost our daughter Isobel. I was still me, but it wasn't my life anymore, and every day since has felt the same.

It starts the moment you leave the hospital, as you walk silently through the doors out into the day, emerging as a person you don't recognise. Your empty arms ache as you walk past the couple packing their new baby into their new car seat, and you imagine them driving home at 20km/h while peeping into the back seat every second and sometimes more. But you can't even look in the side mirror, fearing the reflection of an empty back seat staring back at you. This isn't your car, it can't be. The car you bought 9 months earlier with the extra safety, extra seats, and with extra height to make it easier to get your baby in and out. Instead this car was empty, it had no life anymore.

You sit alone in the backyard feeling tortured by the silence of your house, desperately wanting to hear a baby's cry, but instead you hear the children next door bursting out into their yard to play. You sleep in till 10:00 but you feel cheated by what used to be a pleasure. There are no sleepless nights or tired red eyes, as much as you wish for them every morning at 10:01. But the undisturbed sleep does not give you the extra energy it should. You lie in your ruffled sheets, your teeth feel furry and you're hungry, but you still can't move. You know the silent empty house is waiting for you outside the bedroom door, most especially that room you painted a few months ago. The room with the pretty pictures, the pram and cot you spent hours putting together, and the draws full of tiny clothes that will never be worn.  


Leaving the house is no escape. Walks to the beach are haunted by mothers groups taking advantage of a warm day outside with their babies, or the fitness mums power-pushing their prams or the mums teaching their toddlers to ride a bike. For the first few weeks you can't even look at them, you simply walk at a faster pace to pass them quicker, and you keep your head low so they can't see your tears. But after a while you learn to lift your head and catch their eye, that's when you notice the look on their face. They are thinking how lucky you are to have the free time to walk alone on the beach. How lucky you are to not have a heavy pram to push. If only they knew your pain, you think to yourself, if only they knew how much you would give anything just to push a heavy pram or sit on the shady lawn and boast about your daughter being in the higher percentile for height. The supermarket, the shopping malls, the train stations; everywhere mums are being mums, but you are just you, lonelier than ever.

You are thankful for the government cheques you are still eligible for, and you enjoy seeing "parental leave" on your fortnightly bank statements because in that small way you fit into a mum's world. But eventually the assistance will run out, and you won't have any choice but to go back to work. The first day is tough, you try and motivate yourself by doing your hair and makeup and wearing your nicest work dress, but the truth weighs you down - you shouldn't be going back this early, you should be at home with your baby. You check your Facebook in between work emails, and see new mum's posting monthly birthdays of their babies, 2 months, 3 months, 4 months, it's all going so fast they say. But here you are, at work, knowing a lonely house is waiting for you when you leave.

Friends who were pregnant around the same time begin to have their babies. Their healthy babies. You receive the arrival message, the type you never got to send, and reading the words "mum and bubs are doing well" feels like razor blades in your heart. Why does it seem so easy, and why did you fail? You picture them going home with their new baby, scared they won't know what they're doing, changing one hundred nappies a day, getting no sleep for the first few weeks and wishing for just 20 minutes of uninterrupted rest. They share their complaints about exhaustion with you, but their life is everything your life was meant to be.

The only thing that keeps you going is your hope that one day you will find your life again.

                                                                                             Jess

If you require support after reading this blog 

please contact

Sands on 13 000 72637

Jess Schulz

Living in quiet beachside Adelaide, Jess is a fundraising officer for Motor Neurone Disease SA, freelance graphic designer, and social blogger. Married for 5 years (together for 12), Jess and her husband experienced the saddened loss of their first child in 2014 at 40 weeks. Their daughter Isobel Lola, passed away 6 days after she was born. A perfect pregnancy ended with a cord prolapse during labour, and now Jess and her husband are walking the road of grief while trying to survive each day without their Isobel. Love, hope and support are the essence of their survival, and Jess has chosen to share their story on Sands to hopefully support other bereaved parents walking this road too.

The things we must do

Jessica continues to share with Sands her precious Emma - the realisation that the family would need to organise a funeral for their special little girl.

A few hours after our world came crashing down I remember sitting on our couch, trying to muster the strength to unpack the baby items from my pre packed hospital bag and it dawned on me, we would have to arrange a funeral!

Never in my life did I imagine I'd have to do such a thing, it was quite literally the last experience in the world that I wanted to go through on top of everything else that was soon to come.

We are extremely fortunate to have a terrific support system in friends and

family so we called on the help of my Dad and Father In-Law who made all the arrangements and footed the bill, which was an enormous gesture to us.

Late one night (or early one morning) shortly after Emma was born, I was pacing the house. Unable to sleep, unable to cry, unable to feel anything but the pain of absence in my heart and within my body. Furiously spiralling I put my emotions at that moment onto paper.

Her funeral service was simply beautiful. Her tiny white coffin adorned with a dainty flower wreath of pinks and whites, sat in front of us while her song played harmoniously around us. A song I'd sang to her almost every day throughout our 39 weeks together. We sat, the three of us and cried and smiled and loved our little girl, Adams little sister.
We had the celebrant read the words I had written for her that night, which I entitled “How”

                    How can you love someone you never truly met?

                    How can you miss someone you don’t really know?

                    How can she be gone?

                    How is this fair?

                    How. Can. This. Be!

                    How beautiful she was,

                    How special was our short time together,

                    How she’ll always be in our hearts,

                    How she gives us hope for the future,

                    How she’ll forever be our perfect baby girl <3

In the days and weeks after we said our final goodbye we banded together, Shane, Adam and I. We packed up the bassinet, put away all the clothes I had gotten out from Adam's hand me downs. Finally I uninstalled her baby car seat, I was starting to feel like a crazy person driving around with a baby seat but it was the hardest thing to take away. It was like forcing me to admit defeat, to admit that she would never need to use it.

Eventually the evidence of her presence within me faded bit by bit. The week my hair started shedding like it had when my boy was 3 months old, her birth certificate arrived. A friend described receiving her sleeping little girl's birth certificate like, ‘reminding me that she really was here, even for a short time.’

I've often thought that losing Emma was unfair but that’s not totally accurate. Unfair is having to share the news with friends and family, unfair is making funeral arrangements, unfair is, from now on, having to explain to people that yes we do have 2 children, only that one of them is in Heaven.

There'll always be these terrible things that we must do, I can only hope and pray that one day, the hurt will become more bearable, that we'll find some peace, until we meet again…                                                     Jessica

If you require support after reading this blog please contact 

Sands on 13 000 72637

                                                                                   

Jessica Lawless

Jessica lives in Victoria. She is the wife to Shane and a Mum to 2 beautiful kids - Adam, nearly 2 and Emma, born sleeping August 2014.
I like to practice yoga, cook, read and spend all my time being a SAHM with Adam. My family and friends are my whole world, there is barley a distinction between the two.
I hope by being so open and honest about my experiences I can help raise awareness and provide support for others.