Things I Wish People Understood - Part Two by Suzanna

This is the second installment of an article I wrote. It discusses the things I have learnt – and wish others understood – about losing a child.

It is written in loving memory of our baby, Ella Rose Argyle (stillborn on 21 January 2017).

Death changes your relationships with the living

With every major loss I have endured, some relationships have developed or flourished, while others have perished.

In the weeks immediately following Ella’s death, I met a wise and compassionate mother who told me about losing her baby to SIDS. She spoke frankly of her experiences saying: People will surprise you, in both directions. You’ll experience amazing kindness, but you can also expect to lose some people from your life.

She was right. Despite the haze of my grief, some things have come sharply into focus. Grief strengthens and affirms some bonds. It destroys others. Sometimes, the parting of company has evoked fierce anger and bitter disappointment. At other times, it’s involved a gentle resignation and letting go.

You can’t humour people out of grief

It’s often said that ‘laughter is the best medicine’. Even in our darkest hour, it’s important to laugh – if only briefly and at the most absurd things. In saying that, you can’t humour people out of their grief. Several well-meaning friends have cracked jokes and offered cheerful, vapid remarks. They miss the mark – by a mile. They trivialise our loss, compound our suffering and demean our child. Sitting with us in our grief is the most powerful and generous thing you can do. Honour this moment; it is real and cannot be hurried.

It hurts to be excluded (when you have no living children)

A friend once observed that the hardest thing about being gay was the fact that he was excluded from the world’s largest club – the Married-With-Kids Club. While I can’t speak to being a persecuted minority, I certainly know about the pain which comes from loss and exclusion. Whenever my husband and I encounter a happy family, he says that ‘it feels like the whole world is having a party that we are not invited to.’

I haven’t forgotten

Sometimes, people avoid talking about children who have died because they don’t want to remind the parents. Let me tell you this: I forget all kinds of things, from where I left my keys to whether I’ve taken my vitamins. At my lowest, I shuffle from room to room, forgetting what I’m supposed to be doing. But I don’t ever forget my child. I think about Ella all the time – when I’m scanning my groceries, brushing my teeth, making small talk with the neighbours. Most parents love talking about their children because their children are the most special and amazing part of their lives. Bereaved parents are equally passionate about their kids. We want the chance to talk about them, albeit in an appropriate and supportive environment. 

It’s better to be awkward than absent

My husband and I feel sorry for people who encounter us. In fact, we often remark that ‘we wouldn’t know what to say to us’. Our culture offers no clear template for dealing with grief, or helping people through it. But here’s the thing: you don’t have to say anything amazingly profound or insightful. You just have to say you’re sorry for our loss and, if the relationship warrants it, offer your support. If there were ‘right words’ to offer the grieving, our poets and scholars and philosophers and clergymen would have found them by now. To my knowledge, they haven’t. For the record, I wrote the book on being socially awkward. I understand that there are few situations more uncomfortable than addressing a grieving parent. But that doesn’t mean you shouldn’t try. 

I recently saw an acquaintance who declared that she’d thought of me and prayed for me almost every day. All I could think was ‘that’s nice, but it doesn’t help me in any way’. If you don’t express your care, it does nothing for the person who’s suffering.  Sorrow tests our patience, but a bereaved parent will ultimately forgive a clumsy, awkward, ill-timed remark. They are less likely to forgive someone who is entirely absent in their darkest hour. 

Suzanna

If you require support after reading this blog please contact 

Sands on 13 000 72637

Suzi Maxwell-Wright

  

My name is Suzi. My husband, Ted, and I are trying to heal after losing our baby Ella Rose Argyle (21 January 2017). Ella was stillborn at 34 weeks, after what appeared to be a healthy pregnancy. As we declared on her headstone, Ella is ‘beautiful, longed for and eternally loved’. She is, and always will be, a part of us. My hope is that this blog will honour her precious life and help other bereaved parents feel less alone as they navigate their grief.

What are the Odds? by Emma

Jess writes for Sands again about her precious Emma.

"I didn’t notice when her movements slowed, I didn’t notice when they stopped completely."

Adam sitting next to Emma's special tree

100,000 to 1. The likelihood of a baby in utero catching and succumbing to the kind of infection my daughter caught. At 9am that Tuesday morning her heartbeat was strong, her movements were frequent. At 11:30am it felt as if she was breakdancing in my belly, was that the last time I felt her move? By the next morning there was nothing, just stillness. 

I had spent the day relaxing, after straining my back my Mother-in-law was taking care of my then 19 month old little boy for the day.

I didn’t notice when her movements slowed, I didn’t notice when they stopped completely. I didn’t know that within hours she had become completely septic from an infection that came from my body but was in no way my fault, or preventable. 100,000 to 1 my doctor told me. The number is astronomical, inconceivable! For so long I thought, how can I be that unlucky?

But somebody has to be that one:  Why not me? What makes me an exception to the number? My strength? My resilience? My ability to ‘look on the bright side?’ So far I’ve not seen a bright side and some days my strength is nowhere to be found but I am trying to make my daughter’s life mean something. I will forever have a profound bond with my son who has gets me through the ‘fog’ on a daily basis. My husband and I have such a deep understanding and respect for each other, nothing can tear us apart.

Emma has given me the courage and confidence to start studying which has prompted me to start moving on, to begin thinking about what I want to be when I ‘grow up.’ I want to make a difference in kid’s lives, I want to make every day their best day ever!

I want to be Adam and Emma’s Mum and I want them to always be connected. I want to give them siblings and I want to teach them about our beautiful angel in Heaven, always smiling down on us.                                                                                              

Jess  

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.

A New (And Happy) Chapter

Genevieve expresses her thanks to Sands and those that have supported her along her journey of grief following the death of precious Amalie.

     "I want to thank everyone at Sands and the wonderful mums I’ve met online 
      in other forums for their incredible support, care and empathy – both at the 
      time of Amalie’s death and ongoing."

It is 6 months tomorrow since my infant daughter Amalie died.  It seems both like yesterday and a lifetime ago.  I want to thank everyone at Sands and the wonderful mums I’ve met online in other forums for their incredible support, care and empathy – both at the time of Amalie’s death and ongoing.  I won’t go as far as saying I wouldn’t have made it through without you all, but I certainly wouldn’t have made through as well as I have done.  

I can honestly and gratefully report that I’m happy. Not just coping, but truly and deeply happy. A lot of credit goes to my wonderful partner.  It was not easy, but we worked through our grief together and have emerged far stronger as a couple because of it.  This is not for a minute suggesting that there is not still a lot of pain around our loss, and that there always will be.  We have just got better at integrating it, and at celebrating what we have rather than focusing on what we have lost.

We have decided to get married early next year. I know this seems like the wrong order of things, but the piece of paper didn’t seem so important to us before.  We are going to have the wedding at Amalie’s tree (her ashes were scattered in the roots as we planted it) so that she can be there with us.

And in other happy news, I am again pregnant and due in early January 2016. As usual, I’m as sick as a dog  (severe nausea and vomiting) and so the cat is out of the bag (apologies for the mixed animal metaphors).   This is my 7th pregnancy and they’ve all been the same in first trimester, so I wasn’t expecting to get away scot free this time!  So far everything is going as it should, and we’re very excited.

The tide has well and truly turned for us.

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

The NICU

Dani shares with us the time Jasper spent in the NICU and having to make the hard decision to turn off life support.

     "I could have stayed in that NICU unit for hours just touching his delicate hands 

      and stroking his arms and head, but we weren’t allowed. Many of the babies

       in the NICU are very sick and I know they try and limit contact until babies 

      can be removed from their special chambers. Regretfully I agreed to go back 

      to my room."

November 18, 2011, at 9.31am my sweet baby boy Jasper was born at 9.31am by emergency classical cesarean at 26 weeks. When he was born I didn’t get the opportunity to say hello, or to see him, he was in respiratory distress. The nurses showed us some photos before he was whisked away to the NICU unit.

It would be almost 4 hours before I got to see him for the first time. He was intubated and was on a positive airway pressure machine to help him breathe. He was so small at 785 grams but he was fighting. In his small humidification chamber I could see his tiny legs kicking and I could see him trying to cry – he couldn’t make a sound because of the breathing tube. I was told I could put my hand in and touch him as long as I sterilized my hands first. That first touch – his skin so soft, but so bruised and red from the trauma of his birth. But I didn’t even notice the colour of his skin – all I could think was that I had birthed a perfect baby boy – a fighter. He was naked, save for a tiny nappy that could have fit on my fingers, and a teenie tiny leg band that won’t even fit over my finger. The doctors told us he was doing very well and that they were able to reduce the pressure of his machine and that he was starting to breathe on his own.

I could have stayed in that NICU unit for hours just touching his delicate hands and stroking his arms and head, but we weren’t allowed. Many of the babies in the NICU are very sick and I know they try and limit contact until babies can be removed from their special chambers. Regretfully I agreed to go back to my room.

It took so much begging to the nurses before the consented us to go back down and see him. They finally allowed us at 7pm, but when we got there, it was not cheerful anymore. The doctor was about to call us. Jasper had stopped taking oxygen and was suffering pulmonary hyperplasia, meaning his lungs weren’t developed. The doctor gently explained that with the amount of time he had been without sufficient oxygen, the chance that he would get through this was remote – and the chance that he would ever be able to see, talk, walk or be without oxygen for the rest of his life was nil. They told us they believed that his death was inevitable and that we had a choice. To remove his life support and let him fly to God peacefully, or keep him on his oxygen and to see if he improved.

How does a parent make this choice? My mind was numb. Could I possibly live the rest of my life knowing that I agreed to remove care? The doctors said his death is inevitable but what if they’re wrong? Can I live with that? My mind was numb. I looked at my husband. Silent tears streaming down his cheek – still in his work clothes from when he bought me in that morning. My only thought was that I didn't want to be alone. ‘Can I please get my parents here’ I remember asking. The doctors agreed and our parents were called.

Somehow I fought through the fog and mind numbing pain to ask for Jasper to be baptized. I don’t know if there is a life after this, but I wanted to make sure my baby got every chance at heaven and God. Our parents came and finally, Corey and I knew it was time. Time to make sure our baby suffered no more. We knew. He wasn't fighting anymore, he was still. He was exhausted. They placed him in my arms and slowly removed his tubes. I held him tight and all of his grandparents came and told him how much they loved him, touching his hair. In the final moments of life, all he knew was love and comfort. In his mummy’s arms and hearing the voices of people who loved him.

He passed away in my arms at 7.31pm. Finally I was able to give him to his grandparents for a cuddle. They said their goodbyes and I sat there thinking – I had to switch off life support on my son. My first born. I did that. Nothing will ever change what I did. I hope he knew I loved him. I didn't want him to suffer anymore. If nothing else in his short time on Earth I wanted him safe and loved. And I hope he felt that.

The absolute soul crushing, heart wrenching physical pain that comes with losing a child, and the guilt I felt for ending his care – words can never make someone who hasn't lost a baby understand. The pain – it’s physical and it tears apart your heart. You literally feel like your heart has shattered and you are surprised it still beats. Each beat is physical pain. My baby was gone. I helped that along. And 2 days later I walked out of the hospital without my baby, slowly, bruised, and with a broken spirit.

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.

The helplessness of a Grandmother:

In this weeks blog, Lee, shares with us her precious granddaughter, Lexie, how she coped with her emotions when Lexie died as well as support her daughter.

My daughter, Alicia, was glowing as she told me she was pregnant with her first child.

The pregnancy had its complications, as in Alicia being diabetic. But she was very healthy and, being a nurse herself, the diabetes was completely under control.

Doctors advised that she would be induced at 38 weeks. On week 37 she had a scan and our beautiful little Lexie was bouncing about, fit and well. Four days later, an ECG was planned to check everything prior to inducing.

I was surprised when the doctor rang me and asked could I go up and sit with Alicia as her partner was away and wouldn't be back for a while. I was met by her work colleagues - nurses- who with tears in their eyes, prepared me for those unforgettable words- No heartbeat. A scan confirmed the worst.

It all seemed like some horrible dream. My daughter was experiencing every parent’s worst nightmare, and I was helpless. I held her as her world fell apart, not being able to process anything properly. Her partner then arrived and I couldn't help him either.

The following morning she was transferred to a bigger hospital where she was induced.

After a long 14 hr, difficult delivery, our granddaughter was born.

As I held Lexie, I questioned everything- why, what if?? If I could have taken her place, I would have in a second. Alicia was coping okay with the help of painkillers, her partner showed immense courage and support even though he was a broken man.

During the 3 days at the hospital, the staff were very understanding. We had Lexie christened, her hands and feet castings done, and she was left with her parents for as long as they wanted. Weeks later the autopsy report found no known cause of death, but it did occur either the night of the last scan or the following day. The doctor in charge said that if they had delivered her one week earlier, all would be OK. I don’t believe telling the parents such things helps- just makes them angry and hurt more.

So then the confronting reality of the baby seat still ready in the car, home to a freshly painted nursery and bags of baby clothes. On top of this, arrangements for a funeral, something else we were totally unprepared for. Questions- what they wanted, etc, too many decisions when no-one is thinking straight. It was a very busy time, on call 24/7 for my daughter who was struggling to make sense of anything. My own grief was put aside, I knew I had to be the strong one. Two months later I broke- my little girl was gone and never coming back. I think as a grandmother, the initial focus is of course on my own daughter and helping her cope. Realization of losing a grandchild comes later-

I go to the cemetery now and again, talk to Lexie, have built her a garden with pink and white flowers with 2 angels in it.

Day by day we get stronger and move forward with our lives. Lexie is always with me, in my thoughts. Things remind me, seeing little dresses in shops, Christmas presents I had already bought her. One of the most interesting facts is that most people avoid the topic, my daughter has had friends avoid her in the street. I understand that they often don’t know what to say but it really helps to talk about it.

Lexie’s death has rekindled my own experience with losing a child. Next month, 30 years ago, I miscarried at 12 weeks. At the time it was basically ignored- no-one spoke about it, life just continued. I was admitted to hospital to "remove the products of conception". It was a very cold atmosphere, and I remember one kind nurse came around afterwards and closed the curtains around me, telling me to cry until I couldn't cry anymore.

I felt like my heart had been ripped out.

If there’s anything I can offer - it would be to talk. Friends need to know they help more by acknowledgement and understanding, talking, asking questions and being a part of the whole thing.

Things do get better. Acceptance for things we cannot change. Hope for a brighter future.

You don’t ever forget, you keep the memory and eventually move on.
  

Written by grandmother, Lee.

If you require support after reading this blog please contact

Sands on 13 000 72637

 

Reflections of a father

The older I get the more I wonder if I will ever have kids of my own.  I wrote a poem a couple of years ago called “To the son I never knew”.  I never wrote it to share; I wrote it for my own mental health.  Since sharing it I've had those who were able to read it thanking me for writing it, and those who were honest enough to admit they couldn't read past the title saying though they could appreciate the courage  it must have taken me to write it, they couldn't read it, and I tell them it's OK.  Everyone journeys life at a different pace.  It took me 12 years to write that piece.  

Having travelled extensively for work and even getting married years later and gaining an instant family in that time I didn't really think about it much until I moved back to where it all began.  The familiar faces seeing those I saw growing up now with families of their own.  It felt somewhat surreal being in such familiar surroundings after so long seeing how everyone’s lives had developed in that time and wondering where mine was headed.  I was at home one day when it struck me, that I was living just down the road from the cemetery.  I didn't go there right away but when I did it was a week before his birthday. I hadn't even remembered how close to Christmas that fateful day was, he wasn't due until well into the New Year.  It's amazing how much and how well we can block things out from our memories to keep going.  I really hadn't had any contact with his mum since then, it was a really messy situation, and thankfully she has since married and has healthy kids.  I wasn't prepared to marry her despite her father’s insistence but I have no doubt in my mind we would have at some point, but to me her being pregnant wasn't enough reason to tie the knot.  Regardless of our relationship status though I would have raised that kid as my own.  I didn't just lose him though, I lost her too, and I think that was the hardest part.  In fact we all nearly lost her, thankfully though she found her way through.  

So after multiple major life changes in a short space of time I found myself reflecting on the last 12 years of my life and how different it would have been if he'd grown up calling me dad.  I've got nieces and nephews, a god daughter and sponsor kids but none of them require a daily commitment.  Though I feel so privileged being able to have the input I'm allowed into their lives.  

I've since written a second piece called “to my unborn son” inspired the song “Always Here For You” by KJ52.  I'm young enough to still have my own offspring though I also don't feel the need to.  I'm happy being able to assist in ways that I might not otherwise be able to if I had kids of my own.  Yet the thought still remains, if he'd made it ….. “so many memories that were only ever dreams.  So many dreams that never got to be memories”.

Neville Hiatt

To view Neville's website click here

'to my unborn son'

right now you are cells multiplying and dividing at a rapid rate

please know it doesn't matter if you are 18 before your first date

before you are born I want you to know

there's a good chance you will really love the snow

if you are anything like me you will feel more, than those around you

so be very careful with those that surround you

but most of all know that you are your own self

your not mine, or your mothers, you are your own self

you will make mistakes and that's okay

though the choices you make live with you till your dying day

you will grow up in a world different to what it is today

but with each day you breathe life, don't waste your time away

you will know heartache and pain, yet you will also taste triumph and gain

when you fall in love you will know the truth in these words

when you see her for the first time you will know

it doesn't matter what your grades are

some of the richest men alive today dropped out of school

yet in all things do your best and follow your heart, it's your strongest tool

when it rains be thankful for the nourishment of the earth

and when it's sunny a tan is not cool, look up your great grandfather he was a young fool

you will have more opportunities than ever before

but never lose connection with those closest to you

I've said it already but I will say it again

you will know sorrow and pain, but these are but the moderator to happiness and joy

everyone leaves this life at some point, so every chance you get explore the joint

but most of all your name is not your identity

it is simply a word to identify you but you will be known by how you choose to live this life.

Copyright 2013 Neville Hiatt

'to the son I never knew'

How do you mourn a son you never knew

how do you count the candles you never blew

how do you know you love a white Christmas when you've never seen the snow

so many memories that were only ever dreams

so many thoughts that will never be shared

I sit surrounded by all these flowers

and say your name aloud but it falls on deaf ears

I never got to hold your hand, or create artworks with you in the sand

I never got to teach you how to kick the ball, or watch you get up after your first fall

I sit in this field of flowers and trace your name etched into the rock 

and wonder how different my life would have been

would I have lived with your mum, would I have been a great dad

so many questions that will never be answered

you'd be 12 today, yet here you lay

12 years I could have spent calming your fears

12 years I've spent drying my tears

so many memories that were only ever dreams

so many dreams that never got to be memories

love dad.

Copyright Neville Hiatt 2013

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

Neville Hiatt

Neville Hiatt is a storyteller, a country boy at heart he grew up knowing what the word community meant. His radio career was cut short when he was medically retired before his 30th birthday due to someone not doing an adequate head check.  In the last few years he has developed his love of photography, and poetry and has just released his first collection of short stories.  Left battling depression, anxiety and chronic nerve pain as a result of the accident he has become even more passionate about sharing his life experiences in the hope of aiding others in their journey.  “It doesn’t matter who you are, what you’ve done, or what’s been done to you. It only matters what you do with your rainbow today.”