Thursday, 21 August 2014

Remembering Stevie...

We are all in Sands because a precious baby has died.    Some of us have found it easy to talk about our experiences and our emotions.  Others have grieved in silence.    Some of us have the comfort of supportive partners, family and friends.  Some of us have felt very alone.  Some of us have felt judged -  our babies died in the early weeks of pregnancy - our babies had abnormalities incompatible with life - we shouldn't have been pregnant in the first place (too young, too old, too poor, unmarried ...)

Everyone in Sands has a  story .  "Stevie's Story" is about grieving a baby lost through termination.  It is a story full of pain and anguish, but also of support and hope. 


6 December 1968, Parramatta

Remembering Stevie means different things to me at different times. Let me walk through it as (chrono)logically as I can.

Just after his birth I was confused, distressed, deeply shocked. Shocked to see a perfect, albeit small baby at 20 weeks. I knew immediately I hadn't terminated a blob of cells unrecognizable as human. I had to remember him – remember him as he was – translucent – beautiful – a perfect baby. I had to remember him. He had to be a thorn in my side to remind me of my failure as a mother – a failure as a human being. So I named him Steven, Steven to remind me that what I had done was unforgivable – there was no penance that could atone. Being told Stevie was hospital waste, not acknowledged by his father, not acknowledged by society served to reinforce by belief my life was to be a continuum of pain. That it was. Even as I write this my heart is breaking.

The next day I went back to work. Stevie was locked deep inside my heart. Life went on – somehow and I don’t remember how. We were married a month later and Stevie never mentioned. It was as though he had never been conceived; never been born. Stevie was locked deep in my heart – I remembered him day after day.

The years passed and I no longer conceived. Was it any wonder? I had killed Stevie – I did not deserve another child. In February 1977 I was diagnosed with cancer on the uterus, two days later I was in surgery; 2/3 pf the uterus were removed and I was receiving radiation therapy– I was to be punished by not being able to have children. Stevie was locked in my heart and he reminded me of my iniquity day after day.
In June 1977 when I was in hospital for radiation treatment it was confirmed I was pregnant and was told I needed to terminate the pregnancy immediately; the risk of the baby being deformed, retarded would be too great. Various tests confirmed the child would be severely disabled. Termination would be the only kind thing. Stevie was locked deep in my heart and reminded me what termination was and what it would be. Would I kill another child? Stevie was locked deep in my heart. I told no one of the risk and refused to have the child aborted. In January 1978 my daughter was born; she was healthy – she had no disabilities. The amniocentesis had given a wrong result. Stevie was locked in my heart and I was afraid I would forget him now.

Two and a half years later my second son was born. Stevie knocked on my heart’s door reminding me of all the experiences I had missed with him. My children were what I was living for. Without them I was less than nothing. I could never atone for taking a life.
My rainbow children grew up, flew the coop and with that my purpose for living. There was no point in continuing. I decided on exitus and began to plan and collect the tools I needed … and Stevie was locked deep inside my heart.

And this is where a good friend joined the story. He showed me I needed to liberate Stevie and he started by saying his name. He validated his existence by saying his name. By saying his name he could not be forgotten and he also introduced me to Sands. I can see it clearly now, how – starting with preparing for Stevie’s first memorial and chatting with a Sands supporter at the same time step by step Stevie was carried into my heart – precious and loved – no longer locked up in its deepest depths.
I feared Stevie would eclipse my living children; I learnt by dividing my love between the children it did not become less – it grew.

Lacking any mementos from the time Stevie was born I made memories and to my surprise the Sands community rallied around me when I was down, whenever I needed it. On 9 December last year, dozens of mums in the Sands community had changed their profile picture to honour Stevie and I was overwhelmed by their kindness. Stevie became a part of my family – there to see – embraced in my heart together with my living children. Whenever I think of Steven I also think of my unnamed brothers – brothers I have named in my heart.

In the meantime, I have a number of things to remind me of Stevie, beginning with the copy of the memorial service. There is the Phoenix Ben a young friend drew for me, there’s Harry a lovely peacock given to me for Stevie’s 45th birthday, a Christmas bauble with a peacock feather in it, there is the NameArt and the pencil drawing and a pendant with the names of all my children. With or without these things I shall always remember Stevie. Since I have a pencil sketch of Stevie I no longer see him in that hospital bed gasping for breath. In fact when I think of Stevie I don’t think of him as a baby at all any more – no, he’s grown up. I now visualise him as a man in his mid-forties. I feel I have reached a milestone. I certainly know I'm at peace with that part of my past.

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

Wednesday, 20 August 2014

Becoming a Better Person

In this weeks blog Deb Saunders shares her story....

I am a wife to my gorgeous husband Dale, and mum to 5 amazing children, 2 I get to spend my days with, and 3 that I think of constantly, that are always in our hearts. I am a professional photographer with my own business, and I am a volunteer photographer for Heartfelt, an organisation that gives the gift of photographic memoriesto families with stillborn, seriously ill, or terminally ill children. This is my story.

My husband and I had been together for 11, and married for 7 years when we felt ready to start a family. Without any difficulty at all, we were pregnant with our first child, and Kayn was born via c-section, due to placenta previa, 2 weeks before his due date. We were so in love with this amazing human, and life seemed perfect.

Fast forward a couple of years, and we wanted to add to our little family, and again became pregnant easily, but at 8 weeks, I had some heavy bleeding, and after a visit to the doctor, it was confirmed that we had lost our baby. We were devastated, and I was even more determined to try again, and after the all clear a number of months later, we did, and after a few months, were excited to be pregnant again. This time, we made it to 11 weeks, and again lost our precious baby. I felt like I was doing something wrong, and it was all my fault! Of course this wasnt true, but I was so frustrated, and heartbroken, and didn't know if I could go through this again.

It wasn't long, but at the time seemed like an eternity, before we were pregnant again, and this time we made it through all the milestones, and I had a text book pregnancy. We found out we were having another boy, and Kayn was so happy to have a brother to play with soon!

But a week before Kayns 4th birthday, I had a terrible night, and couldnt recall when the baby had last moved, and rang the hospital to let them know. They reassured me it was probably nothing to worry about, but to call back in the morning if I was still concerned, which I did, as I had a feeling that something wasn't right, but couldn't work out what it was. I was 37 weeks and 5 days pregnant. I went down to the hospital, with my Mum and child in tow, and after what seemed like hours, and a number of scans, I was given the earth shattering news that the baby had no heartbeat.

I felt so alone, and rang my husband to tell him what had happened, I felt like I was on the outside looking in at myself, and I really dont remember much from that day apart from the feeling of complete and utter disbelief that this even happened, let alone to me. To us?

We went home for the evening, Im not sure why, or how, but we made it through, and the next day went back to the hospital to have a c-section, as I couldn't be induced, and I wasn't prepared to wait to go into labour, as this may have taken weeks. Ill never forget in the theatre when Kai was delivered, the silence, there was music playing, which I later found out was a cd by Jewel, but the silence, when there should have been a screaming baby, that was the moment I knew it was true, our baby was gone, and I would never get to hear him cry, and I didn't know how or if, I was going to get beyond this. Ever.

He was so perfect. 9lb 4oz, or 4.3kg, a big boy, looking just like his big brother did when he was born. We didn't get as many photos as I wish we did of Kai Thomas, I struggled to get out of bed, and was out of it on pain killers, and I guess others just didn't think of it, but I do have a few precious, irreplaceable photos of him, and all of us together.

This is my main reason for volunteering with heartfelt for the last few years, as I realise just how important it is to have those memories with your child. Helping to keep their memory alive is such a precious gift to be able to give.

Kai was born on a Wednesday, and I left the hospital on the Saturday morning to be at my other sons 4th birthday, and to this day I have no idea how I managed to get there and keep going, but I know I wouldnt have without Kayn, he really was my savior, that gorgeous little boy who loved me and needed me so much, and was the reason I got out of bed for so long when I just didn't want to.

Over the next 2 and a half years, we went on to lose a little boy Kody at 17 weeks, and a precious little princess, Kayla, at 20 weeks, and Im still not sure how we kept trying, and failing, and trying again, but in 2009, we were so blessed to have Kapri, who is here thanks to some amazing doctors, and the wonders of modern medicine. She was born 6 weeks early, after 2 blood transfusions in utero, and was very sick when she was delivered, but she was such a little fighter, that after just 10 days in NICU, she was well enough to come home, and is now a gorgeous, happy and healthy 5 year old, who started school this year.

I spent my 30s trying to have the children we so desperately wanted, 8 years of joy, heartbreak and devastation, and it was a tough journey, one that we will carry with us forever. I dont think the pain ever goes away, we just learn to make the most of the moments presented to us in life for what they are, the good with the bad, but I always carry those precious souls in my heart, and they are never far from my thoughts. I do believe I am a better person for my journeys challenges, and when times are really tough, I try to focus on my amazing children that did make it here with me, and spend some extra time just taking them in.

If you require support please call Sands - 1300 0 SANDS

Deb Saunders

My name is Deb, I am 43 years old, and have been married to the love of my life for almost 19 years. We have 2 amazing, wonderful children with us, and 3 more that watch over us and help keep us safe.
I am a photographer, and do a lot of work with families, which I just adore, and I love the stories I get to hear and be part of. I believe everyone has a story to tell, we just need to listen.
Through my experience, I found and now volunteer as a photographer for Heartfelt, an Australian organisation that gives the gift of photographic memories to families that have an ill or stillborn baby, or terminally ill child up to the age of 16. This in an organisation I am extremely proud to be a part of.
I am quite a social person, and enjoy nothing better than catch ups with friends over coffee, or wine, I love the beach, we are very lucky to live right on its doorstep, and I love craft of all kinds, and I am very good at starting lots of great things that I will finish one day!

Wednesday, 13 August 2014

Blaming Yourself

Sands blogger - Nicola Garcia talks about the cycle of grief...

A counsellor who has not been through loss cannot stand in your shoes.

Well-meaning family and friends can’t possibly understand the depth to which your feelings of despair run.

A person, like myself, who has lost a baby – does not experience it in quite the same way.

It is never an identical loss but human nature can be predictable.

That’s why we have cycles of grief.

That’s why there is advice that rings true for you.

That’s why there are things that can help you pull through.

As a Mother of loss, I can say quite confidently that feelings of blame arise, the finger mostly pointed at yourself.

Although people tell you it’s not your fault you wonder.

If I didn’t have that glass of wine.
If I didn’t eat all that cake.
Was it that time I fell?
Maybe I should have been taking it easy.
I shouldn’t have let myself get so stressed.
I can’t believe I complained about being pregnant, maybe the Universe heard me?  

The only thing we gain by blaming and shaming ourselves is a deeper sense of unease. A deeper sense of loss.  A deeper hole in which to dig ourselves.

Sometimes that is what we want. Sometimes that is what we need. To make the loss bigger, to make the loss engulf who we are. To let the loss become something that we can control.

To feel the pain and then stab ourselves harder.

So we fall down. To relieve the sense of needing to get up. To relieve the sense of moving on without our babies.

But life goes on.

Life circles you and time lightens your load.

Blame recedes.

Grief lessens.

But your baby is gone.

Your loss is still real.

And the world seems a little less understanding.

My new baby was in hospital recently. An emergency dash which was one of the scariest of my entire life. I thought he was going to die. I thought it was my fault.

And I let myself spiral.

He was fine and it wasn’t my fault.

But I was very quick to go there.

It’s human nature.

Whether we know better or not, we all go through it.

So as you blame yourself, think of the other Mothers who are going through the same thing; imagine them holding your hand in understanding.

Then breathe in and let it go.

It’s not your fault.

You cannot control everything in life.

And if you could, your love for your baby would have been stronger than any of your actions or thoughts and would have kept your baby safe.

Your loss and my loss is an unexplainable event that just is. That just was.

Find it within yourself to live life more vibrantly than before.

Then, when you and your baby touch hands again in heaven, you can tell them how life-changing they were, how you found out how deep your love goes and that they showed you exactly just how precious life is. 

If you would like to talk to someone our Parent Supporters are available to talk to: 1300 0 SANDS

Nicole Garcia
Nicola is a qualified social scientist, intent on studying the human race and finding out the truth about life. Her gift is passing on the information and helping others become the best versions of themselves. Her degree in creative writing makes her writing, your reading pleasure. Her passion for health ensures that you have up to date information on the latest and greatest ways to nourish you. She is a Mother, a Wife, a Daughter a Sister, A Friend and a beautiful human being intent on being the best person she can be.  A green -juice drinking, yoga positioning, meditation junkie who loves her life with a fierce passion.

Nicola’s first book, How To Become One Healthy Mama is available from here. You can also read her posts on motherhood over at her blog The Yogic Housewife 

Wednesday, 6 August 2014

The Birthday Dilemma

Lara Cain Gray shares her thoughts on how to manage your memories around significant dates:

Children’s birthdays can be emotional times for families in all kinds of circumstances.  Even for parents of active, healthy, noisy, kids, birthdays can bring with them a slight melancholy twinge as we recognise the all-too-fast passage of time and the awareness that our little ones are not so little anymore.   But one of the most challenging aspects of losing a baby is how to manage your memories around the dates that were significant to a child who’s no longer with you.   Do you celebrate a birthday that wasn’t to be?  If so, how?  

Just as there are a variety of opinions and beliefs around funerals and memorial services, there are many different ways in which birthdays are acknowledged after infant loss.  After I experienced a miscarriage, I chose not to ‘make a fuss’ and brushed the notion of ceremony under the carpet. In hindsight, I don’t think this was the healthiest response.  But it is such a fine line between what some may see as dwelling on the loss and acknowledging a life changing event such as a lost pregnancy or precious baby.  There is a lot of silence around pregnancy and infant loss, and this can leave us feeling self conscious, even indulgent, if we choose to commemorate significant memorial dates as the years go by.

I am now one of the lucky ones, with plenty of opportunities to whip out the bunting and pass-the-parcel games for my children.  The Internet is jam packed with printable invitations and charming matching napkins for children’s parties, but it falls terribly short of options when it comes to remembrance.  It’s peculiar, too, that some actions – like the lighting of a candle or playing a special song – have multiple significances.  It can be very difficult to create a meaningful, personal birthday ceremony that doesn’t somehow replicate a funeral.   But here are a few thoughts and ideas on ways to mark these difficult dates:

      Make or personalise a photo frame with design touches that help you feel positive: sunflowers, moons and stars, even party balloons.  Use it to keep a special photo of your baby, or your baby bump, that can be quietly added to your mantelpiece on special days – whether for public acknowledgement, or for your eyes only.   
      Keep a piece of commemorative jewellery close to your heart.  Engrave it with dates of significance so that no matter how busy you get or how far you ‘move on’ in your grief journey, you can privately pay your respects on special days, anywhere, anytime.
      Don’t be afraid to add your important dates to your calendars and diaries; even the public ones. 
      It may be painful at times, but when colleagues or family members are aware of your significant dates, they can provide you with space or support as required.  Some people may in fact be grateful that you have opened the door to a discussion they felt was taboo.
      Don’t forget the siblings.  If you have other children who are aware of the loss, it can be very healthy for them to join in with commemorative occasions.  Consider helping them to write a birthday card, poem or prayer for their brother or sister, especially if they need a little help in expressing their feelings.

There is no right or wrong answer to the question of how to commemorate the loss of a child; everyone’s journey of grief is their own.   But we should never feel that it is somehow weak or overly sentimental to acknowledge the birthday or other significant dates of a lost pregnancy or infant who is no longer with us. 

For Support please call 1300 0 SANDS

Lara Cain Gray
Lara Cain Gray (PhD) is a writer, academic, librarian, curator and mother-of-three.  The order depends on the day.  She enjoys writing social commentary, book reviews, travel tales and therapeutic ravings about being a parent.   Her words have appeared in a range of academic and popular publications, from the Queensland Historical Atlas to Brisbane’s Child.   She blogs as This Charming Mum - Books, Arts & Culture for the Sleep Deprived.