Things I Wish People Understood - Part One by Suzanna

At 36, I’ve lost a parent, a friend and a child. There is nothing on Earth more harrowing than burying a child, even if you never had the privilege of knowing them. My husband, Ted, and I lost our beautiful baby Ella in January of this year. She was stillborn at 34 weeks. She was, and always will be, the most beautiful thing I’ve ever seen. I can’t bring myself to talk about the magic, and joy and horror of our experience. I can’t bring myself to share the details which are personal, and raw and sacred.

What I can do, is tell you about our grief and the things I’ve learnt.

There is abundant kindness in the world

It’s important to savour the great kindness that is apparent in times of despair. Since losing Ella, we have been touched by people’s tenderness and humanity. We have been shown support through flowers, plants, cards, texts, gifts, keepsakes, meals, phone calls, long distance visits and all manner of thoughtful gestures. Often, this kindness has come from the most unexpected places. We are grateful beyond words.

We are tortured by things which ought to bring us joy

Babies are a source of collective joy, especially among women. But for my husband and me, they are a form of torture – an excruciating reminder of our loss. I can’t see a pram or a pregnant woman without wincing. Sadly, babies seem to evoke in me a kind of emotional anaphylaxis – fear, paralysis, constricted breathing.  But babies are not like peanuts; they can’t be easily avoided. There isn’t a supermarket, shopping centre or café on the planet which is baby-free.

Leaving the house is Hell

Any journey beyond the sanctuary of my home involves walking the gauntlet of prams and mothers’ groups. Given that I live in a small community, it also involves visiting places which evoke memories of being pregnant, excited and full of hope. Finally, there is the horror of bumping into a myriad of acquaintances who, upon noticing that I’m no longer pregnant, gleefully ask how motherhood is treating me. 

Greif has no end point

At Easter time, I had a chance encounter with a bereaved mother whose son had been dead for 15 years. She knelt at her child’s grave, literally howling in despair. It shook me to my core. It made me realise this: time does not heal all wounds. We never stop mourning the loss of our children, and there will frequently be ‘triggers’ that reignite or intensify our suffering. Typically, the things which bring joy to others are our greatest sources of pain – Christmases, birthdays, Mother’s Day. This seems particularly cruel. Unfortunately, bereaved parents mourn more than the loss of their children. They mourn every milestone that ought to have been enjoyed.

Children are not replaceable

Let’s be very clear: children are not disposable. They are not replaceable. In the wake of Ella’s death, the most hurtful remark I endured came from a man – with three adult children, no less - who laughed and replied ‘oh well, you can always make another one’. Comments of this nature show a disgusting and disturbing lack of humanity. A baby is no less loved than a toddler or a teenager or an adult child. Next time you think that my child’s life doesn’t matter, consider which of your children you’d willingly trade or discard. A brief life is still a special one.

The conversation gets awkward

Bereaved parents – especially those of us who are still adjusting to our circumstances – often don’t know what answers to offer people. Inquiries as to whether or not we have children are painful to navigate. I can’t bear to tell people that I don’t have any children. Denying Ella’s existence dishonours her and causes me great pain. In saying that, I don’t want to tell strangers that my baby has died. I’d like to declare that I have a child, without any obligation to flesh-out the miserable details. But it’s deceptive and probably unhealthy to mislead people into thinking that you are parenting a living child when you’re not.   

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. 

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".

The Darkside of Childbirth by Ischa

You will remember that Ischa shared with us precious son Matisse and how she found peace. In this blog, Ischa voices more of her emotions during her journey.

'Losing my boy has given me the much-needed permission to voice all the emotions I have been carrying around since becoming a mother.'

I have only been a mother for three years, and yet in this short time I have suffered one breakdown, exhaustion fuelled depression and most recently desolation after the heartbreaking loss of my second baby pre-term. For me, childbirth has been in many ways traumatic, and I am still deep in the process of coming to terms with it.

A few months ago, attending my first post-natal depression group it struck me how angry I am. There I was hiding out in therapy with other brave honest parents, sharing similar stories of confusion, guilt, anger and disappointment. Yet it was pretty clear to me that most of us were not classic post-natal depression stories, that of the mother who can’t feel love or care for her child.

   

We are something new. Parents whose pregnancy, delivery and first years’ experiences don’t match the sanitised version of childbirth that now dominates western middle class culture. We are parents living under a silent code that the so called dark stuff, the struggles are not to be shared in the mainstream but rather kept hidden out of harms way in the privacy of therapy.  Like we have something broken in us that needs to be sorted out before we can come back into society.

Yet it wasn’t so long ago that childbirth was well understood to be dangerous territory - brutal, bloody and unpredictable. It was a given that woman and babies often died during or shortly after birth and that there was very little control over the outcome.  In those days people understood that childbirth was a force of nature or god, more powerful than them, and most relied on faith and community to get them through. There were no illusions then as to what it took to have a baby, and the work involved in early care.

Modern medicine has radically changed all that. We now live in a time where mortality rates are greatly reduced, giving birth is safer, defects can be identified in the womb, and people whom previously had no chance can deliver healthy babies. Yet in all this progress we have unwittingly created a new type of story, the ultimate childbirth fairytale. In this version, pretty much everyone gets pregnant, pregnancy is a joyful experience, mothers have more control over their delivery than often is the case and babies don’t die. Heroes are those women who deliver naturally, abstain from painkillers, breastfeed and bask in the glow of their new arrival.

Its true medical advancements, research and material wealth have brought amazing changes. There remains however many unknowns that lead to difficult and sometimes tragic situations. To experience this in a society that is in denial about its impact isolates everyday people who are really going through everyday experiences. My own loss landed me flat bang in the middle of this hidden world of the unlucky. A land filled with loving, emotionally and mentally strong people struggling to come to terms with broken dreams. There are those who can’t get pregnant or are facing IVF, parents who suffered multiple miscarriages, lost babies at all stages, faced death during birth and then the very many of us who are just not coping like we imagined we would be or how our friends seem to be. This hidden land is so populated with versions of the same core story that it is obvious to me we are the mainstream, not a marginal group whose only place is in therapy.

Losing my boy has given me the much-needed permission to voice all the emotions I have been carrying around since becoming a mother. The feelings of guilt, of inadequacy, helplessness and disappointment, of being jealous of others who seemed to be coping so much better than me. Of comparing myself and in doing so judging my perceived imperfections. I was finally allowed under the guise of grief to be honest about how painful and scary it is to give birth, how traumatic it is to feel alone in the messiness of it all, to want so much for your child and to try so hard to deliver it, to become a parent and not fuck it all up.

So I am angry and I am sad for us all. Who are we serving by marginalising the darker side of childbirth in favour of the soap commercial? What good is there in pounding each other with judgement guised as knowledge and illusions of perfection and control? There is the yin and yang in everything. For every success story there is one of sadness and loss. In every fairytale there is struggle and it is time for the truth to come out. Childbirth and parenting is just as messy, painful and demanding as it is joyful, fluffy and inspiring. By not telling our whole story, we are forcing each other to live an illusion, to hide our fears behind bright smiles, gloss and can do attitudes. To find our only solace in small secret therapy groups, disguising natural healthy emotions as post-natal depression.

Ischa

If you require support after reading this blog please contact

Sands on 13 000 72637

Ischa Roberts

I have many roles as a mother, wife and coach but my commitment is always to live my life in an authentic way. I am passionate about improving the human experience and helping people clarify their priorities and make conscious choices. I support relationships to create deeper experiences of intimacy and work to transform family life. Loss has been a powerful teacher of self-discovery, forgiveness, compassion and trust and I thank Matisse everyday for gifting me with this wisdom.