What grief does to couples…. and how you can help

Posted in Grief over child loss, Helping those in grief by Robyna

I remember it still so clearly. We had only recently been told Xavier would not make it. N and I were clinging to each other, drawing strength from one another, constantly checking that the other was surviving. Our beautiful social worker looked hesitant before she said it. But she said it anyway. “Some couples worry that their relationship won’t survive this. And some don’t. Those with strong relationships seem to get stronger. Those with problems, don’t always make it.” N glanced at me. The thought of losing each other in the midst of all this loss had never occurred to either of us.

When we first said goodbye, N and I literally clung to each other. We moved as one unit, intuiting want the other needed in that moment. But as time moved on, it become clear that we would grieve in very different ways. I worried that he didn’t want to talk about Xavier. I worried that he didn’t see a counsellor. I worried that he was burying everything deep within. He worried that I was obsessing. He worried that my constant writing and being a part of support groups was keeping me in stagnant grief. He worried that I was not letting go.

In the end we realised that we had to accept that our grief was different. No grief road is the same, even when you have shared the loss. We were able to respect each other’s ways of grieving, even when we didn’t quite understand it. Even now, we are different. I will visit Xavier’s grave and chat to him. N will visit and shed silent, still angry tears. I will talk about Xavier and whilst he will not, every day he wears a set of cufflinks engraved with Xavier’s handprint and a bracelet etched with each boys’ birthdate. We parent differently and our relationship has been able to bear that. We have been incredibly lucky to be able to make those choices within our marriage.

Children change relationships. They alter your life’s path. Grief over a child, perhaps even more so. There is very little support available to couples to navigate that journey. A dear friend, alongside two other couples who have lost their children too soon, are working with the Mater bereavement team to provide that support. But they need your help.

Seeds of Change is a support group for couples that have experienced the death of their child. Whilst SANDS and SIDS and Kids offer wonderful support for mothers and fathers, there is very little that specifically focusses on relationships. Seeds of Change seeks to change that by offering grief workshops that will help couples grow through their loss.

If you would like to help Seeds of Change, please vote for their dream at Sunsuper Dreams

If they are successful in getting the most votes this month, 50% of the funds will go towards much needed research into Stillbirth with the other 50% going to services for the bereaved.

21Aug2014

Poetry Thursday – Poetry in Grief

Every Thursday I will be sharing one of the poems I wrote whilst in the first year of grief. It is my hope that in sharing these poems, those that have lost a child will feel less alone. Those that have not, might understand a little of the pain.

These poems do not reflect where I am right now, but they are testaments along a journey.

They Wait

They wait patiently for her to return,

The laugh, the sparkle

They know it won’t be long now,

She will come back

They tolerate this stranger,

Who wears her clothes,

Who bears her shell,

But who has different eyes

They catch glimpses,

Sometimes she is almost in reach,

But she recedes quickly,

and they are left alone again.

They know time heals

They have heard it so many times

And so they wait

Patiently, for her return

She knows.

She knows they wait in vain

She tries.

She tries to be who they want

But she is gone.

She is with her baby now.

And someone new stands in her wake

Someone else, Someone new

Can you accept this newness?

Or will you continue to wait

For someone that no longer exists?

I created this image as part of “Capture Your Grief 2012”. The topic was “After Loss Self Portrait”

20Aug2014

Lucky

Posted in Grief over child loss, Parenting after loss by Robyna

Last night I grabbed a few groceries after Isaac’s swimming lesson. The boys were fractious but it didn’t stop Elijah flirting with a lady working at Woolies. She paused, played with him a moment, commented on his cuteness and said to me “You are so lucky”.

Perhaps I imagined sadness in her eyes and a wistfulness in her voice. I wondered if she had been affected by loss or infertility or a life that ended up in different place to what she had hoped for. I thought about asking, but I didn’t. I thought about telling her I could be luckier and have all my three boys with me, but I didn’t. In that particular moment, with dinner, bed and bath time pressing against us, I didn’t feel particularly lucky or grateful. But I know I am. And perhaps I needed reminding.

I view “lucky” with a different lens after loss. I feel lucky that we had fourteen days with Xavier. I know that not everyone gets that much time with their little one. I feel lucky that he held onto a glimmer of life for twenty-four hours after we found him without breath. A day is longer to say goodbye than many people get. I feel lucky that we were so well looked after by the Mater and the beautiful social workers there. I feel lucky that I found a group of bereaved mothers who understood and understand me. I feel lucky that I have been given space and support and permission to grieve. I feel lucky that I have this place to remember Xavier and write in his memory. I feel lucky that I have the words to write. I feel lucky that Xavier’s memory is held precious by so many dear to me. I feel tremendously lucky that I have two living children to hold and kiss and adore.

I cannot count the number of times I have spoken to other bereaved parents and we have used that word – “lucky” – to describe various aspects of our experience. It’s always accompanied with a rider – “it’s funny what we think of as ‘lucky’ now.”

Before losing Xavier I had a different view of luck. I didn’t really believe in it. Someone would tell me I was lucky and I would respond with a glib “Yep, and the harder I work, the luckier I become.” I had a perception that you made your own luck and that bad luck was generally predicated by bad choices.

Age and experience has taught me that life is not so tightly controlled. That fate can be cruel and that luck plays a larger part in my life than I might like.

I look at my darling boys and I know, I am incredibly blessed and I am very lucky.

15Aug2014

Poetry in Grief

Posted in Grief over child loss, Poetry by Robyna

After Xavier died, I wrote poems on a near daily basis. I had to express myself creatively to make any sense of life. I felt pent up with emotion and in need of release. I wanted to lash out and scream and make people understand my pain. Poetry allowed an outlet for that frustration. A figurative punching bag with the English language delivering hooks and jabs. Up until that point, my experience with poetry had been the clumsy, angsty words of a teenage girl. All darkness, conjured up emotion and the firm belief that no one could understand the complexity of being me. I am sure the words I scrawled, words that seemed so unique and intensely important at the time, have been echoed in girls’ diaries since the beginning of time. They were laboured words, teased out and poured over. Xavier’s poems have almost felt like gifts. As though the poems already existed and I just stumbled upon them. An unseen muse whispering the verses in my ear. I have held those poems close, feeling them too private to share with a broader audience. When I wrote them, the emotions were so raw and they bled onto the page. I read them now and I am startled by their clarity. When my mind raced with so many mixed-up feelings, when everything felt fuzzy around the edges, these poems have delivered my feelings back to me sharp and in razor focus. When I read them now I understand my initial reluctance in sharing them. I can recognise the protective instinct.

Today, I met with a beautiful group of mothers. We share our children gone too soon in common. I decided to share with them a poem I wrote on strength. It made me realise that these poems have power and the potential to give voice to unspoken emotion. They can give form and validation to the mess of grief feelings. And I think, despite the fact that doing so makes me vulnerable, sharing them feels right.

So I am sharing the poem I shared with those beautiful mothers today. I will be sharing the poems I have written over the next few months and collating them into a page on this site.

Strong

“You’re so strong” they say, “I couldn’t get of bed” they say
They tell you “I don’t know how you are living day to day”

They think that I am coping – this smile that masks my grief.
They think that I am coping – and it’s met with great relief.

But you can’t see inside me and you can’t read my mind.
And you can’t fill a hole that a baby leaves behind.

I have moments when everything feels like it will be okay,
But I need you to know that I don’t always feel that way.

It’s only been four weeks and years stretch long ahead,
And sometimes when I’m smiling, inside I’m feeling dead.

You ask me if I am “better”, as though recovering from some disease,
But I have lost a son and gained a pain that will not ease.

How would you feel if your child had been taken away?
In a matter of short weeks, would you really feel okay?

His life was cut short, but my love still lingers on.
And for the rest of my life he remains my son.

The time you have with your children you never will regret,
And though our time was short, I never will forget.

He is no less real, no less a person than your living child.
And the tiny time we had him does not render the loss mild.

I might say I see him in the sunshine, hear him when a bird sings,
But I wish I didn’t have to grab on to these remote and abstract things.

To you it seems like beauty, like I’m finding ways to live,
But I’m only holding on to the little life can give.

Half the time I don’t know what I actually feel.
Most of the time the fact he’s gone seems horribly surreal.

And I scream, I cry, I rage but I do it all in silence.
And my exterior seems serene while
my interior’s in violence.

But these thoughts are too dark, too strange for me to say aloud.
And so I stay silent, and you say “You’re strong – I’m proud”

I know you’re trying to help, that you don’t know what to say.
But please don’t believe me when I reply that “I’m okay”.

7Aug2014

The Grief Words

Posted in Connecting with Angel Child, Grief over child loss by Robyna

Your world shatters. You find yourself alone. You see pity and sympathy in the eyes of family and friends, but they do not understand. They hurt, but their hurt is not your hurt. You search for others who share your story. You try to normalise the thing that is so far from any sane normality. You find them. Online and in person. This community of loss. This beautiful and fragile community of tattered souls. Facebook groups, blogs and forums dedicated to babies and children stolen from their mothers’ breasts and their fathers’ embraces. And there is such aching beauty. Words strung together as delicately as beaded necklaces. Artwork that touches deep nerves. Poems and images that steal your breath as they gift you tears. Enormous and important things achieved in the name of children who may no longer live on earth but whose impact is great.

But through this thin veneer of beauty, do we hide from ugly truth? Do the newly bereaved come across these sites and wonder where the pain is? Where the heart-stopping, gut-wrenching, puking, sobbing messes are? I don’t think I have ever written publicly about the true pain of grief. The darkest of days, where even the weight of water in the shower was too much to bear. When my skin crawled and the ache in my arms to hold my baby felt like the loss of a limb. When the only relief could be found in sleep and the sleep would only come when I was too exhausted to think. I cannot convey in words the pain of those days. I remember wanting words. Yet, no words were horrific enough to capture the pain. I do not swear, I never have. But even the worst words I knew could not scratch the surface. There isn’t even a word in the English language to describe a parent whose child dies. There are orphans and widows and widowers but no noun for those who lay their children to rest. And as I searched for a word ugly enough to sum up the wretchedness I felt, words beautiful enough to describe my baby boy also remained elusive. Perhaps that is a struggle felt by many who populate those online groups and forums. How do you express a pain so horrific in the place you are recognised as mother to your child? How do you articulate the depts of hurting when you also want to celebrate your baby? How do you find language that isn’t repressible and offensive to describe something so bitterly broken? How do you reach out and seek comfort when you want to spew barbed wire and bile and venom? How do you tame the rage and the anger to a gentle simmer to remain polite amongst people who share common ground but are, for the most part, strangers?

For those in their grief who find comfort from the beauty, but wonder if they are lost alone on an ugly path. Please know, you are not alone. There are just no words to capture the depth of the hurt just as there are no adequate words to capture the enormity of the love. For the pain and the grief run deep because the love never ends.

27Jul2014

Being Okay with Being Okay

Posted in Connecting with Angel Child, Grief over child loss by Robyna

On the third Friday of each month, I meet with a group of mothers. Like most mothers groups, we all come from different walks of life, but have our children in common. Unlike most mothers groups, our children do not play underfoot or interrupt our conversation. If anything, our conversation keeps our babies alive.

We are each at different stages in our grief, some of us have seen years pass and some of us have welcomed more children. In this group we are understood, in this group we are not judged and in this group we are all recognised as mothers first and foremost, no matter where our children reside. There are a few of us at a stage in our grief where our new lives feel comfortable and our loss has taken us to passions and purposes that feel overwhelming positive. This in itself is confronting. Did our babies die to provide this new direction? Did they leave so that we could learn hard lessons? How do we reconcile the immense hurt and holes in our lives with the gratitude for new friends, an expanded outlook, and in some cases, the formation of badly needed charities that provide support and research?

Around six months after Xavier died I came across an online loss support group that asked “if you could change your past, and not go through your loss, would you? Think about it carefully before you answer”. At the time, I could not conceive any bereaved parent needing time to answer. My baby, my baby back in my arms in an instant is all I could think. What a ridiculous question to pose I thought. But there were those that were further in in their grief that said that they wouldn’t change their lives. That they had arrived at a point in their journey where they had learned a great deal and had made a kind of peace with their loss. I could not understand that viewpoint at the time, but I can now. I still think it’s the wrong question to ask. An impossible hypothetical with no easy answer. When you reach a point of being okay, not with your loss, but with your life, I think it’s indicative of integration rather than acceptance and certainly not a preference.

The guilty thought “if my baby had died, I would never have met these amazing people” becomes “my baby, their life and their story, which are inextricably linked, led me to these beautiful people”.

The worry “maybe my baby had to die for me to learn this lesson” becomes “all our children teach us important things, mine taught me some of the most important”.

The concern that “my baby’s death has led me to pursue long forgotten passions or renewed my creativity” becomes “I have figured out how to parent my baby – I have created connections with my child.”

The thought “I would not have founded or supported this charity unless my baby died” becomes “every life leaves a legacy and the length of that life in no way correlates to the power or impact of that legacy. My baby continues to make an important and positive impact in the world.”

As a bereaved mother, I feel guilt over so many things. But I will not feel guilty about coming to a place of peace. I will not feel guilty about finding purpose in parenting my boy no longer here. I will not feel guilty about my life reaching a place that feels okay. I worked too damn hard to get here.

29Jun2014

The days belonging to him

Posted in Grief over child loss by Robyna

Late June in Brisbane and the days are brilliant. Chilly mornings giving way to bright sunshine skies. The air and the wind and the way the grass smells unlocking memories of him. These days when he shared the earth.

Come the 6th July the other memories will come. Unwelcome and unbidden. The moments that stole him away replayed in my mind. But for now, I am not thinking on that. I am remembering those two weeks he was here.

Recalling the smell of him and the soft peach fuzz of his hair. Memories I thought I had lost but that are carried in the air late June. I remember the cosy fog of the first few days. Sleep deprived and elated. That excited, bewildered, other-worldly place that belongs only to parents of the very newly born.

I remember proudly showing him off, so new and tiny. I remember friends holding him and drinking in his freshly bloomed loveliness. I remember fighting through a fog of sleepiness and taking him to meet his cousins one evening despite a day full of activity. Oh, I am so glad I did.

I remember feeling content and whole.

I remember gazing at him in adoration and asking my husband the most rhetorical of parental questions – isn’t he beautiful?

I remember the way he breathed a little too heavily and the midwife who worried and the doctor who did not.

I remember nursing him and thinking I’d give him the world. I remember calling him “my little love, my turtle dove”. I remember him curled up, cuddled into Ns chest, oblivious to the world as he slept. I remember singing him silly little songs and tracing his features as he slept.

Not so long ago, I was unable to recall these simple things. They would have been a dagger in my broken heart. But today, as the sun reached out and touched the grass, offering respite from the wind’s chill, the memories came flooding back. And I could accept them with open arms and be thankful for the 14 days he graced the earth.

A different kind of Birthday

How do you celebrate a birthday for a person that you can no longer see?

Invitations
There will be no carefully curated list of people who will share in your birthday. No beautiful invitations to send to friends and family. But there are those that will accept the unwritten invitation to share in your birthday and remember you. Those that miss you too. Those that grieve with us.

Decorations
There will be no balloons and streamers hung. No theme will define your day. But I have made this hanger. It reminds me of you and it decorates your brother’s room.

Presents
You won’t unwrap a train set, or open your eyes to find your first bicycle. You won’t be spoiled by those that love you with earthly gifts. But I made you this prayer flag, as I have done in the past and will do each year. It is my gift to you and yours to me.

Songs
I won’t sing you happy birthday. There will be no chorus of hip, hip, hooray. But I wrote you this poem.

Candles
There won’t be two candles atop a cake. You won’t try to blow them out with your baby breath. But I will light a candle for you and others might too.

Birthday
There won’t be a birthday party tomorrow as others might know it. But I feel your birthday to the very depths of my bones. A birthday is for letting someone know how much you love them. And I love you forever, my baby boy still.

8Mar2014

Becoming the New

Posted in Connecting with Angel Child, Grief over child loss, Parenting after loss by Robyna

I’ll tell you a little shared parenting secret. Children don’t get easier with age. You just get better at parenting. It starts to sink into your skin and becomes an integral part of who you are. Children change your values, your viewpoint and your priorities. As a first time mother, I was faced with a lifestyle shock, an identity crisis, a love more intense than I had ever imagined and a fatigue I would never have guessed existed. All this whilst figuring out how to mother a tiny dependant being with no eloquent way to express his needs. It is a lot. Sometimes I think we forget just how much. But eventually I was reshaped and settled into motherhood. I no longer needed to analyse it or agonise over it. It simply became me – a much quieter and more assured part of myself.

The grief I felt after losing Xavier was the inverse of the joy I felt when I first held him. Where there was once hope, there was despair. Where there was joy, there was only pain. And where a baby once was, a huge, yawning, aching gap. But settling into grief and having it become a part of who I am is, in many ways, like the gradual acceptance of motherhood itself into my psyche. At first, there is violence and confusion. A world rocked and emotions displaced. People would tell me that the death of my child would change me – that it was inevitable. And I would nod and inside I would scream “No – I don’t want it to change me, I don’t want to lose who I am.”

“I will not let this loss define me,” became a mantra, an anthem, a steely promise. But children change you. Experience changes you. Xavier’s life changed me and Xavier ‘s death changed me. In retrospect, I was clinging to the idea “I won’t let this loss defeat me”. The darkest days of grief drag you down and under. Leave you gasping for air. And you fight. You literally fight for your life. The length of that dark time varies from person to person who has experienced the death of a child. But the weight of it, the almost unbearable weight, seems a consistent experience. Gradually it eases, the grief becomes gentler and the memories less intense. The double edged sword of distance, granting a measure of peace whilst at the same time blurring the memories of a much loved little face.

But the fact of his absence remains. That fact is no gentler. I have grown to deal with it in a gentler way, but the bald facts remain as horrific as they did at the start. That will never change. When he left he set my life on a different course. Everything changed in that moment. And forever I will be bereaved mother. He is not forgotten. He changed everything.

Not long after Xavier died, a dear family member gave me a silver X. I had his handprint stamped on a silver heart and I found a sunshine pendant. Those three charms hung from my neck and I vowed I’d never wear another necklace. But as time went on, I felt the need to wear it constantly lessen. Xavier had become so much a part of me that the physical talisman seemed to lose the grave importance it once held. Xavier moved into a safer place within my soul. A quiet and assured place that would never give him up. I still wear the necklace sometimes – now not so much to feel connected, but rather than to wear something of him with pride.

I believe he is safe within my story and my story safe within his. He has thread himself through the fabric of my narrative and the narrative of others. He will be remembered. He will live on. For my words belong to him and when I write, it feels like his words whispered in my ear.

31Dec2013

The New Year

Posted in Grief over child loss by Robyna

Last year I felt conflicted as the year changed. I had not expected it. I knew Christmas was going to be difficult and prepared myself but I was surprised by the gamut of emotions the change of year would bring. To say goodbye to 2012 was to say goodbye to the only year Xavier had ever known. The step into a new year felt like leaving him behind – a huge gulf of time ellipsed in a single moment. Throughout my grief I have been impatient for the next phase to start, for the pain to lessen and for healing – in that regard I was glad to leave the hurt of 2012 behind. Yet I could not bid the year “good riddance”. As much as it was the year that stole my son, it was also the year that gave him to me. It was a year that saw friends engaged and married. A year where other little ones with kinder futures were welcomed. There was still so much joy in that year. Newly pregnant, I was eager for the months to pass and the safe delivery of Xavier’s younger sibling. I was keen for the making of happier memories.
But even all of that felt like leaving Xavier behind and placing trust in an uncertain future. Last year, I stood on a precipice, took a deep breath and leapt.
One of the things I struggled with after Xavier’s death was that my happiest memories were behind me. That true joy would never visit me again. A dear and wise friend has said this about grief – the heart is the only vessel where the capacity for fullness is not diminished by its brokenness. And so it is. A broken heart can hold untold joy and love. I fact, a broken heart is an expanded heart. So if I feel utter joy, it is not because my heart is mended but rather its broken form holds more than it ever did before.
Now we stand on the precipice of another new year. A year I look forward to with hope in my heart and love in my soul. A year that will bring joy, and no doubt some tears. A year to laugh with my family, to kiss my boys and to hold them close. A year to learn, to embrace life and to spend time with those I treasure. Another year on this blessed earth. How wonderful. What a gift.