My normal is different

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

Over the past few weeks I have met quite a few new people – both online and in real life. There is always the hesitation over when and if I reveal how many children I really have. The pause before I tell my whole story and the silent steeling of my heart as I await a reaction. People are kind. I have found this to overwhelmingly be the case. But I always wonder – what do they think of me now? How has their perception of me change now that they know I have a child who was lost to SIDS?

Before Xavier died, I knew no-one who had lost a baby to SIDS. In one of those cruelly ironic twists of fate, my mother told me a few days before Xavier died how she had bought a red nose pin for SIDS & Kids. She said “Can you imagine it?”. I scoffed and said “that would never happen to our family.” And I truly believed it – I did not think SIDS could be a possibility within our family. I wonder if other people think the same thing. I wonder if, behind the kindness, there remains a belief that a person who loses a baby to SIDS must have done something wrong. I would instantly forgive anyone who thought that, but it does make me hesitant to talk about Xavier’s story. I have been through the guilt and the judgement and I have arrived on the other side. Most days, I no longer blame myself. But when I tell the story to someone new, when it is fresh and shocking to them, I do fear judgement. My story isn’t a pleasant one to tell or to hear. My normal is different.

I have placed Xavier’s story in the world. I have written about him here and in other places. A quick google of my name will reveal Xavier’s story before my own. As someone who has just started a new business, this worries me. Will people judge me before they know me because my son died? Will they assume that I am less capable due to grief? Will the words that have bled onto internet cause me harm in the future? I think any blogger that writes about intensely personal things faces that question. What will people who don’t know me think of me? What image have my words constructed? Will I be seen as brave and helpful? Or as an over-sharer who should have taken more care of her online persona? If Xavier hadn’t died, I may not have returned to the embrace of words. If Xavier hadn’t died, my google search results would look very different. If Xavier hadn’t died, I would be travelling a different path and perhaps in a different career. But he did die. And I needed those words. And I wanted to share those words with people who felt something they could not articulate. I wanted people to feel less alone. Because their normal is different.

My littlest baby is growing up fast. Toddling and talking and spending time outside of my care. He is happy and thriving and he and his brother are the lights of my life. And I am filling the time busy-ness. I am finding myself feeling anxious about what I have set out to achieve. And I berate myself for feeling this way. I feel as though I waded through the raging seas of early grief and managed to swim. That I should be able to conquer anything. But I was careful with my mental health in those early months. I exercised. I watched what I ate. I slept. I talked things out. I took time to appreciate all that was beautiful. I have let many of those things slip. And keeping my mind healthy needs all those things. Grief has no time frames. You don’t wake up and find it’s over and done with. A little over two years ago my normal changed. And it’s still different.

15Feb2015

Sitting with Sadness

Posted in Grief over child loss by Robyna

I was sad the other day. Not aching grief, just sad. Low. At first I wanted to reach for grief as an explanation. But I know how grief feels. I can feel it’s distinct pull. This was apathy and malaise and exhaustion and not being bothered. I desperately wanted to feel something else – I had things to do and words to write but it all felt impossible with the weight of this sadness. I tried to bully myself out of it. I am convinced that I can think myself out of any situation. That if I tell myself to snap out of it, I will. Sometimes that works, sometimes it doesn’t. It didn’t work the other day. I tried counting my blessings. It just made me feel more miserable that I was sad in the face of blessing. Sadness feels like failure. We are not meant to sit with sadness, we are meant to strive for happiness. It has become the default expected emotion.

But maybe it’s okay to sit with sadness sometimes. In the darkness of my grief I sat with sadness as a constant companion. It was not possible to think myself out of it. I could not shake it off like a skin, it had permeated my being. And I was given permission to be sad. The saddest thing I could imagine, a baby dying, had happened and it happened to our family. There was no pressure to be happy – to count my blessings and put away the tears. Sadness was to be expected and it was okay. This permission to be sad taught me something. I don’t think it’s fair to expect our emotional lives to ride on a constant high. Constant happiness sounds like a great idea, but expecting it and panicking when it’s not our reality, seems to cause more angst that happiness. There is a lot of guilt associated with being sad. Immediately my mind asks “What right have you to be unhappy?” When I had a very good answer to that question, I could let the pressure go.

There are times when sadness feels like sitting in a great big hole. People pass you, shout down and invite you to come back up. Someone might throw down a ladder or the tools they think you need to build one. And then, once in a little while, someone might come down and join you. Say “I know you won’t be down here forever, but for just a little while, I will stay with you and keep you company.” And with that kindness, the hole doesn’t seem so deep anymore.

I don’t want to feel miserable. I would prefer happiness. But pushing myself to be happy when I feel blue isn’t the answer either. I can’t tell myself to be happy. I can do things that make me happy – and that’s generally where the magic is – to find those things that bring me joy and immerse myself in them. To write, or to create, to dance, to laugh or to read. Sadness is a part of our human experience – it’s not a sign of failure, it’s a sign of humanity.

5Jan2015

Christmas and Regret: Did I give him enough?

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

The Christmas tree has been packed away. The lights have been stowed. Stockings no longer hang and wreaths have been taken down for another year. Christmas is well and truly over and I am a little sad. Not the usual Yuletide hangover, but regret that Christmas wasn’t as magical as I could have made it. We had sickness and birthday parties, beach holidays and projects that all encroached upon the season. Christmas cookies were hurriedly baked on Christmas Eve. The school carols were rained out and we didn’t get a chance to go to another. I didn’t go to a Christmas Eve mass, as I was so very tired and unwell. Hand made Christmas presents went unmade. We didn’t take the train one evening to see the big Christmas tree in town.

I didn’t make Xavier a decoration this year and I didn’t place a Christmas tree beside his grave. His little Christmas area was necessarily condensed due to the reach of a curious toddler. I didn’t get a chance to write Xavier a letter. Out of everything, these things sadden me the most. Sometimes life gets in the way of the best laid plans. And I feel like he was forgotten – not by family and friends, but by me. That he didn’t have the Christmas he deserved. Continue reading →

26Dec2014

What if we reacted differently to the news?

Posted in Uncategorized by Robyna

The news over the past week or so has been bleak. In the season of peace and goodwill to all, we have seen violence and hatred. Two innocent people dead in Sydney, 148 school children and their teachers slain in Peshawar, eight young lives brutally cut short in Cairns. And each mourned, reacted to and reported upon so very differently.

Not long after Xavier died, there was a news story about a lost life. I can’t remember the details anymore but I can vividly remember my feelings. This life lost resulting in a nation mourning. This life weighing somehow more than Xavier’s. This life holding the attention of the entire country. My boy slipping away unnoticed.

We have seen cascades of flowers and tears for the two lives lost in Sydney. The reporting on that terrible siege carried us on its tide. There was no avoiding it. The radio, the television, the internet, the papers full of one story and one story alone. Even if we were miles away, it was happening in our country – it felt personal.

The actions of a lone man felt like an attack on all of our freedoms, our way of life. And the national reaction was a response to that threat. Showing love and beauty in the face of fear. A sea of symbolic flowers drowning the hateful intentions of one person. Two people died. That is a tragedy. A tragedy that is repeated daily on our roads and in our homes and magnified across the world. The outpouring of grief and support over those two lives was connected to a context that seemed to touch us all.

The thought of hundreds of children slain is incomprehensible. But there will be no tsunami of flowers for those young lives. Lives lost in a far away place where peace seems elusive. Where only the most sensational of war crimes make it to our news. The bits of news that make us sad and then very grateful to live in Australia. The bits of news that make terror seem very far away. The bits of news that seldom compel us to act. If two people died in a siege in Pakistan, we would not know about it. It would not even be considered news.

Eight young lives tragically cut short in Cairns. Behind closed doors. A family matter. A terrible, terrible story but also distant. I do not see myself in the face of the mother who appears to have done the unthinkable. I do not see my childrens’ faces mirrored in the school children of Peshawar – a place so far away and so mired in violence.

But I can see myself in the faces of Tori Johnson and Katrina Dawson. A mother. A partner. Middle class. Living and working in a safe city. Nothing to indicate that their lives would end so tragically. And so hearts bleed and petals fall.

But what if I could stretch my empathy and imagination to see myself and my babies in that desperately sad situation in Cairns? What if I could see my childrens’ eyes mirrored in the school children of Peshawar?

What would our world look like if we paid more attention? If we felt more? What would it inspire us to do? And how would it impact the world? What if we showed love in the face of hate more often, rather than apathy and despair? What would our world look like then? If every act of terror, act of hate, act of violence was met with an avalanche of flowers and an intention to make the world a better place.

8Dec2014

Grief and Choices

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

Before I became intimately acquainted with grief, I presumed it followed a linear path. A difficult first period, which would gradually ease until reminders of a loved one lost eventually brought smiles rather than tears. Reaching that point would mean grief was over.

Perhaps some grief does work like that. My grief doesn’t. I don’t know anyone who has lost a child who identifies with that pattern of grief. They do identify with people expecting that pattern of grief from them. They do talk of friends and family urging them to “get over it”. There does seem to be a time period when deep grief is allowed and after that point the hard and dark grief is deemed “unhealthy”. Grief stays with a person, changes them, as uncomfortable as that might be. Exercising “tough love” and demanding they try harder to return the person they once were will not help.

There are those whose grief is complicated, who cannot move on from the darkness, where joy has completely left their lives and they are unable to find a reason to continue. It’s not a position anyone wants to be in. Those in the grip of complicated grief need support and understanding.

Sometimes you make choices about your grief, and sometimes your grief makes choices for you. There have been days when I have quite purposely avoided grief – I have pushed thoughts of Xavier aside and I have taken myself away from support groups. I have needed the rest. There have been other days when I have chosen to stay with my grief. To understand it better and to immerse myself in my son gone too soon. These days are harder but necessary. These are the brave days that help me heal. You have to go through grief – there are no shortcuts. Then there are the days when I don’t get to choose. When grief over takes me and hijacks my chosen path. In the days coming into Xavier’s second birthday, I was paralysed. I couldn’t do simple tasks. And I was so angry about it. So devastated to be back in a place I thought I had long left. I did not choose it – this regression. It was not what I wanted. I was not indulging myself or holding tight to grief. Sometimes grief just takes over.

In the dark and terrifying months after Xavier died I desperately wanted to feel better. If I could have made that choice, I would have. But grief isn’t a choice. Grief is the searing pain that follows when someone you love is ripped away. After time, it becomes a scar. Not deep and angry and weeping as it was at first, but a scar nonetheless. Sometimes the scar flares. It’s not a scar I chose to bear, nor is it a scar that I can control. At times, I can hide it. Sometimes, it is so faint that I can almost believe it has gone away. But it will never truly heal.

Bereaved parents can be protective of their grief, holding fast to it as a tie to their child. And that is completely understandable. I do not think grief is my only tie to Xavier. I do not think that deeper love is expressed through darker grief. Although, I worry that perception is there – that if my grief lightens, others might think the love I have for my son has lessened. Grief and love are linked, but I do not believe that they are an echo of each other. My grief has lessened, whilst my love has intensified. I have no choice over that love. What parent does? The unconditional, completely wondrous, absorbing love that takes a hold of your heart when you become a parent. And just as that love has a life of its own, so does its darker cousin, grief.

If you are struggling with grief, be gentle with yourself. If a loved one is in the grip of grief, be gentle with them. There are times when you simply just cannot choose.

2Dec2014

Lies, Damn Lies and Karma

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

Life was very simple when I was teenager. Things followed a linear path. Whilst I was riddled with teenaged angst, unsure of myself and my place in the world, I was at least sure of cause and effect. If you worked hard, you would achieve your dreams. If you were kind, kindness would be bestowed on you. If you did the right thing and made the right choices, then things would turn out just fine. Good things happened to good people. I believed in karma.

I don’t believe in karma anymore.

As a group, the girls I went to school with have been beset by more tragedy than seems fair. They are not my stories to tell, so I will not list the challenges and tragedies here, but there have been enormous losses sustained amongst a concentrated group.

When I think back to the fresh faces of my senior year, I wonder what we would have thought had we known the future. In what now seems like cruel irony, we had nicknamed ourselves “immortalised”. Time has taught us we are neither immortal nor immune.

When we first lost Xavier, I was sure I was being punished for something. I searched my heart and my soul for answers. What had I done to deserve this? And when my friends experienced their own personal hells, my first thought was “they don’t deserve this”. Despite life continually teaching us differently, it is hard not to assume cause and effect. That tragedy would somehow be fairer if it was only dealt to those who lived carelessly. That some cosmic system of checks and balances exists. It doesn’t. Sometimes terrible things happen to good people. Sometimes terrible things happen to people who appear to have had their fair share of tragedy. As you get older, it seems the terrible things mount up.

It is an eternal question – why bad things happen to good people? The theoretical and theological answers to that question are cold comfort when you are the person. When that question is not asked in some esoteric context, but wailed, pleading for answers. It is hard to accept that bad things happen so that others can be grateful for their blessings, or to give us an opportunity to lean on God, or because the world is imperfect. It easier to believe in chaos when you are in the midst of it. That there is no sense, no rhyme and no reason. That fate is random and cruel. When we lost Xavier, the inelegant words “it’s so unfair and it sucks” brought so much more comfort than pretty stories about God working in mysterious ways and things happening for a reason. Life does not owe any of us fairness. And quite often, she does not grant it.

We live in our world that believes in justice and blame. That seeks to attribute a terrible occurrence to someone’s misdeeds and punish them for it. But when there is no one to blame, what can you do? Shake your fist at God? Invite blame into places it does not belong? When we lost Xavier and they told us there were no answers, I blamed myself. There was no-one and nothing left to blame. But some-one had to be responsible and I took up the mantle. Like so many before me, laying under blankets of guilt. We are so sure of this karmic circle – that one thing leads to another that it is difficult to accept there is no link. That some terrible things happen without there being anyone to blame.

I don’t believe in karma. But I still believe in kindness. Not because it will be returned, but because it is a better way to live and it makes the hard things easier to bear. I still believe in hard work. Not because it will necessarily be rewarded, but because it is satisfying in and of itself. I still believe that there is good in the world – but it is not bestowed on the good people all of the time. The most we can do is hold fast to the love that surrounds us and give it away freely. In the midst of tragedy, it is kindness that offers some sweet relief and it is often tragedy that opens the flood gates to love. Karma may not exist, but kindness abounds.

23Oct2014

Poetry in Grief Thursday – The Broken People

Posted in Grief over child loss, Poetry by Robyna

Every Thursday I am sharing a poem I have written for Xavier.

Today I wanted to share a poem that was published in the beautiful book Three Minus One.

I was thrilled and humbled to be a part of this collection of stories, essays and poems about the loss of a child. You can buy the book here.

This poem is about the change that occurs when you lose a child. The person you become. The fragility and the strength that co-exist.

The Broken People

I am one of the broken people

The people who are hollow

The people made of glass

The people made of sorrow

You might not know it

Think me the same as you

But look a little closer

You’ll see straight through

I am weightless, groundless

I am battered, I am broken

I am bruised, I am tired

I am words left unspoken

I am acting when I’m smiling

I am pretending even now

Appearing to be living

When I have forgotten how

I go through the motions

I wake up every day

Do the things that need doing

Say what I am supposed to say

But this vessel is broken, empty

It is cracked beyond repair

And sometimes when you see me

I have vanished into air

I am living on the outer

Each breath hangs by a thread

I am half way between the living

I am half way to the dead

One day I’ll find my feet

Feel the earth and remain

But even when I make it there

I’ll never be the same

Because now I am so fragile

Heart shattered on the floor

And ‘though I am made of glass now

I am somehow stronger than before

14Oct2014

1 in 4 – Why it Doesn’t Compute

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

This month is infant and pregnancy loss awareness month.

Every October I see this:

I am going to be completely honest. It doesn’t sit right with me. I lost my baby to SIDS. That was a 1 in a 1,000 chance.

Yes, I am a part of the 1 in 4 statistics but it is a very, very thin slice of the graph Xavier falls into. His death was not common (Thank God). What we went through does not happen to a quarter of the Australian population.

And so I don’t feel comfortable announcing I am 1 in 4. I know the aim of the campaign is to start people talking about the taboo subjects of miscarriage, stillbirth and infant loss. I know it’s about solidarity. I know there are no ladders in loss. I know that every one of the children remembered this month, and every month, is precious and loved – no matter their age or development. I know all of this and I support it, but I recoil when Xavier’s death is placed on the same shelf as miscarriage. I feel like a traitor even writing that. Within this community of loss we support each other equally and fully. I feel privileged to know women as mothers when their motherhood often goes unacknowledged. It is a gift to know their children through their love. I know they have their own struggles.

And so do I. And they are different. As much as I acknowledge that there is no comparison in grief, no more than, no less than there is also no the same as.

The loss of my son to SIDS is not the same as a miscarriage. It is not the same as losing a child to stillbirth. It is not the same as losing an infant to accident or illness. It is different. And that needs to be acknowledged. Each of those losses is unique and has its own pain. Not more than. Not less than. But apart.

That uniqueness feels lost when I become 1 in 4.

It was only a week or two after Xavier died. My very good friend, who has had more than her fair share of miscarriage heartache, and I were talking. I was trying to put Xaviers death into perspective. I said “perhaps there is no difference, perhaps his death is like a miscarriage”. I was struggling with my loss and honoring her loss now that I had a different perspective and understanding. She gently put her hand on my mine. She looked me in the eye and said “it’s very different.” That was a gift. The understanding that this pain held a different weight, that it was a different shape.

It is an understanding that doesn’t always occur within the loss community. Every one holds tightly to the recognition of their motherhood. I understand why. It is often the only place that motherhood is recognised. There is a fear that acknowledging the differences in loss would lead to a reduction in the recognition of motherhood. But we are all different. We mother differently. Our losses occurred differently. Our journeys take different paths. We share so much in common, and we hold that up. But I think it has to be okay to talk about the differences too.

This pregnancy and awareness month, I am 1 in 4.

I am 1 in 1,000.

And I am the only mother to my son.

2Oct2014

Poetry in Grief – his Grave

Posted in Grief over child loss, Poetry by Robyna

I used to visit Xavier’s grave weekly. I don’t go so often anymore, but it’s still a part of my life. It always seems so strange to stand there, knowing that a part of my son resides in this saddest of gardens. I wrote this a week or so after Xavier had been buried.

Your Grave

There is a place I go to,
Even though it makes me cry.
There is a place I go to,
Though it makes me wonder why.

Why so many little lives,
Were tragically cut short.
There is a little garden,
Which holds more children than it ought.

My little son is amongst them,
Amongst the graves and flowers,
Amongst butterflies and windmills,
Amongst sad and silent hours.

He has a little grave,
Where the mound is still high.
He’s next to another boy,
Who shouldn’t have had to die.

I wonder if he watches me,
Crying over his tiny grave.
I wonder if he whispers,
“oh mummy, please be brave”

I wonder if he plays with,
The other children who are here.
Is he now best friends,
With the baby who is near?

I will never meet his little mates,
Never know who’s his favourite one.
But I like to think of them,
together, playing in the sun.

I hope that he is happy,
That he’s surround by love and light.
I hope he know his mummy,
Keeps his memory bright.

So I’ll keep on coming,
And every time I’ll shed a tear.
You are so very far away,
But it’s the place you feel most near.

25Sep2014

Poetry in Grief – How to be a Mother?

Posted in Grief over child loss, Poetry by Robyna

After losing Xavier, I knew that I would need to figure out how to mother him still. But it seemed an impossible task. I had lost confidence in myself as a mother and the things I prided myself on. I wrote this poem, trying to articulate and search for my new kind of motherhood.

Mummy

I know how to be a mother
to a child of flesh and bone.
But how to be a mother
when his world is not my own?

I know how to change a nappy,
I know how to give a feed,
but how can I be your mother
when I don’t know your every need?

I know how to give comfort,
I know how to dry tears,
but how can I make it better
when I never learned your fears?

I know how to play peek-a-boo
and I can do it for quite a while.
But how can I make you laugh
when I never saw your smile?

I know how to plan a birthday
what presents please a son
But how can I give you a party
When your birth day was your only one?

How can I be your mummy?
What’s the best thing I can do?
For I am still your mummy
And I love and cherish you

I will light a candle to remember
I will leave butterflies at your grave
I will talk about you often
Honour you and be brave

One day we might meet again,
I’d tickle your little tummy,
you’d laugh and squeal with delight
and I’d hear you call me “Mummy.”