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

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.

 

 

 

Dearest, I hope you don’t mind

Dearest Xavier,
It’s been a while since we talked. I am sorry. I have to wonder if you mind. I have to hope you don’t feel forgotten.

In the early days after you said goodbye, my every thought was full of you. My arms were empty but my mind overflowed with you. The hole in my heart was exactly your shape. Yawning and bleeding and wide. And I spoke to you and I spoke of you. You were never far from my mind or my lips. But time has become the healer they promised, even when I didn’t want to believe. And you have settled into a different place.

When the hair dresser asked how many children, I didn’t speak of you. But I saw you as I drove home against the bubble-gum pink sunset.
When the lady at swimming asked about my boys, I didn’t say your name. But she pressed and asked about the age gap and I told her that you lived. And that you died. And she wondered how you ever recover from such a thing. I held your little brother a little closer and said he helped immensely. Because what else could I say? I hope you don’t feel betrayed.

In the earliest of days I did things for you constantly because I was convinced that I needed to mother you and more than that, you needed me to mother you. As I move away from my need does your need lessen as well?

Oh my little man, please know you are still loved. As this river called time seems to pull me further away, know my heart is still tied to yours. And although my thoughts are no longer tied in knots around your memory, your memory is secure and safe. My dearest Xavier, as I heal, I hope you don’t mind.

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".

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

Lucky

DSC07109Last 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.

Poetry in Grief

20140815-213914.jpg
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”.

Work, Identity and Motherhood

It happens when your child turns a year old.  Mothers group friends start to spend more time in paid work and less  time at coffee gatherings.  People start to ask whether you are returning to work soon.  Others start to presume that you have decided to forgo your career.  And suddenly impermanent maternity leaves feels a whole lot more permanent that you had intended it to.

My career has always been important to me.  One of my anchors.  It has been a part of me, integral to my identity. The way I want to see myself and the way I would like others to view me.

A year after Isaac was born, I was back to work.  It was busy and stressful.  Our family committed itself to the hamster wheel of waking, child-care, working, sleeping.  My work was interesting and fulfilling but the lifestyle did not feel sustainable.  In fact, I kept waiting for the balls I was juggling to drop.  Invariably, the one that did related to my own self-care.  For the first time in my life I felt that what I was sacrificing for my career was too much.  Not only was it too much, no-one seemed to be acknowledging the sacrifice.  After asking myself some hard questions, I stepped down from a senior position and negotiated a two day a week role that did not involve managing people.  Did I go backwards in my career?  No doubt.  Was it the right decision for my family? Yes.  Was I incredibly lucky to work for a company that values family life, its employees and was open to this idea? A resounding and grateful yes.

It was while working within this role that I said hello and goodbye to Xavier.  I returned to work a few months later. That return was not spurred by a desire to advance my career.  There were a myriad of other reasons.  I was grasping for anything that made sense and gave me structure.  My world had blown apart, and I was picking up the tattered pieces, trying to put them together again.  But they did not easily slot back into the places they once did.  Priorities had shifted.  Perspective had changed.  Work gave me a place to go.  Things to do.  A place where my frayed self-confidence could repair itself.  But I did not think of work in the context of purpose or identity.   My life was on auto-pilot and I was in survival mode.

As Elijah turned one and I did not return to work, I felt a loss of identity.  I am due to return in January, giving me another six months with my precious boy.   I have started to take the reins of my life again.  I am no longer in auto-pilot mode but those priorities have still shifted. Yet, the prospect of not going back to work has left me at sea without an anchor I once relied on.  I think that anchor is probably more about purpose than career.  And I have yet to figure out what that purpose is.  Whilst I am sure that my career will still be a large part of it, I need to understand it within the context of a different perspective.

Contentment CompassOne of the things that I do love about my workplace is their dedication to personal development.  It is not some thing we often do outside of the structure of work or education.  But I knew I had to get down on paper what was scrambled in my head.  To that end, I created a series of steps to assess my life as it is, centred around the things that are most important to me.  I have decided to share those worksheets in the hopes that they may help others who are feeling a little lost within their own lives.

If you do decide to use these worksheets, give yourself some time and space to focus just on yourself.  I hope that you find them useful.

Step 1 – Contement Compass

Step 2 – Time and Importance Mind Map

Step 3 – what is important to me

Step 4 – Goals and Achieving Them

 

 

The Grief Words

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.

Last Night’s Reality

There is a movement around Facebook and blogs at the moment to document the less-than-pretty sides of life. The idea is to counter-act the “highlight reel” mentality of social media where you compare your real life to the things everyone else has carefully curated and find it cruelly wanting. I am the first to admit that my Facebook feed tends to be full of gorgeous pictures of my kids doing gorgeous things. I don’t apologise for that as my primary use of Facebook is to share those photos with family and friends that I don’t often see. But blogs are places to be real and whilst I always reveal my heart, I don’t often write about the minutiae of every day life – whether it be positive or negative. So, in the interest of honesty and solidatory , here is an account of last night:

Our littlest man is not sleeping well. Twelve month old separation anxiety coupled with teething and the edge of a cold have conspired together. And in a story echoed in bedrooms across the world, we are too tired to do all the “right” things and instead do the thing that gets us the maximum amount of minimal sleep. Yes, Elijah has moved into our bed. I hate this, I feel guilty about this, I feel terrified about this. I also want to sleep.

8:30PM
Knowing that the night ahead is unlikely to yield much sleep, I go to bed. I leave Elijah sleeping peacefully on N as he watches sport for a few hours. This wonderfully self-less act is called “looking after the baby so mummy can get some rest.”

10:30PM
N comes to bed with a crying baby. It cannot be time already can it? Quietly resign myself to the fact the best minutes of sleep for the night are far behind me now. Settle baby. Consider transferring him to his cot. Know that this will result in him waking. Shift him to carefully be between us, away from any pillows and hold breath hoping none of that will wake him. Watch him breathe peacefully. Settle into sleep.

11:00PM
Elijah awake. Soothe with pats and songs. Still crying. Does he have a temperature? He must have a temperature? Must be teething. Has to be something. Do I give him Panadol? Am I really just trying to drug him into sleeping?

12:00AM
Finally have settled him (Panadol was involved). Cannot go back to sleep. Need some water. Creep out of bed to get some water.

12:15AM
Starting to drift off to sleep. N starts to snore. Poke him and implore him to get onto his side. Muffled noises. Compliance.

12:30AM
Need to pee. Why did I drink that water?

1:00AM
Elijah crying. Elijah darling, go to sleep. Please, please, please go to sleep.

2:00AM
Elijah crying. Darling, darling, I thought we were friends? Help me out. Tomorrow I check into a hotel overnight. I swear I will do it.

4:00AM
Elijah crying. Blearily look at clock. 4:00AM? Did I really just get two hours sleep? Two hours sleep!

4:30AM
Elijah crying. Little boy, if I buy you a pony will you let me sleep?

4:45AM
Elijah crying. Wonder if I am unwittingly part of sleep deprivation experiment. Expect David Attenborough type to step out from the curtains “now, watch what happens when the female adult is denied sleep …”

5:15AM
Elijah asleep. Car drives past and I hear the bass before the engine. Who has their radio up at five in the morning? You wake my baby, I WILL hunt you down.

6:00AM
Radio talk show hosts enter our room. The alarm. Elijah still asleep. Thank Goodness. Can I make lunches whilst he still sleeps? Really should. Okay, will get up when the weather is on. Weather is on. WIll get up when the news is on. News is on. Will get up with the traffic report is on. Traffic report is on.

N wakes. “I didn’t sleep that well” he says.

Being Okay with Being Okay

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.

Prayer Flag Tutorials for the Day of Hope

On the 19th August each year, we mark a day of hope.   A day to reflect and honour our much loved babies.  In the lead up to the day, Carly Marie hosts a prayer flag project.  Parents and others touched by the loss of a child are invited to make prayer flags in honour of their child or children.   The project had it’s birth not long after Xavier’s death.  I remember so clearly sitting down and making him a flag, tears streaming, but grateful for something to do.  For the first time, I found something healing to do with my empty hands. I could not stop  making them.  They hang on our verandah, joined by the flag I made last year and the one I have just made.  As Xavier’s birthday is at the beginning of the project, each year I will make  a flag for him, for hope and for healing.  I am drawn to lace and fragility when I create for him. The flags reflect that.  The ones I first made are a little battered and bruised – they are starting to fray.  But I find them even more beautiful this way.  I think it’s an apt metaphor for life after loss.

DSC06160Xaviers Flag by Carly Marie DudleyPrayer Flags

I have a sewing machine and inclination to sew. But you do not need either to make a beautiful flag.

Here are flags you might look to for inspiration.

The Paper Bag Flag 
I wanted to make a flag with objects I had around the house.  As this remains a bag, I have placed all of Xavier’s 2nd birthday cards within it.  If you choose to make this flag, you might like to write a letter to your child and place it within the bag.

Prayer Flag

The Printed Flag
Did you know that you can directly print onto fabric using freezer paper if you have an inkjet photo1-2printer?  Neither did I.  This flag might suit those that prefer to design on-screen than on-fabric.  If you feel uncomfortable printing like this, you could also use transfer paper and iron onto your flag.

 

You Need

  • An A4 sheet of paper
  • A piece of cotton fabric the same size as an A4 sheet of paper
  • Freezer Paper (you can buy this from Spotlight for about $1.50 a meter, they have it behind the counter)
  • A computer
  • An iron
  • An inkjet printer
  • Sewing machine (optional)

To Create

  • Create a design on your computer that you are happy with.  It might include a photo, a verse or a beautiful picture.  I chose to include Xavier’s footprint and a quote that speaks to me.  Keep in mind the final flag will be 9inches (width) x 12inches (height) when creating your design.
  • Using the A4 sheet of paper as a template, cut the freezer paper and the fabric.  They should be the same size.  
  • Iron the freezer paper onto the fabric.    This article gives more detailed instructions – please follow them – I would hate for anyone to damage their printer!
  • Print onto the fused together freezer paper and fabric, ensuring that your print will be on the fabric side.
  • Peel off the freezer paper.
  • Trim or hem your fabric to size 9inches (width) x 12inches (height).  If sewing, fold the top over with enough room to thread through a ribbon to hang your flag.  If trimming, you might like to hang your flag with pegs.
  • I chose to sew a heart around the image.  It would also be sweet to add beads or other objects precious to you and your baby.

feet

I dearly hope your creative process brings you healing, hope and mostly, a sense of connection with your baby.