Today

 

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Xavier’s birthday prayer flag

Of all the days, he chose today.  Today to wake in his own bed. It’s something to be celebrated. Something we’ve been encouraging. But this morning, of all mornings, I wanted him beside me. To breathe in his still faintly baby smell and to have his pudgy little hands grasp my cheeks.

His older brother didn’t come in either.  Deeply asleep in his room. There was no bounce to greet the day. If their middle brother had lived, there would be bounce. There would be presents and laughter and wrapping paper strewn every which way.

Instead, I go into the boys rooms. Hand softly on hearts. Checking that they are still breathing. Because today, of all days, I don’t presume a thing.

I have a shower and my thoughts unravel for the day. The cleaners are coming and my white, middle class guilt about that kicks in. Today I won’t tidy. Today they will have to manage around discarded train tracks. I think about the cost and then the cost of daycare that ostensibly allows me to work.  And whether any of it is worth it. I stop short of calculating my hourly wage. Fallen so far from corporate high flying. It’s dangerous territory when I’m feeling useless. When my thoughts are skating around the inevitable. I haven’t bought him a present yet. What sort of mother leaves it until her son’s birthday to buy a present? I try to tell myself to stop but my heart isn’t in it. There is a strong part of me that welcomes self destruction. Today, of all days.

I choose my clothes carefully. Which would seem odd to most people. But clothes have always been armour. I wear jewellery laden with meaning.  A necklace with his initial and foot print.  A butterfly brooch. I look in the mirror and I am old.  Tired and sallow.

My phone sits on the counter and I reach for it out of habit.  Today the tide of routine is what will keep me going.  There are so many messages. So many people remembering him. Tears fall. Not drought breaking but enough to give some relief. This day that has all the grief rolled onto it. So far from my everyday reality. There are only a handful of days I let myself cry. Birthday, Anniversary, Mother’s Day. I let the grief build and build and build and then the calendar demands its release. Today of all days.

This day. His birthday. Four years old and forever newborn.

Seasons in Grief

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There are seasons in grief.

The first Winter – desolate and cruel. Seemingly unending. Life is frozen in the moment you said good-bye. Everything is grey, turned to ash. Food has no taste. Blooms no scent. There is a hollowness that echoes through every moment. The weight of a missing baby heavy against you. Absence, weighing more than presence. Crippling. It is impossible to concentrate, to still your mind long enough. There are words, and they fall, softly as snow, around you. You know they mean well but the words don’t bring summer back. And the void the baby who left made is so vast that you could fall into it at any moment.

Then, gradually, the Spring. Hope shooting like new grass. The colour starts to return to a faded world. You hear an unfamiliar sound and realise it’s your own laughter. You hold a newborn baby and instead of it ripping you apart, you think about a promise for your future. Life beckons and, with hesitation, you respond. You wonder if it’s okay – to let this in. Whether you are betraying your baby by smiling again. And then you catch glimpses of him – when the light hits a certain way, when a butterfly floats near, an unexpected tiny white feather settling on your hand. If you listen very carefully you can hear him. And he wants you to be happy. You open the window and you let hope in.

Against all odds, Summer enters your life. There is joy again. There is sunshine and there is life. There is beauty and purpose. There are so many things you once never thought possible. And against this brilliant blue sky, the knowledge that you lost a baby feels uncomfortable. How could you have lost someone so precious and be happy? How is it possible that a life full of love and laughter can also accommodate such enormous loss? You once thought that you could never be happy again – that life could be bearable at best. Yet, here you are, filled with contentment. The photos that once could only illicit tears now bring a melancholy smile and there is gratitude for being part of a precious life, no matter how short. You have come to some sort of peace. Not an acceptance, or even an understanding, but a life that can accommodate loss and still be beautiful. You feel him in that sunshine and it warms your heart.

Autumn falls. Little reminders. The tug of winter. Things that were once easy, become less so. An anniversary approaches, a birthday, Christmas, Mothers Day, Fathers Day. Days that remind you of the great hole in your life. Or perhaps it is a word, a memory, a song that cuts at the wound not quite healed. A chill enters. You try to shut the door, to close it out, but winter is insistent and sometimes grief has its own agenda.

And then Winter can come again. Never as long or as cruel as the first, but the sadness creeps back.

But no season lasts forever and love lasts through them all.

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.

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.

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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.

 

 

 

PresentsImage
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.

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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.

The New Year

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.

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When the hurting eases

There have been times in my grief that I have been jealous of the way others are grieving.  People who could forget for that split second before they fully woke that their lives had been shattered.  That little tiny window of innocent bliss.  That has never been my experience.  I would wake, every morning, fully aware of Xavier’s absence.  My dreams bereft of his presence.  There was no sharp blow each morning, there was a dull and continuing ache.   And then one morning I awoke, maybe two or three months after his death, and I felt nothing.   I probed at memories, like a child wiggling a tooth, coaxing the tears and the emotion back.  Nothing.  Not even an emptiness.  Just a complete absence of emotion.  I was perplexed.  Was this it?  Was I “over” my grief?  Was I “better”?   It was not until a few weeks later, after the tide of grief had pulled me back in, that I realised this was my mind giving my heart a rest.  Grief is incredibly exhausting, hard, tiring work.  It leaves little energy for other things and eventually, my body claimed the rest it so craved.  At the time, I couldn’t conceive how my intense grief had simply disappeared.  And it made me uncomfortable.  The tie to my son severed.  Yet another thing taken from me – another silent thief in the night. I found myself jealous of those who were clearly in the dark depths of pain.  I knew how bitterly that hurt, but at least it kept my son close.   I was not okay with this version of okay.

Now, I find myself in an entirely different phase of my relationship with Xavier.  And, surprisingly, it is okay.  It’s never going to be what I want it to be – but that goes without saying.  But, I can genuinely smile and laugh, without guilt.  Increasingly, I feel Xavier in the love and laughter of my family.  He has become one with that love – woven tightly into its fabric.   Christmas Day, my husband and I visited Xavier’s grave.  I waited for the inevitable rush of emotion.  Being thrown back to the day we buried him.  Wanting to hurl myself into the earth to be with my son.  That emotion didn’t come.  And as I stood, tinsel around tiny graves glistening in the sunshine, relentless heat searing the little christmas trees, I realised, Xavier was no longer there.   Xavier was back with my family.  He was around the Christmas tree.  He was the joy in the season. He was the hope in shiny, little eyes.  He was the promise in chubby little hands tearing at wrapping paper.

Is this healing?  Is this the resolution of grief?  Can I close a chapter or wrap everything up with a big, shiny bow?  I think it is healing – I think it is a changing relationship with my son and I think that’s a positive thing.  But I worry – how is that perceived?  Do people think I am okay with the fact my son died?  Do people think that I am stoic and brave?  I am okay.  But I am not sure if I am okay with being okay.  I am not okay with how being okay might be perceived.

We wade through grief, waiting desperately for the day when peace will be restored to our hearts.  But are we ever prepared to give up what might lead to that peace?

Little Xavier, as I think of you this Christmas season, I feel your comfort around our family.  I try not to think of you, eighteen months old, tumbling around the Christmas tree.  For that is not you.  That memory belongs to someone else’s child and motherhood.  To think of you that way is to invite pain.  Instead, I catch glimpses of you in the twinkling lights, in the shining eyes of your brothers, in the embraces of family and friends and the very essence of Christmas that I once thought was lost forever.  Merry Christmas little one.

Good Mother

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There is a terrific rant currently going viral around Australian social media networks celebrating all kinds of different mothers and encouraging us to stop judging others and ourselves.  Em Rusciano reminds that we are all good mothers – even if our parenting styles look different.  You can read the article here.

It made me think about the judgements we place on ourselves as bereaved mothers.  In general, the child loss community is fantastically supportive and kind.  It would be a very small minority that would judge the way another is grieving.  However, I think we often judge our own grief and the way we mother our angels.  I look at those that honour their angels through setting up projects, raising incredible amounts for their chosen charity or those that have set up their own charities and wonder if my way of mothering Xavier is adequate.   Should I be doing more for my little boy?   When my tears don’t flow as freely, and I am having several good days in a row, I wonder, “Should I not be hurting more for my precious baby?”    Yet, I have had people mention to me that they look at the creative things I do for Xavier and they wonder if they are doing enough in that space for their angel.  Others long to get to a gentler place in the grief.

Figuring out how to the best mother you can be is difficult.  Figuring out how to be the best mother to a child no longer in your arms is even more so.  We look at those around us for inspiration and sometimes come away feeling inadequate.  We put enormous strain on our already strained selves to do beautiful and wondrous things for our children.  When really, breathing each day, getting up, or deciding to just stay in bed is wondrous when you have lost a piece of your heart.  So, taking inspiration from Em’s new rules for motherhood, I wrote a set that apply to the bereaved mother.

1. Do you raise money, create, write, dream or paint in your child’s memory? – Good Mother

2. Are your tears the greatest testament to your love? – Good Mother

3. Do you get up and face the day even with your broken heart? – Good Mother

4. Do you stay in bed and cry for your lost love? – Good Mother

5. Do you embrace the things you have learned in your grief and find  peace? – Good Mother

6. Do you rage each day at the unfairness of a universe that stole your child? – Good Mother

7.  Do you love, grieve and miss them each and every day, no matter when they last were in your arms and make no apologies for doing so? – Good Mother

The hearts that surround us – educating those that support the bereaved

Within the support groups I am a part of, whether in person or online, a common topic of discussion is insensitive  comments and actions made by loved ones.  It seems every bereaved parent has at least one story (most many, many, many more) about being deeply hurt by the words, actions or inactions of someone they hold dear.

But just as there is no definitive guide book on how to handle your own grief, there is no ‘Support 101’ for friends and family to rely on.  The unfortunate fact is that it often falls to the grieving to instruct those around them on what they need.  An almost impossible task, particularly in the earlier days when  you don’t know what you need, aside from the one thing no one can give – your baby back.

Whilst it seems momentously unfair,  it is often a choice between losing friendships or being open and honest about the support needed.  Personally, I could not fathom further losses.   But I know for others, certain friendships had to be let go.

So how do you educate those around you?

  1. As callous as it sounds, work out who is worth the effort.  For me, it was all of my friends but if you have one of those people in your life who only ever take, it might be time to let them go. You have nothing left to give.
  2. Consider telling people about the positive things that remind you of your child.  Through telling people about seeing Xavier in the sunshine, they often refer to “Xavier’s sunshine” and will send me pictures of beautiful sunsets and sunrises.  It’s a way to share him and have people remember him that feels joyous.   It makes people feel comfortable about sharing in his memory and helps them realise that as much as his death makes me sad, his life makes me happy.
  3. Have a forgiving heart. People are going to say hurtful things they don’t even realise are hurtful.  Try to see the intention rather than focussing on the content.  If the intention seems pure – explain to them why what they said or did caused you pain.  Do it sooner rather than later.  There is no point in holding onto hurt and leaving your friend completely unaware of the pain they unintentionally inflicted.  If you think the intention was hurtful, see point 1.
  4. Share articles and blogs that resonate with you with your support network.  Not only are you educating your friends and family, you often feel validated – a sense of – “see, other people who have lost a child feel exactly the same”.  It helps the non-bereaved to understand that what we imagine “healthy” grief to look like and what the reality is are often very different.
  5. Realise that the person who has stayed silent may have nearly rung a dozen times, had a half-written email filled with good intentions, verged on texting and then second-guessed themselves and thought their words would bring more pain than relief.  It’s not an excuse – if that person is dear to you they need to know that silence is often the most painful of reactions.   But don’t assume their silence immediately means they don’t care or aren’t thinking of you.  The opposite is the most likely scenario.
  6. If it’s your baby’s birthday or anniversary and you want people to remember with you, let them know that in advance. For Xavier’s anniversary, I had ribbons made with his name on them and asked people to wear them. Others have asked loved ones to reflect on how their child has touched them.    If you’d rather be left alone, let people  know that too.  But please don’t get to the end of the day and feel wretched that nobody remembered your baby. Some people may have forgotten, others may have remembered and been unsure what to do and so opted for silence as the safest bet, particularly if you haven’t mentioned the day in a public way.  With the exception of close family,  I don’t expect others to have Xavier’s dates engraved on their heart as I do.
  7. Lead by example.  People are so scared of doing the wrong thing – they will look to you as an example of how you want your baby remembered.  If you talk often about your child, they will hopefully also feel comfortable to do so.   Let them know you like talking about your baby (if you do).
  8. As a bereaved parent, you sometimes ended up supporting others through their grief over your child. This isn’t okay.   This is pretty much the best advice I have ever read relating to support –  Ring Theory.   Share it.
  9. If the thought of explaining how you want to be supported to all your friends and family seems overwhelmingly daunting, enlist the help of your dearest and closest friend or family member.  Get them to help you educate those around you. This also works well when returning to the workforce.  Having a trusted colleague talk to your team mates on your behalf can help avoid awkward conversations.   If you still feel quite lost and unsupported, you can ask friends and family to talk to SIDS and kids. Their counselling service extends to all of those touched by child loss. A dear friend often rang SIDS and kids in the early days as she wanted to learn ways to support me as best she could. I am so grateful for that.
  10. Unless a person has lost a child, they will never fully appreciate the depth and breadth of your grief. That’s okay – we want as few people as possible in this “club”.  However, it’s  important to connect with people who do know that pain and can offer a different kind of support.  Whether online or in person, child loss support groups are incredibly important and will relieve some of the pressure on you and your friends and family.

There is nothing fair about losing a child.  It’s not fair that this burden of education falls on the people who already have such a heavy load.  But the reality is, it does and the way we carry that load has a significant impact on how well supported we will be during this journey.  By assuming people know what to do, or seething without saying anything when they try and fail, we break our fractured selves just a little bit more.   The best advice I received when we said good-bye to Xavier was to “go gently”.  Go gently on our own hearts, and the hearts that surround us.  Go gently.

Welcome to the world little rainbows

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All over the world, new parents are gazing with untold love, adoration and awe at their newborn children.   Of these, a small percentage are filled with just a little more wonder, just a touch more disbelief, slightly more  gratitude that their sweet little baby has arrived and done so safely.   They are the ones who do not sleep, but watch over each breath.  The ones who marvel at the sound of little cries, not quite believing they are real.   The ones that have to pinch themselves that so much joy has finally come into their lives.   When a midwife assures them that babies are less fragile than they look, they are the ones that regard that advice with suspicion.  Experience has taught them differently.

They are not first time parents but the baby they held first was without breath.  And at painful times, without  recognition. Midwives, doctors and friends might refer to them as first time parents, as new mums and dads.  Not necessarily because they are ignoring the baby who came before – the baby that didn’t take a breath or only snatched the smallest amount of life. But because our language has no word for a parent that loses a child, let alone to describe a parent who has lost a child and then welcomed a living baby into the world.    These mothers and fathers have had to parent in the hardest of situations.  They have had to find ways to love and connect with a child that they cannot see.   They have had to nurse aching, empty arms.  They have had to find strength they never knew possible.  They have had to fight for their motherhood, for their fatherhood.  They have kept memories alive.  Their hearts have been broken and yet swelled to accommodate the most amazing of loves.

And now these parents face a new and alien set of challenges.  How to bathe this little one.  How often to feed. How to soothe cries. How to tell if he’s too hot, is she’s too cold.  But there are other things they already know.   That the love for your child is all consuming.  That you love them a little more dearly each day.  That being a mother or father is such an awesome and beautiful responsibility.   They know the full precious weight of their baby. They know every breath is a treasure.  And they know that this little one has a big brother or sister, looking over them. Keeping them safe.  They know that their family looks a little different from others, but their first child or children will always have a place within it.  They have loved and loved and  loved.    And now they get to love a baby that demonstrably loves them back.

With much love to all the parents who have recently welcomed rainbow* babies into their families, but particularly those who are welcoming a child after losing their first.

*A rainbow baby is the term used by the loss community to describe a child conceived after loss. It refers to the hopeful rainbow that appears after a storm.  The storm does not refer to the child that did not live. But rather the very dark place that inevitably follows after loss. Nor does a rainbow signify the end of grief.  A rainbow baby brings hope and light into a shattered family, whilst they still miss and grieve for the child they hold in their hearts rather than their arms.  

The spaces that define you

“Is he your first?”  “How many children do you have?”  “Does he have any brothers or sisters?”.  Innocuous questions.   Until you are grieving mother.  Then they become the questions you dread.  The questions that can leave you gasping, even when you have a well rehearsed answer.

“He is my third son,”  I answer with confidence and hope and pray no more questions follow.  But of course they do.  Because the natural thing to ask is how old.  To comment on  the chaos three little boys would inevitably bring.  And then I have to share Xavier’s story.   And suddenly a superficial exchange has been thrown somewhere entirely different.  Somewhere uncomfortable.  They make apologies.  I make apologies.   I have shifted in their eyes.  I have exposed a tender wound.  I have become to object of pity.

Before losing Xavier and learning a great deal about myself,  I used to think I had come to a place in my life where I was no longer jealous.  In my early twenties, as I watched friend after friend get engaged, jealousy consumed me in an entirely unhealthy way.  I believed that by the time I was thirty, I had let that go.  I watched dear friends build the houses of their dreams and I was so happy for them and surprised at my own lack of envy.  After Xavier’s death I learned some things about who I truly was.   I was not jealous, until they had something that I truly wanted and didn’t have – two living sons.  I did not tend towards jealousy, but I didn’t mind one bit if people were jealous of me.  In fact, I believe I courted it.   And to be object of the flip-side of that – to have people pity me.  To have people think “Thank God that wasn’t me”, was foreign and uncomfortable.   I am still not comfortable with it. And, at least in my mind, it is a natural reaction to Xavier’s story.

When someone learns for the first time that we lost a son to SIDS, I am thrown right back to the beginning again.  As they absorb what I have said, I watch their face change.  They have not accompanied me in the past year’s journey.  They don’t know where I am in this grief.   It has hit them anew, and I am taken back there with them.

I am proud to be Xavier’s mother.   I always will be.   I am happy to be defined as his mother.  I sometimes struggle to be defined as his grieving mother.    It feels like a terrible betrayal, but I am yearning for spaces in my life where I am not recognised as a grieving mother.  Spaces where I can pretend, even for a short while, that I am just as everyone else is.   People ask me how many children, and I find I am now being more evasive – “I have a four year old at home”.

But this presents me with a challenge.  Am I betraying a greater truth by not always proudly owning the mourning mamma persona?  Do I add to the taboo around talking about child loss?  Am I blindly perpetuating the myth that we are all happy, shiny people?  So often when I do open up about Xavier, people tell me something they are struggling with.  That window of opportunity would not exist without my first revealing my greatest hurt.

What is my responsibility to Xavier?  To the community of grieving hearts?  To the wider community? To my own soul and what I need?  How much do I always need to reveal?   I am still working through these questions.

But this I know – even as mother to living children, I need spaces aside from the mummy persona.  Spaces to create, to think, to be.   Recuperative space where I am nothing more or less than the bare bones version of myself.   And perhaps, this is what I yearn for when I say I need space away from being a grieving mother.