Tag Archives: SIDS

Today

Posted in Grief after time, Grief over child loss, Special Days by

 

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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.

1 in 4 – Why it Doesn’t Compute

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

This month is infant and pregnancy loss awareness month.

Every October I see this:

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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.

 

The days belonging to him

Posted in Grief over child loss by

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.

The Changing Tides of June – grief coming up to the second birthday of my son

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Imagine learning a new language.  Struggling to wrap your mind and tongue around strange combinations of sounds.  Frustrated when you cannot make yourself understood in your adopted language.  Elated when you finally manage to string a sentence together.  And then, almost without realising, you are fluent in this language.  It has become an intrinsic part of you and sometimes you even find yourself forming thoughts in this once foreign tongue.  Then imagine waking one day, finding you can barely remember more than a few words.  Your mind grasps for the sentences that once flowed easily and comes up with …. nothing.  

Lately, this is how grief has felt.  June is here and some days bite with more ferocity that others.   I find myself back in places I thought I had left far behind.  Grief is not a linear journey.  It does not follow neat and logical stages.  It is circular and that is frustrating.   I have worked hard to get to a comfortable place in my grief.  I have tried to integrate Xavier into my life in a positive way.  I have deliberately pulled myself away from wallowing. I have strived to be in the best place I can be.  And here I am, despite all that work, feeling very much like I did after we first said Goodbye.  I have lost my fluency.  
 
The other day, as I was preparing dinner, I had to mentally cheer myself on.  Cut the carrots.  Good.  Now put the water onto boil.  Great – see you can do this.  This was a tactic I have not had to employ since the very early stages of grief.   The need to take things very slowly and deal with every second as it comes and on its own terms.  The need to exert an enormous degree of energy on seemingly simple tasks.  I was reminded of why grief can be so very draining.
 
 
What terrifies and fascinates me is how little control I have over the way my mind works.  It has tucked away these dates like land mines and as the months tred upon June and July, they explode.  They blow me back.   They take me into the darker places.  Where rage simmers and the emotions that I believe I can control threaten to consume me.   I find myself balanced on a knife’s edge.
 
I berate myself for being like this.  I have a beautiful family who need me, no matter what month it happens to be.  Xavier’s death left a hole, but at times it feels like I am the only one who sees it.  My life was changed by his leaving, and my life stayed exactly the same after he left.  In many ways, I feel that I do not have permission to still grieve violently.  That I should put away a portion of Xavier’s birthday to be sad and get on with every thing else.  Seize control and beat grief back into its Pandora’s box.  But grief defies this quaraintine – it does not stay neatly in one aspect of my life.  It bleeds into others.  Grief does not care that I need to make school lunches or attend a birthday party.  It marches stridently across my heart and demands my attention.
 
And I will have to deal with it.  I know enough of grief and her relentless tide that she will not be beaten back.  The waves will gain and gain until they crash.  But even as I do, I know that gentler days and a calmer ocean will come again. As much as grief is a circuitous and messy business, I think I know my way back to gentleness.   I might find myself back in places I had left behind, but the hard work has not, cannot, be for nought.  I have toiled to lay the tracks I need to get myself back.   My hard-won language has not been lost and I have only been temporarily rendered mute.

The Weight of June

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My heart knows the dates are coming.  Before I turn my mind to them, my heart is already aching.   The unbearable weight of June.  Suddenly, I am carrying a heaviness I thought I had banished.   In the very thick of grief, I felt like I was surrounded by a viscose tide.  Everything was an effort.   Every little thing met with resistance.  I pushed through it, hoping that the other side would be easier.  I pushed against the heaviness that weighed against my heart.  And I remember being so very tired from the effort of it all.  

It eventually lifted – that thick fog of grief.  But I can feel it, insidiously and un-beckoned, sliding itself back into my life.   The 24th June will mark two years since Xavier came into this world.  The 7th July, two years since he left it.  

My life is in a happy place right now.  I am blessed and continue to be blessed, but it is not enough to guard against the dates.  The violent grief comes unbidden.   That is the thing about grief – it is not a choice.   You can choose, to a degree, how you deal with it.  But the grief itself – that has a life of its own.   I have come to know it now – I can recognise it and I can feel the pull.  Yet, being forewarned is not enough to banish it.   It is at this juncture that I am faced with a choice – do I try desperately to turn the grief away, to turn my back on the tide, or do I accept it – let it wash over me and hope there is catharsis in doing so?  To be honest, I am fearful of either option.   I am not sure I want to sit with my grief – in all honesty, I want to be done with grief.  But, it seems, grief is not done with me.  

There is confusion and fear in the thick of grief.  I have sought solace and peace in a whirlwind life and when I finally eek out that time, I feel lost and alone without my boys nearby.  I want to push out at those who love me most, and I want to embrace them and never let them go.  I want to un-know what I have learned and I want to make the most of lessons hard-earned.   I want to go back to the innocent girl I was, I want to embrace the better woman I have become.  I want Xavier back in my arms, but not at the expense of his youngest brother.   I want to feel Xavier near and real, but I do not want the hurt that inevitably brings.  I want two years to mean that I can experience his birthday without pain.  I want to still feel close to him, even though it has been two years.

Xavier’s first birthday was peaceful – I was so very sad, but the tension was less.  I was filled with the hope pregnancy brings and I had the time, inclination and inspiration to do beautiful things for him.   This year, it feels like the tide of my life washes me further away from Xavier.  Which wave do I ride?  The grief, dark and insistent, lapping at my feet but with the promise of bringing Xavier nearer?  Or the current of a life that continues to take me further away from a much loved little boy?

When I say his name, When you say his name

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I wonder if most bereaved mothers have been there.  Some-one utters the name of your child gone too soon.  And there is a quick sideways glance, monitoring your reaction.  Breath held.  Will she be okay?    

The mother of a child gone too soon talks about her son.  Furrowed brows.  Concerned looks.  Is she sliding back?

A mother accidentally calls one of her living children the name of the baby who left.  Silence.  Is she delusional?

In the months immediately after Xavier died, I would talk about him all the time.  His name was burned on my heart and never far from my lips.  I would speak of him to ensure he was not forgotten.  I would speak of him because I needed to hear his name out loud.  I would speak of him, between tears, because I needed to articulate my pain and I needed to remind those around me that it still cut deep.   His name remains deeply engraved in my heart, but I speak of him less these days.   And when I do speak of him, it is for different reasons.  His memory and his legacy feels safer now.  I do not speak of him to remind people he lived, or that his death caused me immense pain.  I speak of him, because simply and beautifully, he is my son.   

When I talk about Xavier, I do so because I love him.  It has taken time to get a point where I can talk about him simply because I love him.  To a point where I can talk about him without the lingering sadness.  Where I can say his name without tears.  For any bereaved parent, this is a difficult and long-fought battle.  Talking about a child no longer in your arms is not a sign of weakness, or sliding back, but rather a testament to strength.   It is a part of integrating them into the fabric of life.  It is something to be celebrated and acknowledged.

If I choose to talk to someone about Xavier, I do so because I trust them with his memory.  I know that they will cherish him.  It is a gift, just as some-one speaking to me about Xavier is a gift.

When someone talks to me of Xavier, my heart skips with happiness.  When someone says, easily and happily, that Elijah looks like Xavier, I beam.  When someone tells me something reminded them of my son, I want to embrace them.

There is a beautiful piece of advice written by Elizabeth Edwards, oft quoted by bereaved parents:  

 “If you know someone who has lost a child or lost anybody who’s important to them, and you’re afraid to mention them because you think you might make them sad by reminding them that they died, they didn’t forget they died. You’re not reminding them. What you’re reminding them of is that you remember that they lived, and that’s a great, great gift.”

When a bereaved mother talks about their child, whether with a smile or with tears or with both, please accept it as a gift and a vote of extreme confidence in your understanding.  Do not be afraid to say their child’s name, but rather know that your remembrance brings more joy than pain.  Even if your kindness leads to tears – it’s only because you have given permission to drop the veil for a moment.

A dear friend of mine has written:

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A bereaved mother is, above all, a mother.  A child that has gone too soon is, above all, a much loved son or daughter.  And a parent, above all, loves each of their children.  In reality, it’s that simple.

Mothers Day

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There are days in the year that tear me in two.   Christmas, Birthdays, Fathers Day, Mothers Day.   There is the joy and the noise.  The handmade cards and the sticky kisses.  The impractical gifts and the restaurant meal. Hugs and laughter.  One side of the coin.  The other side yearns for solitude in the midst of all the excitement.  Wishes for a moment of a peace and reflection.  And more than anything, wishes another little voice joined in the commotion.

Mothers day is hard for a lot of people.  Those that have lost their own mums.  Those, like me, that have a child or children in heaven.  Those that have tried and tried to fall pregnant only to face another mother’s day without a baby in their arms.  Those that yearn with all their hearts for a child but know it’s a wish that will never be granted.    It is a day filled with flowers, breakfasts in bed and handmade cards.  But it also a day filled with pain and yearning for so many.   And all of those people deserve a little love on Mothers Day.

I am fortunate to be celebrating today with my two earth-side boys, my mum, my grandmother and my mother-in-law.   Surrounded by beautiful family.  There is, as always, much to be grateful for.  There is, as always, much to turn my mind from Xavier.  The pain of missing him, now just a dull ache where once it was piercing, seems at odds with the day.  And yet, it must be part of the day.  I find it easier to reconcile my feelings on his birthday or anniversary.  They are clearly days to be in remembrance of him.  Clearly days when tears and reflection are appropriate.  Days that belong just to him.  The days that tear me apart belong in part to my living family and in part to the one who has gone where I cannot.  These are the days when I must learn to integrate the joy and the sadness.

Today, I think of my mum, who is a beautiful, unique and talented soul.  She has given me everything and I love her more than she knows.  I think of my grandmother, who continues to live an enviably full life and is one of the most peaceful people I could ever meet.  I think of my mother in law, who never stops for even a moment and would do anything for her children and grandchildren.  I think of my boys.  My eldest, crazy and wild, funny and loving.   My youngest, gorgeous and curious, healing in his very bones.  My middle son, never far from my mind and always in my heart.

Happy Mothers Day to all.

 

Easter – when love triumphs

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Easter is approaching. The time of the year we celebrate love and life triumphing over death. Even in it’s pagan incarnation Easter is about welcoming the spring, a time of growth and newness. A time for birth and rebirth. The tender shoots of hope finally peeking through the cover of desolate winter.

After Xavier died, I wished for resurrection. When people would describe Mary as a grieving mother my heart would harden a little. For she had her son returned to her. She was given the miracle every bereaved parent begs for. Xavier was never returned to me in a physical sense, but the lasting relationship we share is a form of love triumphing over death.

In the yoga class I attend with Elijah, our instructor will often tell us to take a moment to nourish the bond between mother and child – the most un-breakable of all bonds. Whenever she says that, my mind wanders to Xavier. The bond between baby and mother cannot be severed. Not even by death. I was robbed of the physical relationship I had with Xavier by SIDS. But I could choose how much was stolen. The heavy burden of grief and the constant longing for what could have been threatened our continuing relationship. It took time to nurture and navigate a different kind of parenting but I am learning. I feel him close.

There are beautiful people and purposes in my life that would not have come to me if it wasn’t for Xavier. For a while I would question my attitude towards them. That I could not feel gratitude for things that existed due to Xaviers death. I feel differently now – a slight change of perspective. The positive things in my life that have come about because of Xavier are part of my relationship with him. They are not causally linked to his death, but rather his life, lived in the short span granted to us. There are so many beautiful things in my life because of him – not because he died, but because he was here. I do not believe that as a parent you can every truly accept the death of your child. Acceptance is popularly heralded as the last hurdle of grief. I do not think it is true. I think you reach a stage when you integrate the death of your child within your heart and your life. Where you can come to a point of resolution. For me, it was when the magnitude of love I hold for my son finally over-shadowed the magnitude of my pain. That took time and it took hope and it took faith.

And now these three remain: faith, hope and love. But the greatest of these is Love.

I hope Easter brings you all three and the last in copious amounts.

Parenting in Absentia … the guilt and the reality of parenting living children whilst grieving

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I remember the first time I ever paid for an iPhone app.   We were in the hospital not long after hearing the devastating news that Xavier would not be coming home with us.  Isaac was demanding attention I could not give.  I turned to technology as baby-sitter.  I relinquished  previous rules, gave him my phone and in a metaphorical sense, I never really asked for it back.

In those dark days after Xavier died I could not give Isaac the parenting he deserved.  He heard yes too often to requests for things when I had no fight.  He heard no too often to requests for my time and attention when I had none to give.   My wonderful sister in particular stepped in and looked after Isaac when I could not.  There was a period of time when I was completely absent as a parent.  My previous approach to parenting – to be present, to be fun, to be involved, to say “no” but then redirect attention to some brilliant new game or activity – all of it impossible.

Even in it, I knew I was being unfair to Isaac. I felt terrible guilt over it, yet I had no capacity to fix the situation.   He was never phsycially neglected,  but I feel like I missed the months of his life that followed Xavier’s death.   Like everything else, I went through the motions, whilst my mind was elsewhere.

Even as the darkest fog of grief lifted, my parenting had changed.  I was more permissive.   Isaac’s short term happiness, and even compliance, more important to me than the longer term effects.  It has been a hard Pandora’s box to try and close.   With the advent of school, some behaviours have crystallised as being of concern.   I look back to those days of absent parenting and wonder if I am now reaping what was sown.   And then I ask myself whether I am using grief as an excuse?

Most children go through a period of time when their parents’ attention and time for them contracts.  Whether it be a new baby or return to work, there comes a time when the best of parenting routines come unstuck.  And Isaac is certainly not the only five year old to be a little crazy, prone to the occasional tantrum, unhappy with the word “no” and fond of fighting games.

I can spend time with my guilt over my absent parenting.  I can beat myself about it and wish things to be different.   Or I can choose to change our present behaviour into something more positive.

So I have decided to do the following:

  1. Every morning, we will dance to William Pharrell’s “Happy”.  You cannot help but start the day on a positive note with that song in your head.  And it was the first song Elijah clapped to.  So it must be good.
  2. Every morning, we will talk about our intention for the day.  We will spend a moment or two discussing what positive thing we want out of that particular day.
  3. The Star Wars, the Ninjago, the Chima – they will no longer be a part of our week days.
  4. Because I am taking away something important from Isaac, I want to give him something.  We will work on a project each week.  It might be an art or craft project, a building project, or something else.  But we will do something creative together.
  5. We will start each day with some gentle yoga.  Every week Elijah and I attend a yoga class.  I might go into that class wound up and anxious – worried about various aspects of my life.  I come out of that class and I am no longer worried.  My problems have not magically been resolved, but my perspective is more realistic after spending time connecting my body to my mind.  If Isaac and I spend some time with yoga, I think it will help us both.

At then end of the day, children are enormously resilient.  My parenting in absentia will always bother me more than it has Isaac.

For those parenting living children and living in the thick fog of grief – be gentle with yourself.  You can only give what you can give.  Somedays that may not be very much at all.  That’s okay.  You are an amazing parent – you have made the choice to still be here with your living family.

For all parents, we can’t be perfect each day.  We can do our best each day.  Some days are going to be better than others, and even when it all goes wrong, there is always tomorrow to look forward to.

Becoming the New

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

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.