His third birthday and an unwelcome guest: Anger

Tomorrow is Xavier’s birthday. He would be three. It’s hard not to think of the things I should be doing. Buying balloons, baking a cake, wrapping presents.

Instead, I stole a few moments to make him a prayer flag. I make him one ever year.

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I chose three hearts and three butterflies. Signifying the age he would he. Representing my three sons. It hangs, pure and white, against the aged flags that have fluttered on the balcony for so long now. They are yellowing and starting to become brittle. I like these changes. The way the flags evolve and change. The way Xavier never will.

I want to write him a poem, but the words that used to flow so easily are stilted now. Once upon a time he whispered poetry into my ear and I caught the words. He was so close. He feels bewilderingly far away.

The pain has eased. Because he does not occupy my every waking thought, life has returned to the safe harbours of normal. But birthdays are birthdays and anniversaries are anniversaries. They are tough. There is no opting out.

Every year is slightly different. This year I am angry. A new kind of angry. Not just angry that he died – that came to be the moment he left. Not just angry at myself for not protecting him – that anger was born when he took his last breath. But angry that I have to think about celebrating the life of a dead child at all. Angry that no matter how far I row away from grief, these dates will always draw me back. Angry that I am snapping at friends and parenting in absentia, as my mind wanders elsewhere. Angry that I apparently have no control over that. Angry that I want to spend time with him and on his memory, but that my busy life has robbed me of that time. Angry that I don’t just say NO to those other things and spent the precious time I can with my son. Angry that I am angry.

Angry that I am the mother of a dead child.

I don’t want to be angry. I want to be the best mother I can for all my sons. I want to remember my Xavier with love and devotion. I want to be tender and bereft, not angry and thrashing. I find conflict difficult. Even internal conflict.

My dearest boy, I love you still. Even when you feel far away, even when life seems to move away from you, even when there are days when my thoughts don’t wander to your side, even when the years place distance between us that I cannot bridge. I love you still.

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What if we reacted differently to the news?

What If?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.

The ones who dance to a different kind of music

the round pegsMany of the days following Xavier’s death are a blur. Others, I remember with clarity. I think it was a month or so after we had said good-bye and I was playing in the park with Isaac. It was quiet. A school day. We had the swing set to ourselves before a group of young adults arrived.

They were accompanied by two carers and it was clear that these were kids with special needs. Amongst them, a girl around fifteen who would never reach a mental age beyond about three.  A boy, with no control over his body, all limbs like fourteen year old boys are.

It was the second time in as many weeks that I had encountered such a group. It felt like the universe was trying to tell me something.

The carers approached me nervously and asked if I minded them being there.  Apparently there had been issues in the past.  Of course we didn’t mind I said. And I smiled and tried to convey all the things: support, acceptance, understanding (although how could I possibly understand). And I felt the other things: relief my living child was healthy and able-bodied, pity, embarrassment at my own discomfort, curiosity about whether this was ever Xavier’s fate. Heart-broken to see the fifteen year old girl squeal in utter delight when pushed on a swing designed for a much younger child. Helpless as the teenaged boy tried to engage me in conversation when I couldn’t understand what he was trying to say. He said something. I said something back and hoped it was right.  This continued for a little while and I started chatting to one of the carers.

They offered relief for the parents of the kids – a few hours for those parents to regroup and rest.  And as I watched these wonderful carers with their kids, I couldn’t help but wonder, if Xavier’s story had been different, if he had lived but with a disability, would  I have coped? Would I have been strong enough? It is a ridiculous question.  If someone had told me that I would not only survive but eventually thrive after the death of one of my children, I would not have believed them.  We do what we do, not because we are strong but because strength is the only choice available to us.

If Xavier had lived but with severe brain damage, I would have found the strength just as I found the strength to cope with his death. I remember holding his hand before receiving his fatal diagnosis. He was tied up in machines and his soul was already passing, but I did not know it then. I whispered to him, I know you’ll be a little different.  But that’s okay. I will love you no matter what and we will make it work.  I still clung to the idea that he could be saved, maybe not all of him, but some integral part of him would remain with us.  I would have done anything for that to be the case. But that was not his story.

Within my circle of family and friends, there are children with special needs. Some are immediately apparent and others are not. At times I am not sure what is more difficult: the visible or invisible differences. There are varying degrees of help needed and help offered. I see the parents of these gorgeous kids go into bat every day.  They advocate for their children, champion them, raise awareness and challenge pre-conceptions. I see them worry about their child that doesn’t quite fit into the societal norm, the round pegs and the square holes. I see them worry about their other children and whether they are doing the right thing by them. I see them and I am in awe but they say they are only doing the best they can – and what else can they do? They say they would not have chosen this path if it were offered them, but now they cannot imagine a different way.
I remember being in the thick of grief of wishing for a day off.  I didn’t want the grief to go away, it was too much a tie to Xavier. But I just wanted a day, one day, when I wasn’t a bereaved parent. One day without the weight.  One day of freedom. I imagine that parents of kids with special needs might feel that at times.  I know that they love their kids with heart and soul and mind but they receive little respite from the worry, the struggle, the pressure.  I thank those carers I met in the park for the gift they give to parents. Those moments to breathe.
And for those parents of children who stray from the well-trodden paths, who dance to music I can’t hear and march to a different drum-beat, thank you for what you do.  For your love and your bravery and for making your childrens’ lives beautiful.

What this blog is. Why this blog is.

IMG_3363In the weeks after Xavier’s death, I spent a lot of time online.  I would search for those with similar stories.  Those that were grieving in the way I was.  I would search for hope in the words of those who were further ahead in their grief.  I would search for understanding in the words of those who had recently lost.  The SIDS and Kids forum became a sanctuary for me.  I would check it constantly – not just to see if anyone had replied to my own thread – but because I hoped there would be some small new bit of information.  Some words that I could take with me through the day and that would give me comfort.

Through that forum I met a wonderful mother who had also lost her son.  She was grieving in a similar way to what I was.  Her eloquent and articulate words struck my soul and we struck up an online friendship.  We emailed each other for months and month – epic emails with our hearts poured into them.  I would be struggling with something and she would come back with clarity.   She would be wrestling with a unknown feeling and I would put my finger on it.  She became my rock and her emails the highlight of any given day.  There was love and healing and magic in those email exchanges.  They allowed me to mother my son, share my son and work through my grief.  They allowed me to get to know her son, even though he was in a place I could not go.  Whilst we are both now busy with new little additions to our families, our love for each other, and our love for each other’s boys continues.  We are bound by words.

Once Elijah I was born, I felt I wanted to reach out to anyone who was searching the internet as I had been.  Those that were looking for words to comfort them.  That is why this blog was born alongside my rainbow baby.  Over time, I have blogged about things other than loss.  I had ideas in my head that I wanted to express and this blog provided a platform.  I have recently started a new blog with a dear girlfriend, and that will become the place I blog about parenting my living boys and the million ideas that race around in my brain.  This blog will be solely dedicated to positive grieving and connecting with Xavier.  This place will belong to him.  And it will be a safe place for those searching for respite after losing their child.

I believe in the power of words.  I believe that articulating a feeling gives you power over it.  I believe that writing down a fear helps dissolve it. I believe that words connect people.  I believe that words can pave a road to healing.

That is why this blog is.

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.

Clipping their wings?

In our house we don’t just greet the day, we launch a full-on assault on the morning.  As soon as it hits 6am, Isaac barrels into our room, full of energy and verve.  There is no slow wake up, although N bravely and resolutely pretends to sleep through it all.   Before kids I considered myself a morning person.  I would get up early and enjoy a (hot) cup of tea, watch the sunrise and read.   It was gentle.  There is no gentle anymore.  Isaac goes from zero to a hundred at a pace that would spin the head of any race car driver.  

For the past two weeks his extreme energy have filled my days.  I am unsure whether I had forgotten his intensity or whether the constrains of school meant it was building all semester.  But my little boy was in full flight over the break. His energy fills me with awe, is slightly terrifying and is mostly exhausting.   I find myself losing patience, not because he is naughty (although we have plenty of that too) but because the sheer pace of him fatigues me.   I have asked him to turn it down, to calm down, to take a breath, to lower the intensity.   When I ask why he is so full on, he replies, wide eyed, “I am just so excited”.  “About what, my love”, I ask.  The eyes open wider: “About everything mummy!”  

Everything is exciting when you are five year old boy.   I didn’t grow up with brothers but  close friends of mum and dad at our church had boys.  I remember their manic energy.  My sister and I would thrill to their madness.  Crazy antics undertaken for no reason other than they could.   We would giggle and call them “bonkers” which would only send them to an even sillier place.  I’d forgotten all about those boys until I saw their behaviour mirrored in my son.  And I worry that there are limited places for that energy to unfurl.  

I often speak to other parents about how differently we do things from our own parents.   I imagine we are romanticising a little. I don’t think every parent in the seventies and eighties sent their children off in the morning, blithely unaware of their whereabouts and didn’t expect them home until dinner.  But they certainly didn’t hover as we do.    They gave us room and space to make mistakes and figure our way out of them.   Now, dangers real and imagined stymy that space.  It feels likes the larger community is quick to tut tut and point out parenting flaws, but less inclined to help recreate a space where children can exercise the freedom we once enjoyed.  

I am a cautious parent – it’s hard not to be when you have lost a child.  But I also have a sense of fatalism that I didn’t before.  We simply cannot protect our kids from everything.   Xavier died doing nothing more dangerous than sleeping.   When fate points its bony finger at your family, there is nothing you can do.   In reality, there aren’t more evil people around than there used to be – we are just hyper-aware of when bad things happen.   It is not good luck that protects our children – it’s incredibly bad luck to have something happen to them.  We don’t live in a world full of bad people, but we have created a community were people are scared to do the right thing for fear of being judged as doing the wrong thing.  

And I wonder if our collective fear is stopping our children from finding their wings and soaring.

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

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.