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.

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.

Many 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.

In 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.

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.