Kintsugi.

Someone a while ago, told me about the Japanese practice of  kintsugi – where a cracked piece of pottery will be repaired, obviously, and explicitly, with gold.  Kintsugi recognises the beauty in the imperfect, and celebrates rather than hides the scars of a fall. And, in gilding the pieces together again, that piece of pottery is stronger than it was before it was broken at all.

Tomorrow – five years ago, Albie had his Rastelli surgery. And the day after tomorrow – five years ago, Albie stopped breathing.

This coming week, five years ago, I was shattered into full pieces on this life’s floor.

Time has made all those soul fissures less raw, but they are all still there. I have been waiting for the cracks to heal. Waiting and waiting.  Albie is here, scarred but fixed. Albie is well, for now, so I am grateful. But being grateful for now, doesn’t change what happened then. Five years on, and the feelings of terror from that time sit, mostly quiet, but still very keen, within me. You’ll know if you’ve lost someone, or experienced trauma yourself, that grief isn’t time bound. I fear the roll-eye from some of you for admitting that, but this is how it is.

So when I heard about kintsugi, and read about the practice, it gave me the frame for viewing the story of broken pieces differently.  There is great beauty and strength from any experience of breaking, but only if we own it rather than try to conceal it.

All of which is a long way of saying, we are approaching next week differently. We’re celebrating it. Calling it Family Week, and being thankful that we are a family of four. We’re keeping it super simple for Albie – and just expressing that this is the week in which his heart was fixed – but for us, we are going to be conscious of what happened and celebrate the gifts we have today because of  it all.

And, I hope, that in witnessing what happened, from the safe distance of  2017, that I can finally let August 2012, sit where it belongs. I don’t want to carry the trauma forward with me forever more. Life’s too short for baggage, and boy is this a trunk.

And so, I want to write out the 13th August, 2012.

I’m fairly circumspect about the following story – I think probably, this writing is very cathartic for me and of questionable value to you – so no need to read on, especially if you were one of the aforesaid roll-eyers. Tab close. 

Right about now, five very full years ago, we were about to sign consent forms for Albie’s surgery. We’d been warned it would be tough to do, but I was fairly resolute that I could do it without crying. We met with his surgeon and cardiologist in an unloved meeting room – with a whiteboard, a boardroom table and, centred forbodingly on it, a box of tissues.

The surgeon spoke of the operation that would happen. And much of it shocked me, despite my sure readiness.  I remember him saying they’d take the first one and a half hours of the operation to get all his lines in.  I would have nodded sagely in response, but I remember my mind swirling. One and a half hours out cold just to set him up. Oh god.

He went on, telling us a great deal that we already knew. That the Rastelli was open-heart surgery.  That Albie would be cooled right down so he is hypothermic throughout the repair.

Yes, I nod.

That they will cut through his sternum to access his heart. My eyes were fixed on his kind face, trying to hold it all.

Yes, I nod.

He jumps unexpectedly to the other end of the operation, and says the two edges of the breast bone will be put back together with steel wires.

Yes, okay, I nod. Break his bones.

And then the second phase, he starts –  the Rastelli repair itself. His heart will be stopped so that it can be opened and then we will repair it in a still environment……

I left his explanation as my eyes welled full, and despite the perfectly appropriate place for tears  (if not the night before your boys heart is stopped, then when?), I tutted myself and tried to hold back on tight to what he is saying.

The operation will take up to eight hours, he says. I knew they will be the longest hours of my life.

And then he listed the potential complications. We listened intently. They do this every night – and so despite the lowered, caring tone he was talking in, I could tell this is routine for him. I suppose calm should be reassuring, but it’s like someone reading through the car hire form before you get handed the keys – and there is just the smallest leak in his voice that tells me it’s late and he’s tired and he did this today and he needs to go home so he can do it again tomorrow. He just talked through potential paralysis, and heart failure and conduction issues and stroke and brain damage and kidney damage and plural effusions and wound infections and chylethorax fluid and heart arrythmias and death.

I nodded my head. to show I was there with him on all of this.

But I am actually far away, looking at me looking at him and wanting so badly to run. Run to my son. Run to him, take him, and run.

He goes through all of these complications and Marcus asks about the chance of death.

The surgeon doesn’t pause, they sit around 2-4%, he replies.

 

96- 98% chance of life are good odds, Marcus says. He has a way of wanting to bring light to every situation and I love him for this. I realise too that he is trying to convince himself as much as me.

We sign our consent and agree. Yes, tomorrow morning you can stop the heart of our son. Yes, tomorrow morning you will fix him so he can live.

This is okay, my Pollyanna says to myself. This is okay.

We leave and go back to our room.

And then there we were. This night before tomorrow.

How I ached to hold Albie to me. But my chest was so tight, and my throat such a lump and my eyes kept streaming, silent, completely unheralded tears. I knew my nerves were likely contagious and I didn’t want to worry him. Albie had the biggest battle of his life in the morning and a good night’s sleep before seemed a sensible place to start. So we simply bathed him, dressed him in brand new pyjamas, and watched him sleep.

I felt a darkness swirling around us that night, a forboding of what was to come next. I poo-pooed it, convincing myself it was paranoia and reassuring myself with the statistics of the meeting, just hours before.  Wispy premonitions, of something much worse than just the heart operation,  had snuck under our door and into my mind. I fell asleep this night, back then, listening to Prem Rewat, the guru that I press play on in my darkest hours.

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