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“A portrait of my child, once a week, every week, in 2016.”

We had a bit of an epic day of travelling last week, me and Arthur.

It was the funeral of the father of one of my oldest friends up in Stourbridge, and I really wanted to be there. It meant a crack of dawn start and eight hours on peak hour trains to get there and back from Devon, but fortunately this little man took it all in his stride.

He is such good company, and so curious about the world. I just can’t believe how grown up he’s getting.

Linking up with Jodi at Practising Simplicity for The 52 Project. 

On pulling together and pulling through

I remember the day at the start of last summer when the nightmare began – for me anyway.

I was at a blogging conference in London, and had just stepped out to get some fresh air when I picked up the call from my mum. My Aunty Jan was sick – nothing too serious, but she had a jaundice that she couldn’t shake and they were starting to worry there might be something wrong with her liver. She wanted to pick Leigh’s brains who, fresh out of his fourth year med school exams, was looking after Arthur at the time.

We discussed it over the next few days, confused but not overly concerned. Jan was healthy, strong and active – it would just be a weird infection, surely, that would go away on its own.

Except it didn’t.

Over the next couple of weeks her condition worsened daily. She was admitted to hospital, the doctors still none the wiser of the cause but increasingly concerned about the impact it was having on her body. Both Jan and my Uncle Tony were subjected to repeated questions about their lifestyle – had she been an alcoholic the cause, and the treatment, would have been somewhat easier to discern.

But she wasn’t, and she kept getting worse.

At hospital in Truro, Jan’s other organs began to suffer, and the doctors had no choice but to put her into a coma to try to conserve what strength she had left. Now on the super-critical list for a transplant she was transferred by helicopter to King’s College Hospital in London at the earliest opportunity.

She went straight to the top of the list for a suitable organ, leaving us all in disbelief: how was it possible that this strong, youthful woman, who we had partied with at my brother’s wedding six short weeks before, was now battling for her life – the cause of her illness still evading the highly qualified team who was looking after her.

Tony kept vigil at her bedside, updating us all with an incredibly erudite commentary of the surreal and heart-stopping experiences that were befalling them daily, always careful to praise the exceptional care they were receiving.

None of us wanted to give up hope, but it became increasingly hard to believe that this nightmare could possibly have a positive outcome.

And then, one day, the tide turned.

A viable match was found – a liver that was healthy enough, in theory at least, to cope with the damage that had already been done to Jan’s other organs. The risks of surgery were huge, but as Tony put it ‘without the transplant there are no options’; and so they took it.

The operation was a success, though in its immediate aftermath there were still fears of infection, rejection and thrombosis. We were all on tenterhooks waiting for Tony’s updates, and there was a shared sharp intake of breath when two days after the transplant Jan was returned to theatre to fix a bleed. She made it through that, and began the journey towards breathing independently as her body slowly began to heal itself.

Throughout this journey, Tony continued to stress the ‘fantastic’ level of care that Jan received. In his words, ‘Jeremy Hunt should spend a weekend up here and then hang his head in shame!’

And he should know – they spent six long weeks in Liver Intensive Care, and witnessed at first hand the miracles that can be achieved within our NHS. Having learnt to breathe again, Jan went through the gruelling process of learning to speak and then to walk, assisted by rigorous and determined physiotherapists. In the middle of August, she was transferred from London to Derriford in Plymouth, and two weeks later – a year ago this Sunday – she was discharged, and finally able to go home.

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The recovery journey didn’t quite stop there of course. In fact it never really will. But the degree of progress that has been made in that year is quite astounding.

It is all really quite astounding.

Tony shared with me the comments of Jan’s consultant at her most recent check-up, who admitted ‘If I was a betting man I wouldn’t have put money on you pulling through’. Tony said ‘he went on to qualify that statement explaining that so many things had to line up to ensure her survival – management of her transfer to King’s, maintenance of her condition in the induced coma, monitoring and treatment of the various stages of multi organ failure, avoidance of infection, identification of a suitable donor. Whilst knowing that up front would have terrified us, looking back we see nothing but positivity.’

Next Saturday, Tony is rowing in the Thames Great River Race to raise money for the Kings College Hospital Charity: 21.5 miles down the Thames in a Cornish Pilot Gig. I would love it if you could sponsor him – whatever amount you can spare would be hugely gratefully received.

At a time when NHS budgets are being slashed, it is more important than ever that the funds that support vital research are replenished whenever they can be. The resident professors at King’s, as Tony and Jan discovered when they recently went back to the hospital that saved her life for a behind the scenes tour, have a clear development plan for how they can optimise care from paediatrics right through to geriatric patients. But they need the money to do this.

As well as your sponsorship (thank you) there are two more things I ask of you as I reflect on this incredible journey my lovely Aunty has been on.

If you are not already signed up, please consider adding your name to the organ donation register. And if you ever find yourself in the heartbreaking position that the family who gave Jan another chance at life were in, please try to remember the incredible gift your own loss and sorrow can bring.

And finally, support our NHS.

It is more fragile now than it has ever been in its seventy year history, and we need to pull together to ensure that the exceptional care that saved Jan’s life is not undermined by political and economic game playing. It is our NHS, and you never know when you might need it. Make sure you are there for it when it needs you.

 

 

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“A portrait of my child, once a week, every week, in 2016.”

A moment of calm in the midst of racing around the headland on his balance bike.

He didn’t know I was watching, and just stopped and sat down: playing with the grass and contemplating the world.

Minutes later he was off again, but there is something about the quiet contentment of this picture that I love.

 

Linking up with Jodi at Practising Simplicity for The 52 Project. 

An icy experiment

The unschooling diaries: week thirty-one

A new book arrived in the post last week, and it’s been inspiring Arthur since he first set eyes on it. He has been particularly keen to try the ‘icy orbs’ – balloons, ice, food colouring, what’s not to love?

He reminded me of this again over dinner the other day. I filled a balloon with water, put it in a bowl inside the freezer, and the next morning we had a ball of ice all ready to be unwrapped…

Even at this stage Arthur was fascinated. We talked about how there seemed to be steam coming off the ice, and how it was sticky when he touched it (and also very, very c-c-c-cold).

More for my sake than his, we went through the motions of the activity in the book. Arthur sprinkled on some salt, and then we added food colouring, watching it trickle down the pits in the ice and the cracks that reached down into its depths. He was fairly interested in this, especially when we got a torch out to shine against it, but he was more intrigued to see what would happen if he drove vehicles across the surface of the now textured and colourful orb…

Driving vehicles soon progressed to tapping with a spoon… And then banging… And at that point we moved proceedings outside. He had more space to examine it there too, insisting on taking with him his goggles and a magnifying glass.

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Then followed squeals of delight as he banged away, and fragments of ice flew off across the deck.

This all escalated quite quickly, and he was soon smashing away at the orb and insisting that I joined in, watching as the sphere split and we could examine the passage of the coloured streams within.

He then wanted to know what would happen if we put hot water on it… So we did… And as the pieces of ice got smaller he threw them up into the air and watched as they broke to pieces on impact with the ground, fragments skitting away.

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Finally, he could not resist but out a piece of ice into his mouth. I’d been reluctant when it had been covered in salt and food colouring (and then who knows what else in the garden!), but decided that the pieces left after the outside layers had been melted away were probably innocuous enough.

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All in all it was a very satisfying hour or so of experimentation. I couldn’t pinpoint exactly what we learnt, but that’s mainly because there are so many things to choose from.

Most important of all though was the joy Arthur found in making discoveries for himself. And if he continues to be this enthusiastic about seeking out inspiration I predict many more hours of spontaneous discovery to come!

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“A portrait of my child, once a week, every week, in 2016.”

Campfires, wild swimming, messing about with guitars: we never meant to have Arthur with us on our romantic anniversary escape to a safari tent on Dartmoor, but when the the universe conspired against us we decided to go with it.

As it turned out, it was a magical weekend nonetheless. So many special moments for our little family, made especially so by the fact that they were never really supposed to happen.

We will go back one day, as a couple, to this little corner of paradise. But we would not have spent this weekend any other way.

Linking up with Jodi at Practising Simplicity for The 52 Project. 

Arthur’s imaginary menagerie

The unschooling diaries: week thirty

We seem to have acquired, over the past week or so, two cats, two dogs, and a fish. Oh, and an Orca whale. They’re very small, and not entirely visible, but to Arthur they are very real indeed.

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The first of these creatures appeared one day as we were settling down for a morning snuggle. Arthur was about to climb into my bed when he proclaimed that he had forgotten his cat. When I asked him to tell me a bit more about it, he said the cat had been on the shelf in my study and he had reached up and taken him down. But he had accidentally left him in the bath.

Curious, and not recalling a cat on my bookshelves, I went downstairs and checked the bathroom. I saw nothing, but Arthur follow me, peered around my legs, and reached in to retrieve his pet.

She came everywhere with us, and there were regularly brief moments of panic when he was worried he had lost her. He introduced her to his friend when we went out for the day, and explained that his cat was brown with purple eyes.

The second cat appeared when we were sat in another friend’s garden. We were chatting about this first pet, and how she had miraculously come into our lives, when Arthur suddenly exclaimed “Oh, there’s another one!”. He had come down from the clouds, apparently, and was brown too – but with yellow eyes.

We were heading off from there straight to a festival, so put both of the cats into Arthur’s rucksack and went on our way.

Over the course of the weekend he acquired two dogs, and a fish has appeared at some point in the past couple of days.

(I think he got that one from Daddy, who invented his own invisible fish to keep Arthur company.)

Daddy has tried to explain too that the wonderful thing about these particular pets is that they are always there, inside your heart, even if you think that you can’t see them. And that’s been important, because since Arthur’s imagination created his animals it seems to have had trouble keeping hold of them. Especially at night, when he has woken crying, afraid that they are lost.

In the light of day they are easier to conjure – he will often point to the place in the room where they are, or tell me that they are licking my feet. At night, though, I wonder whether they point to an underlying anxiety.

He called me into his room as I was writing this, panicked that he couldn’t see his cats and dogs and fish and asking to have the light on. I pondered for a moment, and suggested that they had perhaps gone off exploring, as animals often do.

Arthur seemed happy to accept that they were in his garden, and as he snuggled down beneath his covers added that he had a whale now too. An Orca, apparently, who was sat beside him on the pillow.

Such a wonderful menagerie; such a wonderful imagination.

Never lose that, little one.

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