Tag Archives: family

The Sun in Flight

Wild men who caught and sang the sun in flight

And learn, too late, they grieved it on its way

It’s been a crappy week, writes Celia. For the last ten days we’ve been in and out of hospital trying to work out what’s causing Henry’s mystery symptoms. Of course, the whole hemisphere is ill at the moment, and of course Hen’s not immune to this. But swelling lymph nodes and fatigue, I do not like.

Haircut

The last time was a full shave for chemo, this time it was a light trim

JD’s assuming it’s a self-limiting virus. This means he’s at work, working; probably thinking about what to have for tea tonight, or having a barney with a Daily Mail journalist. I’m spending the day standing at the kitchen counter checking my phone’s switched on and that it has a signal, should the hospital call. They really ought to have been in touch by now – they took his last bloods at 8 this morning – what have they seen? are they in a meeting about it? are they working out how to tell us? what will happen next?

The treatment for kids who relapse at this stage is unthinkable. Will we still be able to live in London? Where will Huck go to school if we don’t? What about the new job I’m supposed to start in two weeks?

This is not the way to exist. And it’s not how we have existed for the last two, nay five years, since life got tough on our kids’ health. After Huck definitively won his battle against extreme prematurity, septicaemia and a brain heamorrhage, I had been through enough to know how to live. When you’re having a good day, have a good day. Don’t spend it fretting about the next bad one. Feel the sun on your face. Or go to work, and work. No-one benefits from you shaking and staring at your phone for hours, willing someone to phone through an answer to your anxieties. Henry’s at school and going to his Xmas party this afternoon. That should, surely, count as a good day.

I am going back to see my therapist shortly, to see whether I can learn it all again. Because, whatever’s next for Henry, living in fear is not a help. It’s been creeping up on me for a while. And I know it’s probably linked, in part, to changes going on away from the world of Hen’s health. A couple of months ago I handed in my notice to the job where I’ve been happy and secure for some time. Ever since, I’ve kept on looking up at the heavens, waiting to be punished for my hubris. Who said I could have a child in remission and a new job? Just who, exactly, do I think I am?

My sister noticed I wasn’t myself on our half-term holiday in October. She pointed out to me that I was acting much more worried than usual. I know she was right because of the humungous number of shots I took of Henry on that holiday– the same picture, over and over again.

In the first few months after Henry went into remission, I took thousands of pictures. Multiple shots of the same scene, over and over. And I can’t delete them. I agonise over deleting even just one, in order to make room for more. What if we lost Henry, and what if Huck had to live with a fading memory of his beloved brother? What if I somehow inadvertently deleted the shot that would convey the essence of Henry – the one where he was flashing us an important message with the sole of his foot, or the back of his neck?

I have many, many shots of Henry on the beach from a sunny day in Majorca in October.

Majorca

Not quite getting the fullness of him

The sun was in his hair and I needed to trap it there. I clicked and clicked and couldn’t capture the way his curls catch and reflect the sunlight.

I know what I’m trying to do. Hence, the Dylan Thomas quote above. You can catch and sing the sun in flight, but you mustn’t learn, too late, that you were actually grieving, rather than singing, it on its way.

And the problem with trying to grasp and pin down the world every minute, is that you miss it in flight.

lock of hair

Curl

I took Henry for his first hair-cut (since it grew back after chemotherapy) last week, just after all the mystery symptoms came and our most recent run of hospital visits started. I couldn’t face the idea of it coming out again for more chemo, without having enjoyed one normal barber’s trip. I cut off a curl before we left. It’s in a paper package in a cupboard. It’s frozen in time, and it hasn’t done the job at all.

The sun is on Henry’s curls on his head, up in the playground at school right now.

Big girls and benefits (a post from Celia)

Safari ward corridor cricket at Great Ormond Street Hospital

Safari ward corridor cricket

Hello Team Henry. Sorry for the long silences and then a barrage. As you may know if you read JD’s posts, we’re right in the eye of the storm again, and it sort of makes you want to ‘write the f*** out of’ it, to paraphrase the great Caitlin Moran.

Hen’s being fab. His wee is bright red, his hair’s about to fall out again, his face is starting to swell because of the steroids, and he’s a complete hoot about it all. As anyone who read my overly-emotional Facebook update this morning will know, I’m knocked over by him, humbled and proud.

I forgot to mention Henry's new handsome hospital tutor

I forgot to mention Henry’s new handsome hospital tutor

And I’ve got a raging hangover – we have a few friends who have an uncanny knack of knowing exactly when we need to blow the cobwebs away with booze and good company, and we saw some of them last night. Hangovers make me verbose (more so than usual) and emotional, so be warned.

There are a few things I want to write about today, but they all come roughly from an empathy/admiration sort of place.

So firstly, we’ve felt very vulnerable a few times this year. I’d forgotten what it’s like to feel very vulnerable. To be honest, I think most middle-class urban dwellers rarely have occasion to feel vulnerable, and I’ve had almost two decades of urban middle-class dwelling. Apart from the nightmare we had when Huck arrived 13 weeks early, we’ve mostly lived in the bubble.

Hen’s in a clinical trial, and a few weeks ago we learned he’s been randomized to the treatment arm that’s untested. This made us think hard – can it possibly be right to put your beloved child through an untested treatment regime when they’re battling a frightful disease that may kill them? Can it possibly be right to pull out of the trial when you get into the slightly riskier group? If everyone did this there would be no medical trials, there would be no progress, and leukaemia, along with all other cancers, would claim the lives of all its victims.

That’s a real bugger of a decision to make, and we felt vulnerable. The only way we could deal with the situation was to do what all vulnerable people have to do – put your faith in the people and the institutions that are there to help you, and hope. So we’re still in the trial.

Oddly enough, it’s focused my mind on the benefits cap. The one that means quite a few vulnerable people in our neighbourhood and beyond will have to leave their homes and communities to live somewhere more cheaply. I learned a lot in the few years in the 90’s when I worked on what was then termed ‘Britain’s worst housing estate’, and I have been following the benefits cap with interest. I can see the sense in trying to lower the cost to the taxpayer given the sort of rents private landlords are charging to house people on benefits in London. There are plenty of better places the money could end up than in their pockets. It’s very hard to know what policy levers to pull to solve historic, chewy problems like this. But it’s fairly clear to most people that this is the wrong one.  There must be a less appalling solution.

What amazes me is that, until our recent stint of vulnerability, I was only mildly cross about it. Now I’m bloody furious.

Like many people I was pretty far to the left in my youth but gave up socialism when I started to live and work and get a better appreciation of how complicated life is and how little room there is for any dogma. But the lack of vulnerability we’ve ‘suffered’ from over the last couple of decades seems to have taken the edge off my ability to empathise effectively with people whose lives are very, very different from mine, and that’s not a good way to be. So while of course I’d much rather Henry was nowhere involved in the hard life-lessons JD and I are again being taught as parents, at the very least, we’re learning stuff and re-learning stuff we’d forgotten.

Next up is sort of about empathy, but mostly admiration.

When you’re a little girl you need to watch the bigger girls to learn how to behave. It’s one of the great joys of life. I’d never have thought that when I got to 40 and was someone’s Mum I’d still need to look at the bigger girls to know how to behave, but I damn’ well do. I think a lot these days about two people – a good friend who was a most excellent boss to me when I was 23 (back on Britain’s worst housing estate, in fact). I’ve spent the following 17 years of my career trying to be like her at work, but she’s also the big girl I often think of when I’m trying to handle what life’s throwing at me at home at the moment. Her name is Katie. She’s amazing, and you can read some of her wisdom here (this is an article about the loss of her baby son James).  She’s had to face some dreadful life experiences. And she has kept on living, kept on contributing everything she has, has kept her sense of humour and is bringing up two amazing kids who have been very kind to Henry.

The other person is my Aunty. She’s well into her eighties now. She also lost her son, when he was 9 years old. He died a few days before she gave birth to her fifth child. She kept on, she never forgot him, and she was and is a great mother to her other four kids.

I suppose they’re on my mind a lot because the horror of losing your child is something that’s very difficult to grasp and I can’t imagine what it’s like. But I’ve tried a few times over the last few months and it makes me think of Katie and Aunty K with increasing amazement and wonder. They are fantastic big girls to have in your life, and I owe them both a debt of thanks for many reasons. Not least as they have given me some vital clues about how to live when you’re struggling to keep the show on the road.

Anyway, I think I should stop there. It’s a lazy Saturday. And I just overheard this, so I’m off to join in the conversation:

Henry: “Dad, you know what people say is the most powerfulest thing in the world?”

JD: “Love?”

Henry: “No! The tip of a pencil!”

JD: “Henry, that’s great.”

Henry: “But Dad, they’re wrong. It’s my medicine that’s the most powerfulest thing in the world.”