‘Earthquakes, and the Light They Let In’

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Kate Gross advised Prime Ministers, set up at international NGO and had two boys. I didn’t know her, but she was by all accounts brilliant, committed, and a good friend of a friend of mine. Aged 36 she died of colon cancer. In her last year she wrote a book, ‘Late Fragments’, in order to create something while her life was narrowing and write down the things she wanted her friends and family to know. It’s a powerful book.

She and her family have experienced a kind of heartbreak that I am so fortunate to not fully understand. But much of what she writes about does resonate with me: how she has found herself reacting to the worst kind of adversity, what is important when the shit hits the fan, and unexpected silver linings.

She describes the sadness and horror following her diagnosis, and a period of misery, but also how at some point she found the sadness settling in and leaving space for other things. I recognise her description of coping with a change of circumstance that you neither anticipated nor wanted, that ‘I am not unusually unfeeling, but am basically wired for happiness’. One finds a new normal.

People often commiserate with me about how tough our lives are, and ask how we cope. The answer depends a lot on what mood I’m in, and how well I know the person asking, but broadly: we now know no different. This is our normal. It is entirely accidental – there is no rhyme or reason why my child is disabled rather than yours, but he is, and there’s only so long you can spend letting the sadness take over. After the ‘quake’, you find a way to accommodate the changes.

‘The tough bit is not the start, it’s the bit where you just have to put your head down and keep going; it’s an endurance sport. Living with the after-effects of the quake is much harder than surviving the initial impact. There is a point when everyone else has gone back to normal life, when the spotlight isn’t on you and your crisis any more, and it is then that things are at their toughest.’

And no-one understands that, and so much more, better than one’s immediate family. Gross describes her love for her sister, and her feeling that she’s letting her parents down by dying.

‘Of course they will have their own distinct grief. But they will keep it to themselves. They know this story isn’t about them. So they are there in the background, making things good. Encouraging me when I need courage. Reading to my children when I am too tired and broken to do it. Leaving food in my freezer, mowing the lawn, replacing the lightbulbs, quietly making every little thing all right.’

If you have a family who you’re close to, both physically and emotionally, they are the ones providing the scaffolding. We didn’t choose to have a really sick child who turned out to be severely disabled, and nor did our families. The effect on James and me is obvious. Less clear is the impact on our parents and siblings who have the fierceness of their own love for their grandson or nephew, but also have to watch us struggle. Their lives, both emotionally and practically, are shaped by Sam’s needs. They help and support him and us, willingly and uncomplainingly. The ripples from the quake spread wide.

Which brings me to the last of Kate Gross’s eloquent points about a life lived in adversity: ‘Earthquakes, and the Light They Let In’. If your life is not always easy, then you develop a fine appreciation of the ordinary being extraordinary. For me: a child who kisses you spontaneously, or who can run in the rain, or another child who has spent five years trying to rub his own eyes and has just learnt how to do it.

If you have had enough sleep to lift your eyes and look around, there is much to be thankful for. We are here. We have beautiful boys who force open the chinks and let the light in.

Photo: Big Smile Photography

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‘That’s disgusting’

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Sam was ill recently, which meant he was off school and had to come with me to take Eli to nursery. He was a trooper, considering he had a fever, and was not as grumpy as I expected as we walked round the corner.

Eli goes to Sam’s old nursery and since Sam only left a year ago lots of the kids (and most of the staff) still know him and are excited to see him. This means he gets greeted enthusiastically by various adults as we enter, and then lots of kids come over to him as we go in to the playroom. I think I enjoy this familiarity more than he does.

This time we entered the room with Eli holding on to me, because he wanted to go home, such is the whim of a 3 year old who likes nursery. As I negotiated doors that don’t stay open, a wheelchair with one hand, and a clingy Eli with the other, a whisper went round the room that Sam was here. A little gang of 2-4 year olds came over and crowded round Sam, touching his legs and holding his hands. Truth be told, Sam isn’t hugely keen on this level of physical proximity from a gang of small (unpredictable) small children, but it’s quite a lovely thing to watch.

Then, a girl (probably 3 years old) pointed at Sam’s face.

‘That’s disgusting’, she said.

She meant the dribble. Sam’s lack of control of his tongue and mouth mean he can’t talk or eat, and he also can’t control his saliva. He can’t stop dribbling, and in fact if he’s excited, nauseous or stressed (such as when six children are crowding him) his tongue whirrs around in his mouth, increasing the amount he dribbles.

‘No, it’s not,’ I said. ‘It’s just dribble. He’s dribbling because he can’t help it. Sam’s not disgusting.’

Then I dabbed his mouth with the bib he always wears, got distracted by Eli’s ongoing emotional crisis, and the kids talked about something else. While attempting to engage Eli in something that wasn’t holding on to my leg, Sam lost patience with all the hanging around combined with fever and children, and burst in to tears. Eli started crying in sympathy (increasingly common these days – really sweet but emotionally taxing) and a lovely nursery worker came to take Eli out of my arms so that I could take Sam home. It was a great little outing.

Obviously that girl didn’t intend to be mean. She isn’t old enough to realise any of the implications of what she was saying and is just repeating what she’s been told at some point. I mean, if we took everything small children said as insults, then the locksmith who came to our house yesterday might have walked out when Eli told him he was a bum, rather than fitting the window locks which will hopefully prevent us being burgled again. [Side note: they stole Sam’s iPad which we rely on daily. It’s unfeasibly irritating.]

This incident made me think again about how we manage Sam’s dribbling. In the past we have put Hyoscine patches behind his ears, which dry up secretions and so reduce the amount of saliva coming out of his mouth. However, Sam has a tendency towards a blocked nose at the best of times, and after nights spent holding him next to a hot shower in order to clear congestion, we didn’t feel reduced dribbling was worth difficulty in breathing.

In the meantime, we’ve just got used to it. Sam always wears a bandana bib to absorb any dribble, it’s become his signature look. The amount varies hugely – some days he can wear the same bib all day and we barely notice an issue, other days the dribbling is almost constant. We dab his mouth with the bib without even noticing.

But mainly, we haven’t done anything about it because we’re not sure Sam is that bothered. He occasionally gets a sore chin, but it’s easily treated with cream. I’m not convinced that Sam realises he dribbles, and if he does I don’t think he thinks it’s a problem. There are options to surgically reposition salivary glands, or take or increase medication. or inject Botox. All of these would involve recovery periods, side effects or disruption. Is any of it worth it if Sam doesn’t perceive a problem?

Unless. Did he notice the girl saying he was disgusting? How often does that happen that we don’t hear or realise? People stare at him sometimes – is this because of his disability or because he’s dribbling? Would reduced dribbling reduce the staring, or decrease some people’s level of disgust? How big a deal is some dribbling – I come from the perspective of having recently toilet-trained a small boy, so a bit or dribble is not high on my list of horrible things. If you’re an adult and really offended by some saliva, maybe you need to piss off.

My instinct is that we don’t interfere until Sam is annoyed by his dribble, or becomes aware of others noticing it. We can’t put him through invasive procedures or risk side-effects of drugs because we, or others, don’t like a bit of saliva, but I’m five years in to a world of bibs and dribble and am perhaps uncommonly blind to the issue. And maybe I haven’t factored in the honesty and unintended insults of children.