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 Ben’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