disease on to my son’s little life like some fucked-up medical degree: Stevie White, DMD. But that’s just how it was: one day you were considering the diagnosis and – pow! – your Wonderboy’s future was punched into the ether.
‘Yes. Sorry, this is hard.’
‘Take your time.’
I hesitated. I would indeed take time to explain everything to Thomas: DMD takes time.
‘DMD is a muscle-wasting disorder, a serious one, that mostly affects boys. It’s progressive. The weakness in the thighs starts at around age five. It makes walking more difficult and climbing the stairs, balancing … and obviously running …’
‘Poor kid.’
‘His callipers, or KAFOs – knee-ankle-foot orthoses – make life easier, although Stevie has better balance than most. Terrible rhythm though …’
(Badaboom! Nerve-soothing black joke for new boo.) I raised my sights, determined not to falter before I had picked off the devastating facts.
‘It is not curable—’
‘Really? God, but—’
‘No. It takes and takes until you have to think about things like sitting, ventilation, fractures and swallowing.’
‘No.’
‘It is rare. Affects 1 in 3,500 males and … the average life expectancy of DMD boys is twenty-seven years.’
‘Shit.’
Yes, Duchenne takes time; all of it, in the end. But that was why Stevie would hear over and over that he was my boy, my lovely little one. As long as he stayed my baby, he would be safe.
‘So you see, Thomas,’ I said. ‘Every moment counts.’
‘I do see. Oh. Darling.’
And just like that, I was not alone.
Entangling my limbs with his, I brightened the tone:
‘It’s fine. Stevie and I talk about it, you know? We even laugh, get silly about it. He doesn’t need to know it all. I tell him, “I will look after you always, sweetness. No need to worry, ever.”’
‘That’s good. And his splints, his callipers, does he have to …’
‘His “superlegs”, you mean? Yes, he wears his KAFOS all day long to help him, but none of that is a problem, I take care of it all.’
‘You’re a great mum.’
‘We’ve had some fantastic support, too. These girls, they call themselves Stevie’s Wonders and they’re a miracle, really. About eight months ago, I told this new nurse, Paula, about Stevie’s diagnosis and next thing all her young student mates started fundraising for him. They’ve raised over £12,000 so far. Amazing, isn’t it?’
I went on to tell him how my son had tried a ‘Wonderburger’ at the launch barbecue – cheese and double bacon! – how I had a framed photo of him with smears of it all over his smiley chin. How the girls had got serious about that smiley chin and next thing done a sponsored bike ride; how boyfriends had joined in with some extreme ironing stunt up a big hill; how a newsletter had emerged. Soon to come was a marathon walk, maybe something in the High Desford Gazette. It was without a doubt the most wonderful miracle.
‘They sound ace,’ said Thomas.
‘Yes, they are, totally. But’ – I eased up on an elbow – ‘I have never wanted Stevie’s needs to be anyone else’s problem. Do you get me? He’s my responsibility.’
Thomas raised himself up to meet my eye. ‘I get you. But help – support – is always better. Right?’
I kissed him in place of a reply. Stevie had always been my responsibility. I was still the one who needed to make everything all right for him. Our generous, warm, bacon-fat days together were destined to be short. Moreover, Duchenne’s was carried in a female carrier but overwhelmingly it affected the male offspring. Passed on, from the mother to the son. I was responsible, in the eyes of those who judged such things. All my fault. I was his cherisher, I had to be, whatever might happen, whatever had happened.
‘He’s a good boy, my baby. You’ll like him.’
‘Of course,’ said Thomas. ‘He does sound wonderful. You’re … Come here.’
After that night, I slapped on nicotine patches and chewed punitive mints after meals. By our third Friday we were doing dinner at the proper-bonkers Lunar (my next test for him: they name tapas-sized Portuguese dishes after dwarf planets and the décor is holiday-misadventures-on-acid, but the guy can cook). He saw past all the crazy-name petiscos, straight to me. And me? I could barely see past the mental fug of non-smoking and the heat-haze from Pluto’s pataniscas de bacalhau, or think past our awed mouths, or get past this interior tightening, this fresh hot-blooded ache …
My phone rang during pudding.
I saw the caller’s name. It took everything not to turn it off altogether – my fingers strained but I simply passed the water jug. Had to let it ring: Stevie was with Ange and my mobile was our mum-hotline. The ringing stopped.
‘What’s wrong?’ Thomas reached for my restless hand.
‘Nothing,’ I said. ‘Thought stupid PPI was dead already.’
I turned the ringtone down as low as it would go and raised a pastel de nata to his lips.
On our next date, I would take care of dinner.
The first time you cook for a man is important. It doesn’t just tell him about your tastes, it tells him what you think his tastes are. I had weighed and measured Thomas, more than he would ever know. And so I would cook for him, but not nursery food, no shepherd’s pie cuisine; I was nobody’s bloody nanny. It was summer, but I would not do him the usual platter of cracked shell and bivalve and sea juice. Despite the ordered hair, any fool could see that he was a man who might be persuaded to crunch, suck and snap a bone, when no one else was looking. Meat then, the best, rare sirloin. A bastardised tagliata. A well-hung porterhouse – charred, smeared in garlic, olive oil, lemon and Parmesan, on a bed of rosemary and rocket. Europe slain, seared and bloody on its greenery, there all for him on a plate.
‘I’m going to cook you something,’ I said. ‘Something simple, but a bit different.’
‘Oh good! I’ve always wanted to try real home-cooked Caribbean food.’
‘But, actually I—’
‘I mean, I’ve had a bit of jerk chicken once or twice at a barbecue, but that was just … they were from Devon.’
‘Uh-huh,’ I said.
Mean. It would have been mean, self-defeating and, as the kids had it, ‘awkward’, to say anything more than:
‘Uh-huh, I’m going to cook you up a real Jamaican treat.’
‘Great. What, might I ask?’
