Is this when I become truly grateful for Leo’s extra chromosome? Is that the only thing that might save him?
C xxx
Chapter Five
The making of Leo Morris turned out to be far harder than Richard or I had thought it would be. We were young and fit, we assumed we would have as much sex as possible and then a tiny Richard or a miniature me would appear. The first part was easy enough but the second proved almost impossible.
All around us our friends were hatching in droves – except Simon; every time he met a suitable girl she’d turn out to be too high maintenance or unwilling to wait while he went off on yet another expedition.
One by one, our couples friends – and even a few single ones – dropped out of the restaurant meals and the theatre evenings and stayed in with their new wonder – or wonders as it turned out for a couple of them.
But for Richard and me, nothing. We didn’t worry about it: time was on our side and we knew these things aren’t always as easy as people would like, but it was still hard every time I shopped for another baby present or wrote out the message – the one we longed to hear – on a congratulations card.
And then, out of nowhere and with no intervention other than our silent pleading with the universe, we got Leo. It was a perfect pregnancy, marked out at first by summer strolls through London parks and, later, by Christmas shopping trips around the traditional stores, breathless with excitement at how different our shopping would be for the next Christmas and all the ones after that, how much our priorities would have changed by then.
There were a few raised markers in some of the tests, but none of them claimed to be definite, just that they might indicate a higher risk of Down’s syndrome. We concentrated on the words ‘might’ and ‘risk’ rather than worrying unnecessarily. And then, in the last scan of my pregnancy, they found that Leo had a tiny hole in his heart, tiny but still a significant danger for his minuscule body. That was far more of a worry than any chromosome condition might or might not be.
Richard was in robust health back then, a strong and emotionally intelligent man. I know he was as frightened as me, but he covered my hand with his, meshing a finger between each of mine. ‘Down’s syndrome isn’t going to kill him,’ he said, ‘so let’s not worry about that.’ The unspoken part of the sentence was, ‘But a tiny anomaly, measured in micromillimetres, could.’
Leo has spent nineteen years proving what an extraordinary man he is but his first fight, the one he and Richard did by themselves in the early hours of that cold February morning was his hardest. Leo was taken into surgery for his first heart repair when he weighed less than two bags of sugar. I was spared the worst of it by a general anaesthetic and three blood transfusions.
Richard, who thought he might lose both of us, sat in the waiting room, looking anxiously up and down the corridor for anyone wearing surgeon’s scrubs; hoping for one who’d saved his wife and one who’d salvaged his son.
By the time we were all reunited, Leo’s eyes were open. We knew by then that the ‘maybe’ diagnosis was a real one, but we also knew our baby was out of danger for the time being. Tiny beads of water glistened like crystals between his long eyelashes, and his black pupils searched round the shapes of us for focus.
‘He’s absolutely perfect,’ Richard whispered. ‘We’ve hit the bloody jackpot.’
*
I’ve sat in my bedroom since lunchtime, and Leo in his. We can’t sustain that for the rest of our lives. Leo is grumbling to himself, mostly about me, and occasionally throws his arms up in despair. I’ve tried to settle him to read, to draw, but he’s too agitated by all the recent change, and too bored without anything properly organised to do. The only people who can improve our lot are us.
‘Come on.’ My jolly let’s-do-this face is only skin deep but it’s better than moping in here all day. ‘I invoke the Nice Day Rule.’
‘It’s not a nice day,’ Leo says. ‘It is – in fact – a very boring day. A bad day.’
‘Let’s change that then.’ I pull on my trainers. ‘Come on, we’ll check out the gardens, then we’ll go and do some shopping. What would you like for supper?’
Leo runs through a list of options as he puts his shoes on. ‘Anchovies, tomatoes, peppers. And linguine.’
I wonder, without much faith, whether the village shop has anchovies or linguine. ‘Great choice. Come on.’
*
We head right at the bottom of our stairs and into the long corridor that leads to the library – there must be doors somewhere along here that lead to the garden. We could go through the tiny one at the end of the kitchen passageway, but I’m trying to avoid Araminta.
Leo has bucked up a little and is ahead of me, his commentary lighter now – some of it is even sung.
We follow the arrow-shaped signs that direct us to ‘the library’ – we both enjoy books. Suddenly, about twenty feet or so away from me, Leo stops. He is bathed in light, haloed amber and glittering. I see him raise his head, look upwards towards the sky. He spins – slowly – on the spot as I walk towards him.
This is the huge glass dome. We are standing underneath metre after metre of glass, curving up and away from us into a perfect bubble above our heads. All around its circumference, from the ground up to what must be midway up the first floor of the house, are shelves and shelves of leather-bound books, perfectly arranged and squeezed in next to each other in matching sizes.
Ladders scale the cliffs of books, reaching up over shelf after shelf and, every now and again, a banner flies like an injured bird, dramatic colours hanging limply. There is an air of dust about the place, the upper reaches can’t have been cleaned for years and the brass poles that the banners hang from are tarnished and dull.
Leo shouts out. ‘Woo hoo, woo hoo.’ And the sound doubles back to us in the huge space. It’s another Richard thing, something he always did in tunnels or underpasses or, with enough booze inside him, Tube stations. Did he learn that here too? Leo’s sounds bounce back to us, growing fainter, and I imagine that I hear Richard’s voice in harmony with it.
The afternoon sun is settling and it casts a line of coral light around the point where the shelves meet the glass, almost as if the whole library is on fire, lit from the tips of these delicate pages.
Around the edges of the library there are carved wooden booths, each one containing a desk and one or two chairs. Twenty people could easily sit and work in this room and I can only assume they must have done once. Each booth has an animal head mounted onto a shield above the desk, caribou, elk, a moose stretches its huge antlers over one of them.
Exactly as I assumed, two wide French windows open from the library on to the lawn and, when I push them, they swing open. When we step down the four stone steps we are directly opposite, although still a fair way away from, the golden statues in the lake. They could be skating right at us and they both make direct eye contact with me. It is unnerving.
Outside the sun is still warm on the wide lawns. We zigzag across between light and shade. The majestic trees that I saw from my bedroom window are much more impressive at close quarters and very old. Some are traditional English trees that might, apart from the even spacing and elegant angles, have found their way here by nature – oak, beech, a chestnut that spreads its wide branches over a dappled circle of grass. Others are evidence of Hugo’s travel or maybe those of the generations before him: the vast Chinese monkey puzzle I saw from upstairs, its crooked branches rambling out and upwards, and a fig, prehistoric knobbled leaves bent over to the ground, its tangled branches heavy with unripe figs.