Harry continued to hold my hand and stare into my eyes. Inside my chest there were little flutterings and leaps and for once it was nothing to do with excess mucus production or the beginnings of some vile infection.
‘So?’ he said. ‘We’ve all got to die sometime, right? Any of us could die tomorrow. I reckon it’s no big deal.’
I continued to stare at him in amazement. I thought that most boys wouldn’t want a girlfriend who spends much of her free time coughing, puking, fainting, being hooked up to an antibiotic drip or puffing on an inhaler, but then again Harry seems to not be most boys, in the same way that I am not most girls.
‘Anyway,’ he said. ‘You make awesome cakes. And I kind of like to eat a lot of cake. So I reckon we ought to go out sometime, yeah?’
I looked into his dark eyes and at his brown floppy hair and from that moment on I was smitten.
‘I will be your Cake Tester,’ he said as he left. ‘You can try out all your recipes on me.’
That did it for me. We’ve been together ever since.
***
I’m sitting in the local park with Harry and a big wicker basket that I’ve stolen from Mum.
It’s a beautiful day. Kids are playing on the swings and mothers are standing around in little huddles gossiping or eating ice creams.
I’m feeling a bit deflated, even though it’s great being with Harry on a Sunday with the sun beaming down and the whole day ahead of us.
Mum isn’t budging on the whole London thing. She took me to the GP the day after my collapse in the clothes shop and he said that it might be that my lung function has decreased. I won’t know for sure until my annual review, but Mum has been tasked with forcing me to rest, take extra medication and have early nights.
That means that I’ve had to cut down playing matches with the football team at school, at least for a while. It’s a pain, because when you’ve got Cystic Fibrosis it’s really important to take loads of exercise to keep your lungs working as well as they can, but I’m getting too out of breath to run around the pitch at the moment. It also means that I’ve stopped revising for my exams quite as hard as I had been. I still do the work but I go to bed earlier or else Mum starts yelling swear words up the stairs.
Mum is very fond of Harry. I heard her whispering to him about my current state of health as we left the house, but I pretended not to notice. It’s kind of embarrassing – Harry can see how well I am just by looking at me, so there’s no need for Mum to be all extra anxious and over-motherly, but I don’t reckon I’ll ever stop her.
‘Sausage roll?’ I say, offering Harry the first of about twenty plastic boxes from Mum’s picnic hamper.
Harry’s eyes light up. He’s not at all overweight or anything but he does love food. Most of it gets burned off during rugby tournaments or by cycling. Harry is very into his sports.
‘Made by you?’ he says. ‘Stupid question. Of course they are made by you.’
He sinks his teeth into the warm, greasy puff pastry and closes his eyes for a moment.
‘Awesome,’ he says. ‘Best I’ve ever had.’
I kind of know he’s not lying, either. I’ve perfected my sausage rolls over the last year by using top-quality flour and free-range pork mince bought from the local butcher out of my pocket money from Mum. I reckon I’ve achieved just the right balance between moist, savoury meat and crisp, flaky pastry. I’ve brought two little jars of yellow-brown French mustard from a market I went to with Mum last time we were on holiday. Harry spoons the mustard all over another sausage roll and bites into it with his usual enthusiasm.
I’m less hungry today. My chest is tight and the stronger antibiotics that the GP has just put me onto to avoid another chest infection make me feel a bit sick. I pass up on the sausage rolls and fiddle about looking for cake instead. Somehow it’s always easier to eat sweet stuff when I’m feeling ill.
I snap open the lid and peer inside. Four perfect chocolate cupcakes nestle up like newborn kittens in a box, waiting to be chosen. The chocolate frosting on top glistens in the sun.
I select the special one I’ve made for Harry and pass it over.
‘Aw,’ he says. ‘That’s sweet. Cheers, Mel.’
Harry always calls me Mel. He reckons ‘Amelie’ isn’t really a name that suits me and he may well be right. He also says it reminds him of a really long, dull French film that his mother forced him to watch once.
‘It was all slow motion doors swinging back and forth,’ he said. ‘Bo-ring.’
He’s picking the tiny red heart from the top of his cupcake and popping it in his mouth. I had the heart idea this morning when I looked in my special cupboard and found a forgotten roll of fondant icing. Fondant icing is kind of cheating and I prefer to make my own, but it’s useful to colour and make into shapes, so that’s what I did.
I made Mum one of the special heart cakes as well and left it in the kitchen for her to find. Even though we’re kind of not speaking over all this London stress, I still reckon that she deserves a cake.
Mum has gone through a lot over the course of the last thirteen years.
I suppose it can’t be easy having a child with my illness to look after, even though I’m not really going to be a child for much longer.
It’s why she and Dad stayed on good terms, too. They decided that it wouldn’t do me any good to live between two warring, battle-scarred and bitter parents, so they made a pact to stay friends for my sake and they’ve pretty much managed it ever since.
‘Could I have another one?’ Harry is saying. He’s gazing into the cake box. ‘These are my favourites, deffo.’
I smile and pass it over. Then I force down another one myself. Got to keep the calories going in.
If I keep eating and get stronger again, maybe Mum will let me go to London and take part in the competition.
‘I hope so,’ says Harry. I didn’t realise I’d spoken my last sentence out loud. ‘I know how much you want to get there. I’ll come with, if you like.’
I smile and let him take my hand, but my eyes are focused on the dark grey storm cloud threatening to pass over the sun and ruin our lazy picnic.
I don’t feel so good today.
What if my lung function goes downhill?
What if I end up in hospital again instead of taking part in the competition?
I shudder.
Sometimes having Cystic Fibrosis seems a bit like someone’s having a bad joke with me.
Most of the time I try to stay positive. Mum’s always made a big deal out of telling me that I’m special and asking me who wants to be like everybody else anyway.
‘You’re unique,’ she says. ‘And you have unique creative talents, too.’
Yeah. But there’s not much point having the talents if I can’t do anything about them, is there?
For the first time in ages, I wish that I was normal.
Like Gemma, like Harry.
Just like everybody else.
Best Ever Sausage Rolls
To make about 25 of these gorgeous mouthfuls you will need:
1 tablespoon butter
1 red onion, peeled and finely sliced
A sprig of fresh sage leaves or another green herb like parsley or thyme
A handful of breadcrumbs
6 good pork sausages
300g (10 ½ oz) of defrosted puff pastry. (It’s pretty hard work making your own puff pastry. The stuff you can buy in the supermarket tastes just as good and is much easier to use. You can get this in the freezer cabinets in the supermarket.)
1 egg
A little bit of milk
So you need to heat the oven up to the temperature it says on the puff pastry packet. Then melt the butter in a saucepan and add the sliced onions. Cook them for about 20 minutes on a low heat until they are all nice and soft. Add in the sage leaves and cook for a couple of minutes more, then spread everything out on a plate to cool down.
Then take a sharp knife and carefully slit open the sausages so th
at you can pop the meat out into a bowl. Add the sage and onion mixture and the breadcrumbs and then get your hands into the bowl and mix it all together. This will either feel really nice or horribly cold and squidgy, depending on whether you like to mess around with meat or not. I do.
Next you need to roll out the puff pastry into a long rectangle about as thick as a pound coin and then cut that rectangle lengthways into two long, thin rectangles. Pick up a handful of the squidgy meat mix and roll it into a long, thin sausage shape. Put it in the middle of one of your rectangles of pastry. Do the same with the other one. Then mix the egg and milk and brush some of this onto the edges of the pastry.
Now for the fun bit! Fold one side of the pastry over the meat so that the filling is wrapped inside and pinch the edges of the pastry to seal it all up. Do the same with the other rectangle of pastry.
Now all you need to do is cut the long rolls into little sausage-roll shapes and arrange them on a baking tray. Brush the rest of the egg and milk mixture over the top to make them nice and shiny in the oven and put them in the oven for about 25 minutes or until they come out all puffed up, sizzling and golden. Serve the first batch hot with a dipping sauce of mustard or tomato ketchup. You will be in heaven.
(Note: my mother steals these during the night when she’s hungry. You might wish to invest in a lockable container.)
Chapter Five
I have two days off school because I’m feeling really rough.
Mum isn’t too impressed when I drag myself into Karim’s shop to do two afternoon shifts, but the thing is I need the ingredients to get practising for when I go to London.
‘Oh, goodness me,’ says Karim as I lean on a shelf full of bread to get my breath after a coughing fit. ‘Little baking girl doesn’t sound too good today. Maybe you should take rest.’
I straighten up and get on with stacking shelves.
‘Little baking girl is fine,’ I say, even though one look at my reflection confirms that I’m not, really. My face is all white and strained-looking and my lips look slightly blue. This lack of oxygen thing is a real nightmare at times. The slightest bit of exertion and I find myself having to sit down for a rest like a sad old lady. Mum’s been given a canister of oxygen from the hospital and I plug it in at bedtime. It means that I have plastic tubes put in my nostrils and then the oxygen gets into my body and makes me feel a bit better by morning. But the last thing I want is to have to travel around attached to it, even though Mum has found out that there’s a smaller version of the canister which I could carry.
When it’s bad, Cystic Fibrosis can be REALLY bad. Some days I struggle to take a proper breath and even to climb the stairs. When it’s good, I can almost convince myself that there’s nothing wrong with me at all.
Almost.
Karim watches me with concern all afternoon. He’s got a hotline straight to my mother’s mobile which is really embarrassing, but she insisted on it as a condition of me being allowed in to work.
‘I think you should finish early,’ he says. ‘I still pay you the same, OK?’
I know when I’m beaten. I can hardly stand up straight and all I can think about is getting home and lying on the sofa with a bucket and an inhaler. I take a few sneaky puffs on it now, with my back to Karim. The drugs loosen the tightness in my airways a little and I sigh with relief. One more big cough and I feel slightly better.
‘OK,’ I say to Karim. ‘Thanks. Could I take butter and eggs and white flour today?’
Karim gestures at the shelves of his shop, arms out wide.
‘Take whatever you want, little baking girl,’ he says. I reckon he still saves money by not paying me an actual wage, so I don’t feel too guilty about loading up my bag with several packets of butter. I add some free-range eggs and flour. I’m planning to buy cheese at the special cheese shop in town. Karim does sell cheese but it’s hard, square and in packets and tends to be cheddar. I’m looking for something a bit more special, like a nice gruyere, so that I can knock up a fattening batch of cheese straws to put in my school lunch box for the next few days.
That’s if I ever get back to school.
The doctors are threatening to keep me in hospital for tests and observation, unless my lung function stabilises over the next few days and Mum is in full agreement with them.
There’s less than a month until I am due to attend Britain’s Best Teen Baker of the Year.
And there’s something else on the horizon.
It’s something I try not to think about but every time my lungs get worse it takes a sneaky step closer and looks over my shoulder.
If things don’t get better I’m going to have to have a major operation to save my life.
It’s called a double lung transplant. It means that I would have somebody else’s lungs put into my body and my own diseased ones taken out.
Gross.
***
When I get home I lie on the sofa and flick the TV on but I can’t concentrate.
There’s nothing but cookery programmes on and although usually I love watching other people cook and come up with ideas, today I just feel resentful that I’m not in the kitchen whipping up my own recipes.
The thought of standing at the cooker makes me feel exhausted. I stay on the sofa for the rest of the evening and I can’t face climbing upstairs to bed, so Mum brings my duvet downstairs and puts it on top of me instead, but even then I can’t sleep.
I lie awake watching the moon outside and devising new recipes in my head. Then I just lie there, thinking about my life and where it’s going, or not going.
Sometimes people at school ask me what it’s like living with an illness that’s never going to get any better. I don’t mind them asking, because I think that they truly do want to know the answer. It’s hard for somebody who is well and has a healthy digestive system and strong, pumping lungs to understand what it’s like to not have these things right from the very start of life.
I tell them that I feel the same things as everybody else – happiness, sadness, pain (although maybe more of that than your average kid), excitement, boredom, hunger (on a good day). On a day-to-day basis I guess I pretty much feel the same things in the same way as the other teenagers in my class.
‘But what’s it like not knowing if you’re going to reach adulthood?’ some people say. ‘What about making plans and stuff? And university.’
I look them in the eye.
‘Most of the kids in my class don’t have a clue what they want to do when they leave school,’ I say. ‘And actually, I do know. I want to bake.’
I can see by their doubtful expressions that they don’t believe this, but I need to sound strong and positive about everything or else I’d curl up under my duvet and never come out again.
I sigh and sit up. It’s obviously going to be one of those nights where thoughts whirl around in my head and stop me from sleeping.
The thought of whirling leads me to think about Viennese whirls. I scribble a few ideas down onto a pad. Classic strawberry jam-filled whirls, I reckon. Made with really good flour and country butter, home-made jam from my cupboard and dusted with icing sugar. Or maybe I might experiment with chocolate whirls instead, sandwiched together with smooth, sweet chocolate buttercream and dipped in hot dark melting chocolate so that half the biscuit is plain and half dipped.
Then I remember my blog. I reach under the sofa and slide out my laptop to log on.
There are another six replies to my first posting!
Five of them are from people offering biscuit recipes. The sixth is from some girl wishing me good luck with the competition.
I scan down the recipes and my mind starts to buzz with chocolate drops and vanilla essence and great luscious big chunks of fudge.
I feel all inspired so I click on the menu bar on my blog and select ‘new post’. Then I tuck my legs up under my duvet and balance the laptop on my knees. This is what I write:
Hi, it’s Amelie here – the girl who bakes. Wow – I’m really
amazed to come on and find these brilliant biscuit recipes. I promise I will try them all out when I’ve got the time and energy. That’s not supposed to sound wet. The thing is, I kind of suffer from an illness and it saps a lot of my strength. That’s why I bake – because I am supposed to try and fatten myself up as much as possible in order to stay alive. Plus I just love baking – it’s my favourite thing in life, other than Harry (boyfriend) and my BF Gemma. Anyway, you know I wrote last time about that competition in London? The one I’ve been selected for? The thing is – I’m too sick to go. Or at least my Mum reckons I am. So I’m drowning not just in mucus (sorry, TMI!) but in disappointment at the moment. But anyway, please carry on sending me your recipes. Any good, sticky cake recipes with a twist would be good. Have any of you ever attempted a chocolate fondant? If not, go and look it up and try to make it. Post a photo online if you can. It’s kind of a challenge to get the middle bit runny and not too firm. So I’m signing off now, but I’ll post an update of what’s happening in my ever-changing life soon. Amelie x
For the first time all week I feel the prick of something resembling appetite.
I lurch up and stagger into the kitchen.
The clank of pans and me banging into cupboards brings Mum downstairs all prepared to be cross, but when she sees me stirring a pan of rich scrambled eggs and frying up crispy bacon to scatter over the top, she grabs a plate and sits down.
‘Ages since I had a midnight snack,’ she says. ‘It will sit on my hips all night, but who cares?’
She’s grinning. I can see that she’s relieved that I’m starting to want to eat savoury stuff again. It’s usually a good sign.
‘Mum?’ I say, spooning the creamy eggs onto her plate and sprinkling the salty shreds of bacon on top. I grind black pepper onto my egg before I add the bacon. Then I put a strong pot of tea in the middle of the table and pour full-fat milk into cups. ‘If I get better this week, could we talk about London again?’
Mum puts down her fork.
The Baking Life of Amelie Day Page 3