Harper

Today is a Tuesday, which means it is ‘popcorn and romantic movie night’, but my dad says I cannot go because I am too sick. To be honest, I’m a little upset about this. I am in a new hospital, and the doctors are very friendly, but I don’t really feel okay about missing tonight. I don’t like skipping things that are written in my diary. But I am practising some deep breathing skills that Wài Pó has taught me. This is helping my mind to relax. Another thing helping me to relax is that I have Louis, the love of my heart, by my side.

He is always so smartly dressed. Today he is wearing a navy suit with a pink shirt. He has a few watches on his arm because he loves telling the time, and when he looks down at them, his syrupy hair falls over his face. Even though he needs a haircut, he is one of the most handsome men I have ever met.

He brought me a gift today: a packet of coloured glass beads which he is helping me make into a necklace. As we do this, we are half listening to Dad and Wài Pó, who are talking in hushed voices to the doctors outside my bed curtain.

‘You have a beautiful neck,’ Louis says, ‘and these beads will make you look like a princess.’

He tries so hard to put the thread into the hole of each bead, but keeps missing.

In – out – miss, in – out – miss. In – almost in – miss.

I wish I could help him but I can’t because I have too many wires and drips and things stuck to me. Louis frowns as he threads, then sighs loudly and dumps his hands onto his lap, shaking his head. He missed another bead. Poor Louis. He is not enjoying this. I will ask Wài Pó to finish the necklace for him.

I can hear the hard sound of Irene’s high heels against the floor as she comes into the room. She’s always late.

‘Hello, I’m Irene. It’s a pleasure to meet you.’ Her accent is always so posh when she is talking to new people. I hear the doctor say hello back. He doesn’t know yet that she’s a stepmonster.

They start talking again for a while at a low mumble, mumble, mumble, then Dad’s voice becomes louder.

‘We’ve already been to another hospital!’

Louis, fingering the beads on his lap, moves his head to the side and listens. He is frowning.

‘Why can’t you help us?’ Dad asks.

Louis looks at me. ‘Why do you have to keep changing hospitals?’ That is a good question and I try to think in my mind for a good answer.

‘Dad said the doctors at the last hospital were useless and something called dis-crim-in-a-tory. That’s why.’

‘What does dis-crim-in-a-tory mean?’

Last night, I had used a dictionary to look this word up. Discrimination: Showing an unfair or prejudicial distinction between different categories of people or things, especially on the grounds of race, age or sex. That was a lot of new information in my head that I didn’t understand. I needed more time to figure it out with the help of an internet search engine and my speech therapist, Mrs Green. But I didn’t tell Louis this. I told him it meant anger towards doctors. I knew this because when Dad spoke, I could tell he was growing a fire in his heart. He spat his words out and I knew there would be red in his cheeks. I thought he was being a bit unfair. Doctors always try to do their best. They always have with me, ever since I was small.

Suddenly, Dad’s voice grew even louder. ‘I don’t understand why you won’t put her on the transplant list.’

Transplant. I have not looked up this word in the dictionary yet but they said it in the last hospital too.

I cannot hear what the doctors are saying back to my dad; their voices are too small and quiet.

‘If my daughter didn’t have Down syndrome, I’m sure you would be giving her the chance she needs to survive.’

‘Um, excuse me, it’s called Up syndrome.’ I speak in a loud way but no one pays attention.

‘This is utter discrimination.’

That word again. I can feel Dad’s heat. It is all over the room, making me feel breathless.

‘James, please calm down.’ My stepmonster’s voice is cool, so cool.

Why does she get to speak and be listened to, but I don’t? They are always talking about me, but I am never included.

‘Hello!’ I call from my side of the curtain. ‘Hello!’

Louis joins in. ‘Hello, everyone, Harper is calling you.’

‘Keep your voice down,’ I hear Stepmonster say to my dad. ‘She’ll only get sicker if she’s distressed.’

Wài Pó slides through the gap in the curtain. She takes my hand and pats it. ‘No need to worry, Míng Huà. The doctors are trying to make you better.’ She looks sideways with her eyes at the gap in the curtain. Everyone’s voices are quiet again.

‘I don’t like this talking behind my back one bit,’ I tell Wài Pó. She takes a hawthorn candy from her pocket and offers it to me.

‘Not hungry.’

She goes to Louis and takes the beads from his lap. ‘So beautiful!’ She sits beside him and starts threading. In and out, Wài Pó’s quick fingers move between each bead. And then she starts singing; it is a Chinese song my mum used to sing for me. In my heart and in my mind I say, ‘Hello, Mum.’ I feel her with me.

We stay like this together – invisible Mum, me, Louis and Wài Pó – until the necklace is finished. Wài Pó holds it up to the light in the ceiling. It shines in the colours yellow, red, orange, green, purple and blue. This is a beautiful thing.

Dad pulls open the curtain so hard it makes a sharp scratching noise against the railings. His face is red, just like I knew it would be. Irene is behind him, searching for something in her bag. Her face isn’t red like Dad’s, but her red lips, red nails and red dress pop against the white walls of the hospital. She pulls out her car keys.

‘I’ll meet you in the car park,’ she tells Dad, then goes clip clop clip clop down the corridor.

Dad faces me. ‘Darling, we need to get another opinion from a different doctor again.’

I don’t understand what this means.

‘We just need to find you a doctor who will help. Don’t worry – I’m sure there is one out there.’

I thought the doctors were helping me. But before I can say this, he is already talking to Wài Pó, telling her to pack up my things.

‘Irene is getting the car. I’m going to settle the bill.’

He’s off in a flash, stamping his feet as he goes.

A nurse enters. She walks over to me and takes off all the coloured wires on my chest. These wires measure my hum in a way that doctors can understand. I ask her why she is removing the wires. She says I am going home. This is confusing, because my chest is still sore, I am still out of breath, I have a terrible cough and my body is cold and puffy.

‘Don’t the doctors need to wait until I am better?’ I ask. That is what usually happens. The doctors don’t send me home until I am better and can walk without feeling like I am losing air.

The nurse looks away and tells me not to worry. Then Wài Pó talks to me in Chinese and tells me not to worry. But instead, I start to feel the panic in my chest.

‘Don’t worry,’ she repeats. ‘We will find a doctor to help you.’ She is speaking in the English language now so Louis can understand and be calm in his heart too. But I think that is what Dad said, too, and it still doesn’t make sense. I study her face for more clues but she won’t look me in the eye.

‘Louis.’ I reach my hand out to have him hold it. ‘I don’t understand.’ Louis hops from side to side, which means he is nervous. I don’t like it when he is nervous. It is not good if both of us feel bad, though, so I take a deep breath and say, ‘Will you put my beautiful necklace on me?’

He stops moving and smiles. ‘Of course, my beauty. Of course I will.’

To be honest, I like it better at home than in the hospital, because even though my Marlowe is not with us in our big white house, I still feel her here.

Every day, when I walk past her room, I say, ‘Hello to you, my Marlowe.’ I wonder if she can hear me from far away. I think in my mind about the letter I wrote her, and all the other ones I have written since she has been gone.

‘Writing a message to someone by hand is a special thing.’ That’s what Dad says and I agree. He also writes letters, though I don’t think he sends them. But that’s okay.

I think to myself that when you open a letter that has been made by hand with a pen and paper, you can feel and touch the mark of another person. You can see their moods in the shape of their words, and sometimes you can find their smell caught between the ink and the paper.

Oh, I do wish my Marlowe would come home soon.

I am back in my bedroom with its happy yellow walls. I am not thinking about missing popcorn and romantic movie night, or that Louis went without me. I know he didn’t mean to make me feel sad, it’s just that he finds it even harder than I do not to stick to the schedules that are written in our diaries. And anyway, I feel okay because I am doing something special. I am sitting with all my things that are in the in-between. I am trying to help them find their way again. But you can’t force them; all you can do is try your best. This is something Marlowe did in her room when we were small. She was good at saving things.

By my window, I have the calamansi plant that forgot how to give fruit. It became sick and black in the roots. There is also the gecko that lost its tail by accident of the French doors closing on it. Last of all is the little duckling. I found her by the Silverstrand Mart in Clearwater Bay. The duckling must have lost her mother, so I put her in my pocket and gave warm love. Then I made a shoebox bed with some dried flowers. The first day this little duckling did not move much because I forgot to feed her and also because I think she may have missed her mum. But now this little duckling has a good, strong hum and is quack quack quacking away.

Today I give the duckling a name. It is Méi Lì. This is the same name my Wài Pó has. I sing to Méi Lì, just like when I was in the hospital and Wài Pó sang for me.