by Hannah Bent
‘They’re not causing any harm,’ I said. ‘Can’t you just leave them be?’
Irene turned to face the large windows overlooking the sea. In that moment, there seemed to be something tired about her expression and the way she placed her long, slender hand to her chest. Her fingers rubbed the pale skin at her collarbone until a little red mark formed.
Wài Pó emerged from the kitchen once more, carrying the last of her seven dishes: abalone and green beans.
‘There she is! My second favourite lady.’ Louis embraced Wài Pó. She quickly ushered him to his seat by Harper’s side. He asked my grandmother if she had cut her hair. ‘You look smart and precious.’
I laughed, and realised it was the first time I had done so in a while.
‘Before I eat my delicious meal, I want to say something and give you these invitations.’ He reached into his suit pocket and pulled out a wad of envelopes. ‘You are all invited to come to my house for ice cream and some cake tomorrow because I am going to give my love a ring and make a proposal so she can be my wife. I made a letter for you all about this. Your names are on the front.’
I took the proffered envelope. It was decorated with sparkling love heart stickers.
A very loaded silence followed.
Wài Pó unwrapped a White Rabbit candy and put it in her mouth.
‘Louis, there will be no proposal.’ Irene handed back her invitation. ‘Remember what they told you at the vocational centre? This is inappropriate behaviour.’
Was I actually hearing this? Just because she’d moved in now, she didn’t have the right to dictate what Harper could and couldn’t do.
I took a breath, trying to calm the surge of adrenaline that swept through my body. ‘Excuse me, Irene, but it’s not your place to tell them if they can be together or not.’
‘Not my place?’ She turned to face me.
Shedoesn’tscareme. Shedoesn’tscareme. Shedoesn’tscareme.
‘It most certainly is my place. Harper is my responsibility now too. Since you’ve been gone a lot has changed. I have been looking after Harper.’
I could hear Wài Pó muttering something under her breath in Chinese.
Since you’ve been gone. I wanted to throw something at the woman. My hands were in fists and my voice came from my throat in a low growl. ‘You aren’t Harper’s mother. You’re not even married to my father.’
I took a step back, realising what I had done. I’d hit Irene where it hurt. It was no secret that she longed for Dad to propose, but we all knew it would never happen.
Irene looked me in the eye. ‘You think you’re her mother?’
‘Stop!’ Harper’s voice broke and she began to cough, sticky and wet. ‘Stop fighting!’ She was struggling to breathe. ‘All that matters is that I love Louis in my heart. Please don’t fight.’
I felt small then, realising I could have dealt with this situation differently. I went to help Harper but Louis was already beside her, softly patting her on the back.
Irene held out her hand. ‘Marlowe,’ she whispered, ‘give me your invitation.’
She wasn’t going to let this go.
‘No.’
‘We can’t encourage them.’
‘They’re adults,’ I told her. ‘It’s not your place to tell them what they can and can’t do.’
Her eyes narrowed. ‘They don’t understand what they are doing. Please don’t complicate the matter.’
I didn’t even know where to start. After all these years, had she not learned anything from Harper at all?
Louis stood and addressed Irene. He lifted his chin and stood tall, ready for battle, with ten times more courage than I could ever muster.
‘I want to tell you something, Irene. I know Harper loves most of all to watch Casablanca on Friday nights and sit with me on the couch holding my hand. She also loves spaghetti and Wài Pó’s egg tarts. Harper is very smart at writing stories. When she is mad, she gets red cheeks and it means I did something wrong, so I have to figure it all out in my head and not do it again. I love this lady and I want to marry her at sunset.’
I couldn’t take my eyes off him. He had such soft features, such a graceful way of speaking. If he were a butterfly, he would be the same as Harper – a yellow Pyrisitia nise. I felt my body go still. If I breathed loudly, I might scare him away.
‘Someone call his mother.’ Irene looked at me, then at Wài Pó. Did she really think we would oblige? When neither of us responded, her heels stabbed the marble floor as she went to the hall.
‘Oh no!’ Harper wailed. ‘Stepmonster has ruined everything!’ She was looking drained and sallow.
Wài Pó rushed to her side and stroked her forehead while Louis spoke calmly to her.
I had to get Dad. As I made my way out of the dining room, I could hear Irene on the phone in the kitchen. Her voice, clipped and stern, was saying, ‘This is totally inappropriate. Your son has disrupted our family dinner. I would expect you to keep a closer eye on him… He’s much lower on the spectrum than Harper is. He needs more care.’
However much Louis’s parents hated these calls, they were smart, educated people whom I was sure would have no problem putting Irene in her place.
‘What do you mean you won’t come to collect him?’ She was shouting now. ‘He’s not an independent young man. He has the intellect of a child!’
I was standing outside the door of Dad’s study now. I wondered if Irene’s raised voice had woken him.
‘Do you realise my stepdaughter is dying?’
I stopped dead in my tracks. That word. It hit me in the gut. I put my hand on the wall to steady myself.
The door to the study was flung open and Dad emerged, his face creased with sleep. ‘What’s happening?’ Startled, confused, not quite alert.
‘You’re too late.’ Stay calm, I told myself. If I said any more, I would surely regret it. I struggled to understand what Dad saw in a woman like Irene. After all these years, why was he still with her?
I followed him to the kitchen and watched as he took the phone from Irene and placed it on the receiver.
‘Enough.’
I wasn’t about to hang around for the ensuing argument. I hurried back to the dining room. Harper was still in her seat, breathing heavily. I took her hand. It was cold. She was sweating.
‘You need to lie down,’ I said.
‘No.’ She shook her head. ‘I’m not leaving my Louis.’
‘Louis can come with you,’ I said. ‘Please, come up to bed.’
She shook her head. Stubborn.
‘I’m tired of people telling me I cannot be with my Louis. You have a boyfriend, Marlowe, and no one tells you that you cannot be with him, right?’
I swallowed hard. Did I deserve to be with Olly when Harper couldn’t be with Louis?
‘It’s not fair,’ Harper continued. ‘Love is the same even if you are a person with Up syndrome or without Up syndrome. Why can’t Stepmonster understand that?’
What could I possibly say to make things better? I would never really know what it was like to have to fight to be understood in this way.
Louis put his palm on her cheek. ‘Don’t worry about Stepmonster. You’re right, she doesn’t understand. But I do.’
I took a step back, realising all Harper was asking for was the right to live her life as any young woman does.
Harper
My heart is skipping and hopping. Flames are burning under my skin. My chest feels stuffy and blocked. Stepmonster’s words are loud in my mind: ‘inappropriate behaviour’, ‘unacceptable’, ‘don’t encourage them’. I want to say, ‘Why can you only see my Down syndrome and not my Up syndrome?’
The moon looks like a circle high in the night, watching me. I let its special light wipe my mind clean.
The doorbell rings. I hear footsteps climbing the stairs, up up up.
My body is lifted and put onto a floating orange bed and carried into an ambulance that is filled with fear and big eyes.
/> They put a needle into my skin and fill my body with healing water and potions from the ocean.
Marlowe
My neck was stiff from having spent the night in an armchair. My eyes felt swollen and heavy. I forced myself to sit up. I hadn’t meant to sleep.
Harper’s heart monitor beeped in a steady rhythm. I watched her chest move up and down with each ragged breath. I looked around the hospital room. I was alone. This was strange, I thought. Dad, Wài Pó and Irene always came to the hospital when Harper was sick.
The events of the night before played over and over again in my mind: the raging fever that had taken hold of Harper’s body, how distant her eyes had looked, caught in delirium. As we waited for the ambulance, Dad had paced while Wài Pó thumbed her prayer beads and whispered healing mantras in a steady drone. Irene was silent, wide-eyed. It felt as if I were in a nightmare; as if I were standing on the edge of an abyss, about to fall.
Harper looked quiet in sleep, her body still. She seemed so small, as if her blankets might swallow her whole. I crawled into her bed and filled the empty space beside her. She smelled like the Kwan Loong oil Wài Pó had rubbed into her back and chest. Her skin felt soft; too soft.
‘Don’t leave me,’ I whispered.
Enough. I was letting myself get carried away again.
I got out of the bed and returned to the chair.
Rain smacked against the window. I walked to it and watched the morning clouds settle over the city below.
‘I’m awake.’ Harper’s voice was faint and croaky.
I rushed to her and took her hand in mine.
‘How are you feeling?’ I asked, adjusting the oxygen tube under her nose.
‘Much better.’ Her cheeks were pricked with colour. ‘It’s a new day and the doctors are fixing my body.’ She smiled. I noticed her lips were chapped. I rummaged through my bag for lip balm but all I could find was a half-empty packet of Skittles and an old tissue.
‘Well good morning, my beautiful lady.’ Louis was standing in the doorway, holding a large bunch of red roses. He crossed the room to stand by Harper’s bed. ‘These are for you, to remind you about happiness and love, from my heart to yours.’
My chest ached. I couldn’t watch them anymore without thinking about how this love might end too soon. I retreated to the window again. Outside a hawk was circling. I wondered what it would be like to be a hunting bird, observing the world from up high, only touching land briefly to feed.
A nurse entered carrying a kidney dish. ‘Hello, Harper, it’s time for your medication.’
‘What are you giving her now?’ I asked. So often doctors and nurses medicated Harper without bothering to explain what they were doing, as if Harper’s disability meant she didn’t require an explanation.
To my surprise, the nurse smiled and introduced herself. ‘I’m Anita.’
‘That’s my big sister, Marlowe,’ Harper told her. ‘She looks after me.’
‘Uh, excuse me, I look after you too,’ Louis said.
‘I always wanted a big sister.’ Anita took a syringe from the dish and showed it to Harper. She said, ‘These are your IV antibiotics, and you’ve also been given morphine for your cough and your breathlessness, and to help the pressure in your heart.’
Anita’s movements were slow and careful as she injected the antibiotic into Harper’s cannula. I felt the tension in my shoulders ease.
Louis ran his fingertips lightly over Harper’s forehead. ‘My brave, brave girl.’
In that moment, the hospital room seemed so large. It was as if some part of me had fled my body and was floating above.
Harper began to sing ‘Hey Jude’. The sound of her voice was so gentle, it made something inside me want to break, so I focused on the illustrated instructions for hygienic handwashing above the nearby sink. It was a six-step process.
The momentary calm was broken by the sound of Irene’s voice in the corridor outside declaring that she was here to see Harper Eve. She strode into the room and stood at the foot of Harper’s bed. The scent of Chanel No. 5 was overpowering.
‘Louis, what are you doing here?’ she demanded. ‘I asked your mother to call in advance next time you wanted to visit.’
I opened my mouth to argue, but Harper beat me to it.
‘He’s here because I want him here,’ Harper said loudly. Then she began to cough.
Anita immediately reached for the oxygen.
‘Where is my dad?’ Harper asked through the plastic mask.
‘He’s got some urgent business to handle. He’ll be here soon,’ Irene replied.
‘What could possibly be so urgent after what happened to Harper last night?’
‘I’ll explain later,’ she whispered.
‘What about Wài Pó?’ I asked. ‘Where’s she?’
‘She’ll be here soon.’
Clearly, something was going on, but I decided not to press the matter in front of Harper.
‘To be honest,’ Harper said, her voice muffled under the mask, ‘I am a little upset that you are here, Irene. You make my heart jumpy and sometimes you can be a bit rude.’
I found myself suppressing a smile. In the years that I had been in London, it seemed that my sister had found her voice.
I watched as Irene, her cheeks flushed, brushed the creases on her skirt as if she were trying to flick Harper’s retort away like a speck of dust on one of her designer gowns.
She grabbed the bunch of roses from Harper’s bed and ordered me to put them elsewhere. But Louis got to the flowers before I could and put them safely on her bedside table.
‘Irene.’ Louis moved into her line of sight. ‘I want to tell you that I forgive you for last night after you made Harper and me upset. I would like you to know that I love her with all my heart and just want her to be my wife and –’
Irene held her hand in the air. ‘Enough, Louis.’
Here we go again, I thought.
‘But –’
‘Do you know why I am not going to accept this engagement?’
My breath quickened. ‘Irene, please, we don’t need to go through this again,’ I said quickly.
Ignoring me, she said, ‘Harper is dying.’
I gasped. The baldness of the declaration was brutal.
The room was quiet, but for the faint ringing in my ears.
‘Ex-ex-excuse me?’ Louis’s face was pale. He looked like he might be sick.
Even Anita had stopped what she was doing and looked up, aghast.
‘Irene, you’ve gone too far.’ I went to stand beside Louis. How stupid was she? After last night, could she not see how much she was hurting them? I noticed that my hands and feet were pulsing. It made me want to run.
Undeterred, Irene continued to address Louis. ‘I know this is hard for you to hear, but it is time someone told you.’ She took a lace handkerchief out of her bag and wiped a bead of sweat from the corner of her forehead. ‘I didn’t want to have to be the one to tell you, but you deserve to know.’
She wasn’t about to… No, she wouldn’t…
‘Harper needs a new heart to get better. The doctors can’t give her one, so now she only has a few months left to live.’
‘Irene, that’s enough!’ I held a hand out as if to ward her off.
‘You cannot marry Harper, Louis.’
Louis turned his back on Irene. Harper began to sob. Trying to keep my voice steady, I said, ‘I think you should leave.’
She held my gaze until the muscles above her right eyebrow began to twitch. ‘I only have Harper’s best interests at heart,’ she said before striding out of the room, chin held high.
Anita removed the last syringe from Harper’s cannula and reattached her IV. She then asked Louis and me to leave. Numbers flashed on the screen above her head. I felt like I was falling again.
Louis gulped down a can of Diet Coke, then let out a hearty burp. He guzzled a second can before sitting beside me in the waiting room.
‘That’s a lot o
f Coke, Louis.’
He looked up at me, face sunken. ‘I don’t have a problem with sweet things. Sometimes my mum says I do, but I really don’t.’ He shook the empty can in the air. ‘You see, this is a diet drink with less sugar. It is healthy.’ He sighed and bowed his head.
I told him it was okay and put my arm around his shoulder. Together we watched the movements of the hospital ward and I found myself focusing on the patients fit enough to walk. They moved at a slow pace, pushing their IV drips ahead of them. A young woman with yellow slippers walked towards us. I tried to visualise Harper in her place, fit enough to walk, but all that came to mind was Mum when she was having chemo. She would shuffle around her hospital ward, orange bandana concealing her patchy scalp, eyes focused in a kind of deep concentration.
‘Is Irene right?’ Louis asked.
I didn’t know how to answer that question. I was still struggling to find a way to describe Harper’s condition when Louis sighed. ‘It’s okay,’ he said. ‘I can see the sadness in your eyes and on your mouth. Harper is…’ His bottom lip quivered.
I told him not to lose hope. ‘I’ll find a way to help her,’ I told him.
‘Will you be able to get Harper a new heart?’
When I didn’t reply, he stared at me for a few long seconds. I couldn’t read his expression. Abruptly, he stood and looked at his watch.
‘I am speedy,’ he said, ‘and I have an idea. See you soon.’
He pressed the start button on one of his digital watches and raced towards the elevator. When that didn’t come in time, he headed for the stairs.
‘Louis, wait!’ I called.
‘No time to wait!’ came his voice from the stairwell.
I was too tired to follow, so I leaned my head back against the wall then exhaled heavily and closed my eyes.
I pounded the large oak door with my fists, calling for my mother.
The door opened and water surged out, sweeping me off my feet. My arms were flailing, legs kicking, as I tried desperately to swim to the surface for a breath.
I cried for help. Words emerged from my mouth in bubbles.
