Serenade for a Small Family

by Ingrid Laguna

  I spun away from them and lifted my hand to my face,

  bringing Louise’s hand up too. ‘No!’ Adrenalin rushed and

  my stomach heaved; I dropped to my knees. What was

  this? I had thought Leo was going to be okay. We were

  taking Leo home—beautiful Leo, Leo with attitude, Leo’s

  soft skin, Mamma’s boy, beloved darling Leo. This could

  not be happening.

  ‘You can stay there,’ said Louise. ‘It’s okay.’ A green

  plastic bowl appeared on the floor in front of me.

  ‘Maybe they should go to another room,’ said a voice. We

  were led to the Quiet Room, where we sat on the couch,

  tightly holding each other’s hands. My mouth was dry.

  The doctor who had been with Leo came in. ‘Leo’s

  heart has failed and been brought back three times,’ he

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  said. Everything was moving fast and slow. ‘He’s been

  deteriorating overnight . . . It could go either way from

  here. Peter is on his way in.’ He left.

  We waited. We barely moved a muscle, and we didn’t

  look at each other. Peter came in and sat down. ‘It’s the

  NEC, the gastrointestinal disease . . . An x-ray is showing

  that most of his bowel is now missing . . . He’s not going

  to make it.’

  Benny and I wrapped our arms around each other,

  twisted faces buried, tears bucketing. Peter spoke again,

  clearly and deliberately. ‘The best thing for Leo is to be

  taken off the ventilator and held in your arms. His little

  heart is almost gone . . . we will make him comfortable.’

  Oh quickly—give him to me!

  ‘You’re going to have to be strong. Are you ready for

  this?’ Peter asked.

  ‘Yes . . . yes.’ Hurry!

  When midwife Sara brought Leo to us minutes later,

  her eyes were wet and red-rimmed behind her glasses. As

  Benny and I reached out to take him, a fresh tear slid down

  her cheek.

  Holding Leo without tubes or leads or tape on his face

  for the first time was beautiful. Oh heavenly to hold you,

  darling darling boy. We are here!

  Peter came back in and leant over him to listen for a

  heartbeat. ‘He is nearly gone,’ he said gently. We huddled

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  over Leo and held onto each other and bawled and said his

  name over and over, passing him carefully back and forth,

  relieved to have him with us.

  Mum came in. She held me as I buried my face in her neck

  and wailed. She sat down and held Leo and rocked him. We

  stayed with him until his skin became cool to touch and the

  colour left his face and body, and he wasn’t there any more.

  I didn’t know how I would ever walk out of that room.

  Someone brought us cups of tea. Someone else brought in

  a bath filled with warm soapy water and clean baby clothes.

  Benny undressed Leo, then held him in the bath with one

  hand, gently scooping water over him with the other. I lay

  with my head on the arm of the couch, staring at the wall.

  We took him to say goodbye to Jordan. Ben held Leo

  as we stood awkwardly beside Jordan’s cot.

  ‘Do you want to walk him to the hospital mortuary along

  with Justine, or do you want her to go on her own?’ asked

  Sara when we returned to The Quiet Room. ‘It’s up to you.’

  ‘We’ll take him,’ said Benny.

  I turned to Mum: ‘Will you come?’

  ‘Yes, darling.’

  Sara knelt down to lay Leo’s body, wrapped in a blanket,

  in a bag. She started to close the zip.

  ‘Can you leave it open?’ I asked, panicked.

  ‘Yes . . . of course.’

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  Ben carried the bag. We followed Justine down corridors,

  turning left and right and left, then down in a lift. As we

  bumped downwards in that cold steel lift, I was struck by

  a bad thought.

  I turned to Mum. ‘Will we ever smile again?’ I asked

  her. ‘I mean—feel happy?’ I really did not know.

  ‘Yes, my darling.’ I couldn’t imagine it.

  When the doors slid open, we followed Justine out into

  an underground car park. Mum, Benny and I looked at each

  other, perplexed. ‘Where are we going?’ I asked.

  Justine had a hardness about her, but I’d seen her work

  and felt safe when she’d looked after my babies. She had

  cropped dark hair and a muscly body. She turned to me.

  ‘It’s a shortcut. We’re nearly there.’

  We crossed the car park and entered a cool, fluorescent-

  lit room, where we were greeted by a messy-haired girl.

  She looked like a uni student, and she didn’t know what

  to say. Benny stood holding the bag holding Leo, and I

  hid behind him with my face against his back, sobbing.

  We stood there—me crying, Benny holding the bag, Mum

  looking at the girl.

  ‘Are you snotting on my t-shirt?’ asked Benny.

  The thick, sad air was momentarily broken and the three

  of us erupted, briefly, in a laugh.

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  We held a service in the hospital chapel to farewell Leo

  and celebrate his life. That small modest room with its

  stained glass windows, in the hospital where Leo had lived,

  turned out to be just right. Setting up the room, I held the

  last singlet Leo wore over my nose and mouth so I could

  breathe in his sweet baby smell, before laying it on a table

  among candles and photos. In the early afternoon, doctors

  and midwives, as well as our siblings and mums and dads,

  shuff led softly in and stood shoulder to shoulder to say

  goodbye to Leo, or maybe they came to prop up Benny

  and me.

  ‘The value of a life is not measured by its length . . .’

  began Ryan, the chaplain, a kind and genuine old man.

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  ‘Leo was with us for just six weeks but, looking around

  this room, it is clear to see that he made a big impact on

  many people.’ Midwife Vera winked at me reassuringly

  from across the room. ‘Leo was a little fighter,’ continued

  Ryan. ‘Leo the Lion.’ There was a murmur of appreciation

  through the room.

  I’ve performed hundreds of times to some pretty big

  crowds, but on that day, when it was my turn to speak, I

  looked at the blur of my speech on the page and choked up.

  After a few awkward beats of silence, Benny spoke softly

  into my ear: ‘Do you want me to read it, darling?’ I nodded.

  He squeezed my hand and bravely read my words while I

  dipped my head and watched my tears fall onto the carpet.

  In hindsight, that speech seems corny, and I wish I had

  the chance to rewrite it. Sometimes I wish I had just read

  out the story of Gerald the Giraffe—about a giraffe who

  couldn’t dance until he found the right music—a story that

  Benny and I liked to read to the boys.

  After the speeches, a small boy, the son of another parent

  we had befriended, came up to me. ‘You don’t need to

&nb
sp; worry,’ he said. I crouched down to him. ‘My Nanna Clara

  is with Leo and she will look after him.’

  ‘Thanks, Marcus,’ I said. ‘I feel better now.’

  Cards, letters and flowers filled the apartment’s benchtops

  and windowsills until the space closed in and we couldn’t

  take time out if we tried. Each time I walked in the door,

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  the sight of the cards and the sweet smell of the flowers

  reminded me of the big achey hole in my heart and the

  bottomless missing feeling I was struggling to get along with.

  ‘Next time I want to make someone feel better I’m going

  to send movie tickets and moisturiser instead of flowers,’

  I said to Benny. ‘I mean, this is our life. We’ve got to keep

  being normal somehow, stay light.’

  Benny sat in front of his computer, his shoulders slumped.

  He had dark hoops under his eyes. I massaged his neck

  until he groaned with gratitude and pressed his weight

  into my hands.

  ‘We’ve got to keep putting one foot in front of the

  other, you know?’ I continued. ‘I appreciate the gesture . . .

  the empathy. But we can’t just sit in the dark with flowers

  and cry. We’ve got to get out of bed and do things and be

  okay . . . to keep functioning somehow.’

  ‘Hmm,’ said Benny, distracted. ‘I don’t know what

  people should send.’

  ‘Chocolate maybe.’

  ‘Maybe.’

  If anyone was going to make a decision about whether

  or not to withdraw your life support, you’d be lucky if it

  were Ben. He’s all about doing the right thing for the right

  reasons—deeply thoughtful and loaded with integrity. (In all

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  the years I’ve known him, he’s taken maybe one sick day,

  despite my words of encouragement. Sometimes I think he

  should lighten up—lower the bar and make a bit of mess

  like the rest of us.)

  We sat in the cafeteria, weary.

  ‘I’m writing a list,’ I said, holding a pen over my note-

  book. ‘A list of what makes life worth living.’ Ben looked

  at me warily, non-committal. We had a meeting with

  Peter scheduled for that afternoon, to discuss Jordan’s MRI

  results, and I was preparing. I read from the notes on the

  page in front of me: ‘The ability to get among things and

  people, a sense of place.’ A barely discernible nod from Ben.

  ‘Not in pain, comfortable, the ability to laugh.’ A hugely

  overweight woman with a morose expression slogged her

  way towards the bains-marie of hot chips and lasagne at

  the cafeteria counter, and I scribbled my thoughts: To like

  yourself, to be comfortable in your own skin.

  I read on: ‘To have a good life, you need to be loved to

  pieces by at least one person, preferably many . . . And you

  need family.’ I looked out the window and back at Ben.

  ‘They’re bound to drive you crazy but you’ve still got to

  have ’em.’ I was starting to get used to the taste of Adelaide’s

  awful metallic water—I had sworn it would never happen—

  and sipped some from a cardboard cup while examining

  Ben’s face for his thoughts.

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  Our afternoon meeting was held in the Quiet Room,

  where we had way too much history. Blocking out the

  images that came to my mind, I folded my arms as we

  approached the door.

  There had been another twist of events, only this time

  a good one. ‘The MRI has revealed that the damage to

  Jordan’s brain is less severe than we first thought,’ said

  Peter. My heart skipped a beat and I took in a quick suck

  of air. ‘We no longer believe there is a need to consider

  withdrawing his support.’ Talk about a roller-coaster. Was

  Jordan coming home for sure now?

  Peter explained the MRI results to us.

  ‘In that case, Peter,’ said Ben, ‘could you please talk us

  through the best and worst case scenarios for Jordan?’

  ‘Certainly, Ben,’ said Peter with a nod. ‘Worst case

  scenario—he could be in a wheelchair, which he could

  operate himself, with full paralysis down the right side of

  his body.’ He looked at me and I nodded, lost for words.

  ‘Who is to say when someone else’s life is or is not

  happy?’ he asked rhetorically. ‘We believe he could still

  lead a happy life.’

  I was still catching up with the news that Jordan was

  going to be okay, that he was staying. But now I imagined

  him half-paralysed in a wheelchair. What did that mean?

  Could he still laugh and talk and think for himself? Ben

  remained still and focused beside me.

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  ‘Best case scenario,’ Peter continued. ‘He could have

  a slight limp on one side of his body, and maybe need a

  walking stick.’ My shoulders relaxed at the gentle image

  of my boy, all grown up, with a walking stick—maybe it’s

  wooden, and maybe there are books under his arm.

  After the meeting, Benny and I walked out of the

  hospital, stunned, and crossed the road to where Mum sat

  outside our local pub, waiting anxiously for us, a glass of

  wine and a drawing pad in front of her.

  ‘We’re taking him home, Mum,’ I said. Tears welled

  instantly in her eyes and she rocked her head back to let

  out a laugh. Her whole body seemed to relax with relief.

  ‘We’re taking him home,’ I repeated, enjoying the words.

  Mum shook her head and raised her glass in a toast. ‘To

  taking him home,’ she said, and I leant down to her for a

  drawn-out gripping embrace.

  After Leo died, our focus shifted to Jordan. We put all our

  hope into him, and willed him to grow well with all

  our might. And he did. He began to put on weight, after

  only maintaining his birth weight for the nearly two months

  since he was born.

  With every ten grams of weight he gained, we clapped

  our hands and squealed with delight. (Well, I did; Ben

  smiled and nodded.) We slapped right hands together in

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  mid-air, and kissed Jordan’s cheeks and hair and fingers. We

  beamed and laughed with pleasure and hope, and whispered

  our grand plans into his ears: ‘We’re taking you home soon,

  beautiful darling boy, we’re taking you home! We’re taking

  you to the beach and the park and to birthday parties! You

  can meet your cousins and ride a bike and go to the zoo!’

  NICU comprised two rooms. At my request, Jordan

  was shifted from NICU 2 into NICU 1. It was quieter in

  there, and seeing another baby in Leo’s cot beside Jordan

  was way too painful. Midwives who had been with us

  since our arrival thought it was a good idea and gave quiet

  nodding consent.

  Also, a bigger, sunnier apartment became available in

  the same block. But we were due to move on the same day

  that Jordan was to come off the
ventilator—a major event.

  It would be the first time he had ever breathed unassisted,

  and I was beside myself with excitement. ‘I should be there!’

  I told his midwife.

  ‘It’s actually better if you’re not here anyway,’ said

  midwife Jade. ‘We’ll call you as soon as it’s done.’

  I turned my phone’s volume right up and slipped it into

  the chest pocket of my denim jacket. My ears were sharply

  pricked while Benny and I traipsed back and forth between

  apartments, lugging bags and boxes of clothes, books and

  Benny’s work papers.

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  When the phone finally rang, my hand shot to my chest

  in fright and I fumbled to pull it from my pocket. ‘Hello?’

  ‘Hello, Ingrid . . . It’s Jade speaking. Jordan’s come off

  the ventilator beautifully.’

  ‘Oh my god!’ My eyes prickled. ‘He’s breathing on

  his own?’

  ‘He’s getting a bit of help from CPAP, but he’s doing fine,

  and when he first came off, he was breathing completely

  on his own.’ CPAP stands for Continuous Positive Airways

  Pressure. I looked around for Ben. ‘We’re really happy with

  him,’ continued Jade. ‘He’ll be alternating CPAP with air.

  That’s the usual process. That’s how we hope to wean him

  onto breathing unassisted.’

  ‘Oh, thank you! Oh, I’m so pleased! I can’t believe

  it! We’ll be right over . . . Thank you, Jade.’ I hung up

  and bowled down the corridor towards Benny: ‘ Jordy’s off

  the ventilator!’

  Compared to the old apartment, the new one was light-

  filled and luxurious; to us it felt like a palace. Our bedroom

  was a whole separate room, with a door that closed, mirrors

  and built-in robes. The kitchen was still small, but twice

  as big as the last one; I skipped from room to room. There

  was a bookshelf in the living room and a bench seat on the

  balcony outside our front door.

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  The light and space were bliss, but it was also a relief

  to get away from the emotional darkness I had come to

  associate with Apartment 19. This was a new start. Jordan

  was a step closer to coming home, and the sun was pouring

  into our shiny new abode. Yeehah! I made us cups of tea

  and sighed contentedly as I plonked myself on the couch.

  Benny set up his office in an alcove off the dining room,