Trauma and love: the remarkable life of my son, Luke

My son Luke Whitfield was born on Christmas Day 1991 at 5am in Melbourne and died on June 19, 2023 in London. His death replicated his birth.

Sophia and her son Luke indulging in the cricket

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My son Luke Whitfield was born on Christmas Day 1991 at 5am in Melbourne and died on June 19, 2023 in London. His death replicated his birth – full of drama and trauma, but swaddled in love.

Luke was non-verbal and in the early years of his life he used a simple communication system to interact with his siblings, his older sister and two younger sisters and brother. He would nod his head for yes and turn his head for no, but he was unable to initiate a conversation.

This would be necessary, particularly as he started school. Luke’s first communication aid arrived when he was six and it allowed him to write out messages, first with a head switch, and then later in life using eye gaze. It opened up a window of opportunity for Luke, and like every child who finds their voice he immediately began requesting things he wanted. Very soon afterwards, he began to have conversations. He could tell me how his day at school had been. This developed into informing me of his plans for the weekend, and then – more importantly – into sharing his feelings.

I got to know my son, as did his siblings, through this communication. We knew each other so well that often with just a look I knew what Luke wanted to say, by looking at something he was interested in and then looking at me and then back at the object he used his eyes to point to things. It was one of the many ways Luke discovered he could engage in the world around him.

He was an intuitive observer of life, he watched and listened and could always pick up on the mood of everyone in the house.

Luke had such an expressive face and, ­together with his communication aid, he gained some control over his life, and this was quite something for a child (and later a young man) with no independent movement.

Luke and his mum during Covid lockdown.

He forged a life for himself, full of great friendships, and he planned every day with optimism.

His school days in Sydney were full of fun and adventures. Sydney’s northern beaches was the perfect location for us. ­During school holidays, the children would run up Allambie Road after tennis camp to meet Luke and me at the top of the hill at the Cerebral Palsy Alliance, which this year celebrates its 80th anniversary.

When Luke was 24 we moved to London for better healthcare and the benefit of my extended family as support. Lockdown with Luke was a terrifying experience. My one goal was to ensure he did not have to be admitted to hospital. At the time that was tantamount to a death sentence. Four of my children were with me, while a fifth, the eldest, was in a flat nearby with her husband and baby. No one came into the house, and we didn’t leave the house in order to protect Luke. The one exception was that every two weeks we received a delivery of Luke’s food, 14 bags of Total Parenteral Nutrition which was stored in a fridge in his bedroom. Luke was fed intravenously every night through a pump (this took place over the last 12 years of his life.)

Stuck to the fridge was a weekly timetable of care divided up between three of my children and myself every day. I was always responsible for setting up Luke’s intravenous food at night and taking it down in the morning as this was a sterile procedure that I had been trained to do by the hospital. One of us was with Luke all the time, we split the day into two-hour care slots and every two hours his carer, a sibling, or me, changed over.

Each of us had a different activity we enjoyed doing with Luke, and so having the change every two hours added interest to Luke’s long days during lockdown. The morning block of two hours required two of us to get Luke out of bed and showered and then we could start our day.

My youngest daughter was revising for her final school exams, my youngest son was writing his dissertation for university and my middle daughter and me were both working.

We would all be sitting together, and next to us, Luke would have his headphones on as he listened to Stephen Fry reading Harry Potter. Every now and then, he would start laughing and we would all stop what we were doing, take Luke’s headphones off and have a chat about the stories that were making him laugh. Luke was of the Harry Potter generation. He was one of the many children that lined up outside Pages and Pages bookshop in Belrose dressed in a cloak, holding his wand with a lightning scar on his forehead waiting for the next Harry Potter book to be released to the public.

Those first three months of lockdown were exhausting but I relished the time with the children and knew that we would look back on this time with great fondness. We regularly talk about the terror and the craziness of those months. But, as is often the case, out of adversity came new interests, and the connection and love between siblings and school friends was never as strong as it was in those months.

Every Friday evening I hosted an “Aussies in London” pub quiz over Zoom for my children and their Australian friends. Luke had two friends, brothers, living in London, who had been at school with him in Sydney, locked down in separate flats, each of them on their own. In addition, my eldest daughter had a school friend from Sydney locked down in a flat with her partner. Every Friday night these young Aussies in their twenties would appear in windows on my screen, and for a couple of hours we enjoyed quiz night with friendly banter and lots of amusement. After lockdown Luke wanted to continue pub quiz night, so we started going to the local pub every Tuesday night.

Friends and siblings joined us. In the last year of his life, Luke would often fall asleep during quiz night, waking up a few times to answer questions – mostly cricket questions, at which he excelled – and then falling back asleep before waking at the end of the quiz and insisting that we stay until the scores were announced. We would plead not to stay, much to his amusement, and he got great delight from hearing our team, named Luke’s Skywalkers, announced in last position every week.

Communication was key to all of this, and while it was never a conscious decision of mine to write a children’s book based on Luke’s childhood, that is what I began doing, as he entered what I understood would be the final months of his life. All the memories, the friendships, a life lived large in two countries with a very definite allegiance to Australia, his country of birth, especially when it came to cricket and the Ashes. As I wrote, I was able to read a rough draft of Ava Spark (by me, writing as Alex Field) to Luke before his death.

He smiled in amusement. “So, you approve?” I asked.

He nodded.

“Recognise anyone?” I continued, just to be sure it was OK that I’d included so many of his experiences.

This caused an eruption of coughing – brought on by laughter. He recognised himself, his siblings and his childhood.

“That’s good to know,” I said.

It wasn’t until the final four days of his three-month hospital admission that Luke was moved to end-of-life care. He had his own room and was surrounded by family photos his three sisters and brother had put up on the walls. The Ashes had just begun and although Luke was by this time in and out of consciousness, it played in the background. Cricket had for many years been the soundtrack to his life, a familiar and reassuring sound for all of us.

Late one Sunday, I left Luke’s bedside, having said goodnight, for what would prove to be the last time. In the early hours of the following morning, I received a call to come to the hospital ­urgently.

 

Racing through the corridors, my heart thumping, I had only one thought in my mind: to get there in time. When I arrived, the room was full of doctors and nurses all lined up in a row. I raced to Luke’s side and with my hand on his heart I spoke to him, he opened his eyes briefly.

I was aware of his siblings arriving, one by one, and with each arrival Luke opened his eyes to acknowledge them. I couldn’t move from where I was, I needed to be close to him, and so I knew the moment his heart had stopped.

Luke died three hours after I arrived. He made sure everyone he loved was by his side to say goodbye.

Ava Spark: Hello, I’m Here! by Alex Field and illustrated by Joanna Bartell. New Frontier Publishing, $16.99.

About the book

Sophia Whitfield, who writes under the name Alex Field.

New Frontier director Sophia Whitfield’s new children’s book, written under the name Alex Field, is dedicated to her son Luke, who had cerebral palsy and died in June 2023. Set between the classroom, the playground and the spark of new friendships, Ava Spark: Hello, I’m Here! features illustrations by Australian artist Joanna Bartel, who brings the characters’ unique personalities to life.