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PAPERBACK BOOKS

NEVER TO BE EIGHT



NEVER TO BE EIGHT COVER

Never to be Eight is the story of our son, Luke Owen Newburn. Luke was born in November 1985 and died in January 1993, at the age of seven, from a childhood cancer called Neuroblastoma. Luke’s story focuses on his short journey in life and explores, in his voice, what it may have been like for him (as a child) facing a terminal illness.

At the age of five, while sitting in the Children’s Hospital in Randwick, NSW, Australia he asked me (his mother) if he would ever reach the age of eight. I told him I didn’t know – many months later he told me he wouldn’t reach that age; he would always be seven.

Never to be Eight investigates and delves into the conversations Luke had with his family and friends and the intimate details of his life so that the reader may take a glimpse into a child’s world that is about to fall apart.

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ISBN: 978-1-921574-67-2
Format: Paperback
Number of pages:153
Genre: Fiction

Cover: Clive Dalkins

© Cover Design—Zeus Publications 2019


 


Author
-
Karen G. Newburn

Publisher: Zeus Publications
Date Published:  2019
Language: English


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Dedication

  

In memory of Kathy Jackson

 

 

Acknowledgements

 

I would like to thank Zeus Publications for the ongoing support to get this project off the ground.

I would also like to thank the wonderful people I have met over the years who have encouraged me to publish Luke’s story, especially Redwood Writers’ Group.

Month after month, for over six years, we met listening, supporting and encouraging each other. I know they must have become quite sick of me talking about Luke’s story, but they all listened unconditionally. Also, I want to acknowledge the readers that read the early manuscript of Never to be Eight and continually encouraged me to make sure I eventually had Luke’s book published.

I would also like to thank my wonderful husband, Stephen, and Luke’s brother and sister, Rebecca and Karl, who have had to listen to me talk about this project for many years.

Luke’s story is a universal story of hope and courage and I hope his conversations about his short life inspire others to think about what matters.

INTRODUCTION

 

This project has been started many times over the past few years and it’s now time to commend this story to readers everywhere. It is difficult to put these words into form so I can describe in an imaginative way the life of our youngest son Luke. However, Luke’s story is about communication and how a young child (while facing a terminal illness) related his intimate thoughts to people close to him. Everyone who knew Luke learnt very quickly to listen to what he had to say, but it wasn’t until after his death that people began to think about the depth of their conversations with him.

I hope the following pages will take you on a trip into Luke’s world. This is a world where children do understand many things and, if given the opportunity, are able to express their thoughts and feelings in unique and diverse ways. The following narrative describes Luke’s life from his point of view and how he employed rich symbols to communicate his thoughts and feelings. These perceptions were drawn from videos, television, drawings, stories, and the people who surrounded him. Through his interpretation of these images he was then able to communicate to others his deep understanding of his journey. Luke came into the world facing many obstacles, but during his short life his spirit soared. There were no answers for Steve and I (his bewildered parents) to his dilemma, we did the best we could at the time, but one lesson we did learn early and that was to be good listeners.

Luke demanded that everyone he knew intimately (or just met) needed to take notice and listen to him. If someone didn’t take notice Luke had a knack of letting them know in other ways; sometimes these messages he wished to express made him appear cheeky, naughty, precocious, but at other times generous. Anyone who spoke to Luke walked away with more questions than answers. What an honour it was to watch people laugh at his antics, be strengthened by listening to his comments or shocked and disgusted by his wit. There are many such stories that come to mind, such as the grumpy old man who was in a hurry to reach the ground floor while in the hospital elevator one day, who was shocked to witness Luke slamming his hand over all the elevator buttons at once (which jammed the elevator) after being told not to touch them; a doctor who was leaving a hospital in Newcastle to travel to Sydney and was spotted running through the hospital’s main entrance red faced and embarrassed after Luke asked him for a lift to his nana’s house; and a friend who he told from his hospital stroller when shopping one day that: “Mum doesn’t have time to talk, she has to buy some hot chips for me, ’cause I’ve been waiting all morning for them.” The stories are endless. Our children are unique. We, as adults, just need to listen more and take notice. Close friends of the family undertook major life changes after Luke died. He was such an inspiring gift to all. Sometimes people felt pressured by his directness and were forced to look past his strong personality and only then could they catch a glimpse into his soul. Even today, many years since his death, the ‘pebble in the pond effect’ continues.

Luke Owen Newburn was born in 1985. After his birth, during a routine six-week check-up with the family doctor he was diagnosed with bilateral cataracts. Luke was operated on at three months old (for those first three months he was partially blind) and underwent two operations over a two-week period. At the age of four months he had a pair of long-life contact lenses inserted into his eyes (these contact lenses were revolutionary at the time). After they were inserted he had monthly check-ups with the specialist; the contact lenses remained in his eyes for that period and weren’t removed until he was nine months old. I’m sure he never slept while they were in his eyes, because he always seemed restless and agitated. The contact lenses irritated him and his eyes were red and itchy for most of that period. As far as Steve and I were concerned the new ‘experimental’ contact lenses were a disaster. I complained on every visit to the doctor so when he was nine months old the doctor recommended that Luke be given glasses. I was assured by the specialist that Luke would find them comfortable and would never remove them (little did he know – I’m sure he never had kids). The moment the glasses were placed on Luke’s baby face I knew Steve and I were going to be in for it. Our vigil began. Anything Luke did was an event: moving, walking, talking, eating, speaking, and being able to see was continuously monitored. The glasses that the doctor advised Luke to wear were fastened to his face with a ribbon tied around the back of his head. There was no other way of securing them. Luke’s glasses, while making him appear cute and innocent, became a source of control for him and anxiety for us. They were utilised as a form of defiance as he made his strong will and personality known. A battle lay ahead for us and Luke’s glasses were the central weapon.

The local optometrist became our second home. Whenever I picked up Luke’s new glasses from the script, I prayed I made it past the shop entrance to the pavement, but on every occasion (when he was little) I had to do a ‘360’ and venture back into the store. The glasses we had just purchased had been flung off, landing with a crash onto the pavement. Sometimes I caught them in mid-air, but that was rare. Luke squirmed in his stroller, crying and screaming, with no glasses in sight. It was always an adventure when we went to purchase glasses and regularly I ordered several pairs at once. However, when he reached the age of two Steve and I had other strategies in place. We learnt to wait until the safety of home before placing a new pair of glasses over his eyes, but during those early days the lenses (which were raised in the middle like goggles) were constantly scratched and marked.

Up until 14 months he had been examined by a plethora of specialists because of his slow physical progress. After finding nothing else wrong with him and feeling exasperated, Steve and I returned to his eye specialist. During this examination the ophthalmologist discovered that he had prescribed the wrong glasses for him after he had removed the contact lenses five months earlier. It appeared that Luke had been wearing glasses for short sightedness, but it was discovered by the specialist that he was long sighted. At 14 months of age he was given the right glasses. His motor skills and physical progress had been inhibited up until that point by this mistake. When the new lenses were fitted into his glasses within weeks he was crawling and not long after that he also began walking around furniture by himself. And, to our amazement, within weeks he was running everywhere. Luke was now 18 months old and nothing was going to stop him.

The following three and a half years flew by as we settled into as normal a life as possible. Luke demanded more attention than our other two children because of his problems, but as life happens Luke’s troubles weren’t over and by 1991 his struggle to finally live a carefree life with his family was about to change. In 1991 Luke began school at five years and three months. The ‘glasses’ issue was slightly resolved, but he had a way of utilising them whenever he thought it was necessary. Although he took great pleasure in using his glasses when he wanted something (hiding them, throwing them onto the cement, etc.) he didn’t achieve what he wanted as often. Luke sort of understood by then that there were boundaries.

However, toward the end of his Kindergarten year (October 1991) Luke was diagnosed with cancer. During the months leading up to his diagnosis Steve and I knew something was wrong, but we couldn’t pinpoint the problem. It took us three weeks of searching (GPs, scans, hospital visits) to finally be told at the Sydney Children’s Hospital that Luke only had a few weeks to live. Luke was diagnosed with a childhood cancer (rare in children over five) called Neuroblastoma. He was ‘stage four’ when diagnosed, scans revealing around 10 ‘hotspots’ throughout his body. Luke battled this cancer for another 15 months and lived in his usual ‘high-spirited’ way until his death in January 1993. I can’t say how Steve and I endured that period of our lives – but we have survived and are still together today. Luke showed us that life (and time) is too short and the quality of our time together is precious and important. He also allowed us to understand that life does go on. Children die, adults die, our pets die – this is part of life. No one knows how long we have to live. He always said he would be ‘alright’ and I’m sure he is out there somewhere riding his roller-coaster ride in the sky or flying around on his rocket ship. Luke painted a picture of ‘his place in heaven’ and I’m sure he is still there enjoying it.

Luke’s external world consisted of his family, close friends, schoolmates and chance meetings with many others throughout our community. How Luke interacted with these people was what caused the rippling effect over time. As I mentioned earlier, he was that ‘small pebble’ that was thrown into the centre of a large pond and everybody that heard, knew, talked or brushed past this child was stirred. He taught everyone that we are truly here for a ‘blink of an eye’. He was very candid about his journey which was disconcerting to many. He had an incredible ability of being able to express his inner wisdom in a unique way. He talked about death (and his life) and wondered at the age of five if he was going to ever reach eight. If he said something relevant (or funny) he always asked me to write it down. I was given the task of recording countless conversations. This was daunting to say the least. It was a gift to be a witness to this process, but also a burden. Many tears were spilt along the way while re-reading some of our conversations. I hope in some way Never to be Eight helps people understand the power of our emotions; to be able to recognise and work through any traumas we may encounter and survive it. It is how we deal with these emotions, that is: love, courage, hope, joy, anger, sorrow, fear and terror that makes us rise above unprecedented situations that life hurls our way. Our children share this full range of emotions (as we do), it is just more difficult for them to express themselves. This is why children develop their own unique language to express these strong overwhelming feelings (especially before the age of seven).

This reminds me of a story of a particular nurse that Luke and I met at our local hospital. The nurse, who we had met on several occasions, took Luke’s blood for a routine test one day. He was irritable and infuriating that day: a typical ‘Luke Day’ when he wasn’t going to do anything for anybody and was angry with everyone and everything. When we reached the hospital he began by kicking the nurse wildly. He didn’t want any blood taken and he made sure everyone knew it. The nurse retaliated by raising her hand to give him a ‘good whack’. The assisting nurse and I stood horrified as we leaned across Luke, grabbing her arm to stop her. With her hand suspended in mid-air she sheepishly stopped staring at us in dismay. Luke screwed up his eyes, peering at her intently through his glasses after his outburst, fully aware of what she intended to do. He then sat on the hospital chair subdued, while the other nurse and I pricked his finger for a blood sample. I did see that nurse on a few other occasions, but she never ventured our way. Out of anger Luke taught this nurse a big lesson when working with children and when to draw the line. The assisting nurse and I knew Luke was dealing with far greater problems than either of us understood.

Another Luke story was the day he ate his last ice-block – that moment is etched in my memory forever. The ice-block was a Rainbow Paddle Pop which was his favourite. I had never observed anyone eating anything like this with such passion; each bite lingering just a few seconds longer in his mouth as he relished every morsel. The small portions of ice-block somehow transported Luke to another dimension of the senses, taking the tasting and eating of food to different heights. I was mesmerised. I had never witnessed anyone eat an ice-block in such a fashion. Time stood still. It was as if he and I were caught up in a surreal ‘time warp’. On that day those few minutes forced me to take stock on what matters. I decided then and there to always remember to fill my senses with life, passion and fun. A smile forms even now when I remember that instance of Luke eating that ice-block.

As I mentioned earlier, Luke asked me to write down our conversations, but it wasn’t just our conversations. I was also asked to write down other information that filtered through from neighbours, nurses and friends which I placed in a Luke Journal. However, Steve and I never knew about some of these conversations until after Luke’s death. We were surprised to hear about how many people Luke spoke to and how these conversations had enriched everyone’s life. Whenever he spotted me on the computer or writing something down on a scrap of paper he would ask what I had written and if it was about him. I always told him the truth. However, there were a few occasions where Steve and I attempted to tape our conversations against his wishes, but none of the audiotapes were clear and the conversations were garbled. Luke told us not to tape anything or take any photos of him and funnily enough, there are two videos of him and only a few photos of him when he was ill. As you can imagine during those harrowing days, sometimes we didn’t want to hear what Luke knew and emotionally it was very difficult to listen, copy or take note of everything we talked about.

However, one day I decided to take a few photos of him. This was a few weeks before he died. He heard my husband and me talking and stated ‘matter-of-factly’ that we must not use the camera to take photos. He was blind by this time and for some reason I wanted to take a photo of him. We never mentioned we were holding the camera (but somehow he knew) and without saying anything I took some photos. At that time you had to send your film away to be developed. We had forgotten about them and by the time they were returned to us Luke had died. Two pictures out of a roll of 36 negatives were printed; one or two of these (which were of other family members) were in the middle of the film. However, all the photos of Luke were non-existent and many others were over-exposed. Luke had warned us not to take any photos and consequently none of these photos were ever developed.

 

***

 

When we found out we were to have our third child it was a time when we were struggling financially. Rebecca and Karl were at school and I had been looking for work to supplement our income. We had moved into our new home at Metford 12 months earlier and were struggling to maintain it. Our small cottage was a dream for us. I was always worried about our financial security, but I was also excited about bringing another child into the world. Little did I know that our third child would be our teacher, as well as a mentor to our two other children. We weren’t to know just how much an impact this pregnancy was to have on our lives; only now do we see Luke as he truly was.

Luke was a character. He came hurtling into our lives, bringing with him unconditional love, a determined spirit and an expressive mind. All of this put together contributed to and supported a strong personality. We felt lucky and tried our best to be caring and nurturing parents (although there is no manual) wanting to give our children a warm and safe environment in which to grow. Parenting doesn’t come easy – everyone has to work at it. However, we must remember that our children are unique individuals in their own right. I am sure there are many people out there who have grown up in families where children were not treated as individuals and told that they have no rights to be seen but not heard, is the saying. Or why aren’t you more like you’re brother and sister etc?

Luke, Rebecca, and Karl were all different. Steve and I often wondered if Rebecca and Karl’s battle with life was taken for granted. As Luke’s baffled and bewildered parents we felt consumed by him, watching every move he made, every grain he ate and every cliché he expressed. Only now, in retrospect, can we see how tough it must have been for his brother and sister growing up in a house where their brother was so demanding.

As the great man, Kahlil Gibran, wrote in The Prophet:-

 

Your children are not your children.

They are the sons and daughters of Life’s longing for itself.

They come through you but not from you,

And though they are with you yet they belong not to you.

 

Steve and I attempted to be as honest as we could with all our children, honesty and openness being one of the vital keys to communicating with them. But being honest about Luke’s illness (with him as well as with Rebecca and Karl) allowed us as a family to grieve and also helped us work together through all the issues that confronted our family. Writing this story has been like an old wound that has been healed over and then bumped a little too often and without warning begins to bleed all over again. Since Luke’s death he has materialised many times in dreams and meditations. One of the more powerful and memorable meditations was when I was attending a yoga class many years ago. I could feel my body shaking while lying on the yoga mat. As I tried to bring my body under control I heard a little voice yelling, “Are you stupid? What are you waiting for, Mum? Hurry up and write my story.”

Tears rolled down my cheeks, dripping onto the mat. I knew then that his story had to be told to help others. That was some time ago and this story has been changed and reworked many times since. So, before you read any further, ask yourself a couple of questions on how you communicate with the children you know. Do you travel to their world? Or do these children have to travel to your world? Asking these questions of yourself may open up your mind to other ways of thinking, especially when dealing with the children that surround you.

The reader will notice that throughout this story I deliberately have not over-emphasised the word cancer. I don’t want you to get caught up in Luke’s illness. I want you to understand the person behind the illness and how he interacted with his world. The word cancer is given a lot of power by the media, the medical world and society. We all know somebody who has died (or been diagnosed) with this disease of the body.

I will now hand you over to the spirit of Luke, who will explain how he lived (and died). How he was able to deal with everyone and everything in his life in a positive way, sharing with many his uniqueness. At times not understanding why people did what they did, but allowing them to be themselves. And above all how he changed all our lives forever…

 

 

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