The 11th of March and 24th of April are significant days in our family’s history. This year, 2017, is a significant year for us as well. This year, the 24th April marks ten years since our courageous son, Matthew lost his battle with the difficult cardiac condition with which he was born.
This is what his cardiologist wrote to us at the time.
“I found it so sad yet appropriate that you had phoned me on ANZAC day to tell me of Matthew’s passing- he had in some senses been a soldier against the travails that fate had sent – determined, confident and brave, but in such a sweet and mild-mannered fashion. As a child he had been asked to bear a psychological burden that few of us could imagine, as well as a physical burden with which he coped with courage, dignity and grace.
In some ways, he had an angel’s character, and I always felt a little inspired and in awe of his “just get on with it” attitude. The fear was there, I guess, and certainly some vulnerability too, but his optimism and force of character were such that he could conquer them whilst remaining a soft and caring boy.
I can truly tell you that I cared for him a great deal and will never forget his courage and bravery in the face of his terrible illness. He was blessed, however, with two extraordinary parents, and I mean that very genuinely. Your love shone through him, and that’s what helped him be strong. I hope his sweet nature and determination to be well, for as long as he was able, might give you a glimmer of a smile at times when you’ll just want to cry.
I and his other doctors were as one, in our admiration for this most special of young men, taken just far too soon”.
I always feel uncomfortable putting up the piece where the doctor talks about my wife and I as extraordinary parents. We were always just doing what came naturally to us and when there were problems needing hospital treatment (thankfully not often), we had extraordinary support from friends at home who looked after the property and stock so we could be with Matthew. These kindnesses we will never forget. Doctors and nurses always commented on Matthew’s calm and level headed approach to his afflictions. Some of this came innately from him, but a lot of it was to do with the relationship he had with his extraordinary mother, Mary. He had a wonderful sense of humour and was a joyful young man, despite the burdens life had thrown his way.
Although it is intensely personal, I feel a need to share our feelings in the hope that those who are dealing with difficult medical problems, especially when affecting their children, may take heart and know that despite the darkness that descends after the death of a child there is life to be lived and at some stage you can begin living it again.
Despite our desire to hold back time, time has kept ebbing away, taking us further in time from our dear son Matthew. For me, that was one of the most painful feelings, that of wanting to be in the last moments of holding him in our arms, forever. In those moments that became days and weeks we could hardly function. We could hardly sleep, we cried oceans of tears and tried to find solace with each other; nothing would take away the pain. Getting meals only happened through the kindness of the people of Boorowa who all knew Matthew, and cared for us.
You become aware of a whole lot of connections, the passing of which brings on waves of grief. Over many months and with the help of a wonderful grief counsellor we gradually began to feel the size of the waves of grief, and their frequency, almost imperceptibly, diminish. Passing Matthew’s birthday, celebrating his sister’s birthday without her soul-mate, was tragic. Christmas, a time Matthew loved so much, lost its meaning. Family gatherings, doing the things he loved like sharing a meal in a favourite restaurant, all these little life events we take so much for granted, became painful for a long time. For about six weeks we were protected from the gloom by products our bodies made to put us into a somewhat numb state. This made us able to seem to the world, that we were coping. There is a paradox in this. People would come up and kindly want to know how we were. If we were moved to tears, they would think we were not ‘coping’. But in reality if we were showing our emotions we were alright. If we were stoic and holding it in, we were much less likely to be alright. With grief, the world judges us to be dealing with things well when we are not being outwardly emotional, but the opposite is closer to the truth. After six weeks our bodies stopped the protective cover and we were back to coping on our own resources. This was a time of gloom and we were probably depressed, I am a farmer and we had a lot of sheep at the time. I could only do what I absolutely had to do, and no more. I spent lots of time walking round the paddocks and weeping. The tears you shed at these times flush some of the adrenaline out of your system and you feel a bit at peace after the tears. We never tried to hold back the tears, having read about their physical value and the emotional release that made life bearable.
No-one trains you for grief, often it is an event that comes out of the blue. In Matthew’s case he was going downhill physically and had gradually been putting on fluid because his heart was not able to do enough work to keep him well. He had been in hospital at RPA where it was thought he had suffered a virus that had left him with less heart function. The doctors felt his only option now was a heart-lung transplant, an operation where you trade a cardiac problem for an anti-rejection problem, so we went up to St Vincent’s where they perform these very intimidating surgeries. My wife and I seemed to function well in a crisis, our focus was always on Matthew’s welfare, we stayed at the hospital to be near Matthew and tried as best we could to understand his situation. All the doctors we consulted over Matthew’s life were outstanding, compassionate, communicative and full of empathy.
But deep within us we always knew that his unique heart would begin, at some stage, to fail. That was what was going on in January 2007 when he ended up in RPA and St Vincent’s.
Because Matthew was born with a complex heart condition, he needed a lot of care when he was a baby, he was tiny at birth and we picked up on the vibes of hospital staff that his future was uncertain. He was blessed with an extraordinary mother who had an instinct for knowing what he needed and he gradually grew. In those early days he was getting help from a diuretic and another drug called lanoxin to make his little heart squeeze a bit harder. After a couple of years these drugs were stopped and he lived the rest of his twenty one years without the assistance of medication.
I have often reflected on the effect on us, of the constant anxiety that we felt for Matthew and his future. It is hard to evaluate, we seemed to be normal and Matthew carried his burdens lightly because I think he sensed that we were concerned for him.
Matthew and a friend he had in Boorowa used to try and write really good language and stories to each other on a blog, it was a sort of literary ‘duelling banjos’, and after he died Shaun went looking on the internet for something Matthew may have written of a personal nature, about his view of his own life. He stumbled across what is for us an incredible insight of a young man speaking about his trying to reconcile his life with his own mortality. We were so grateful to have this and would certainly never have found it ourselves.
It is interesting that we only really think about how precious life is when someone near to us dies, or is on the fast track there.
Sorry if that sounded morbid, but really it’s odd.
My Grandfather died on Sunday, whilst I was on a plane from Brisbane to Canberra, and steadily contemplating my own mortality as we went through a rather nasty batch of turbulence. I found out that afternoon, around 3.
Death is something that I have come to accept over my course of being in and out of doctor’s offices, and my two long stints in hospital. When I was about ten, and suffered a cranial abscess – hospital was a cool place that had abundant quantities of ice-cream and Nintendo. That was until one morning, about half way through my ten week stay. I was subject to frequent CAT-Scans to monitor the size of the abscess, a process that started with fasting many hours prior to the scan.
I had organised for the nurses to bring me some vegemite on toast at 5 in the morning (when I inevitably woke quite frequently) so I could eat, and still have “not eaten’, for the designated time before the scan.
5 came and went, so did the scan….. alas, no vegemite arrived, nor did the nurses who had promised so earnestly to deliver. I became quite stroppy when I saw the nurses next, they apologised, and stated that they had forgotten.
I learnt several days later, that the reason for their disorganisation was that the young Chinese boy in the room next to me had chosen to pass away that morning, and they were attending to his body. It has been a rare occurrence when I have felt the same guilt and disgust I felt for myself that morning.
That is my first most memorable memory of death.
Not that I wasn’t aware of it prior to that experience…. My first chronological memory of death is when Mum’s aunt died… I was about 8.
Since my philosophical and emotional awakening to the concept of death at age ten, I have been interested in the subject of mortality in general, and especially my own. There was a stage of about two years, from the age of 12-14 when the concept terrified me…. I dreaded an early death.
This stage thankfully passed however, and I gradually became more accepting about death.
People often say to me-“it must be so hard being you, with your heart and all”, possibly not verbatim, but along those lines….
I am not conscious of having had a particularly hard, or depressing life… This burden has probably fallen more upon my parents, as, like most people, they would compare what I have to deal with to what a ‘normal’ person is like. I can understand that this would be an ongoing source of worry for them, even though it is only infrequently one for me. I will say, however, that ‘my lot’ has probably forced me to deal with issues and ideas (such as mortality), at a much younger age than most.
I started planning the music that will play at my funeral at about age fourteen.
The list has been constantly changing since that time when it comprised of “Lightning Crashes” by Live, “Brian’s Song” from the Life of Brian and “Ironic” by Alanis Morrisette. Currently, the List is “DOA” by Foo Fighters, “Everybody Hurts” by R.E.M., “Winning Days” by The Vines, and “Till Kingdom Come “ by Coldplay.
This is not something I sit down and plan… I don’t have it written down (well actually now I s’pose I do). But if I hear a song that moves me, or makes me laugh, it will probably end up on the list.
Someone once told me this was a very morbid thing to do…I disagree; it brings an element of life and fun to a topic that is all too often tabooed. And when inevitably this mix tape gets played, I would like to think my spirit would like to listen to some tunes, and share a major part of my life with everyone who turns up.
So where does this lead us? What is the conclusion to this philosophical voyage?
A wise being once said “’tis not the destination that is important, but the journey in between”.
So on Monday, after Grandpa’s Celebration of life Service, I’ll lift my glass and say a silent toast.
“To Life, Death and other Miracles”.
Knowing that Matthew had reconciled himself to his future was incredibly comforting to us. And to know that he did not feel his life had been hard or depressing made us feel awe at his strength of character.
In the days between Matthew’s death and his funeral, his four cousins, big strong men mostly working in the mining game in Western Australia wanted to do something to help. They came over and spent a couple of days cutting and carting a mountain of wood. We were so grateful for this. With each wheelbarrow of wood I wheeled over to feed our stove, I would remember their love for Matthew and the effort they so willingly expended for us, in memory of him. It took a couple of years to burn through this wood and I knew where the end of it was. I did not want to burn the last pieces as it was removing a connection to Matthew, but eventually I had to concede that this wood, whilst harbouring a connection and memory of Matthew, needed to be burnt. We reflected on it as it warmed our shins in the Winter of 2009.
The years have ticked by, our memory of Matthew has not faded, we still remember with fondness the the warm hearted, affectionate young man who we loved so much. We can never forget the many kind acts people have made to help us through, out of their respect for Matthew. His life in many ways was a low key one, due to his physical limitations, there were many activities he was unable to join in. Sport was something that was beyond his capacity, but he did not let that worry him. In fact he was always bemused at the disproportionate amount of time people devoted to it. His life, and his attitude to the difficulties his heart condition imposed upon him, affected many people. He was a gregarious young man who loved people, and he was very comfortable joining in conversations at any level. His intelligence was immediately evident.
He had a wonderful sister who loved him and whom he loved. Their love for each other started the moment he first cast his eyes upon her, something I will never forget, that look of love in his eyes! She was a very generous sister, and even though she was six years younger than Matthew, she would carry his school bag up the drive, as it was a challenge for him. They spent a lot of time just being with each other and in the many photos of them, he always has his arm around her.
One thing we always did was to have a few weeks up the coast at Byron Bay in the Winter. It was warm there in late August and Matthew loved the sand. We’d spend hours on the beach reading a book out loud and building sand castles. It was a welcome respite, and we all had a pleasant time and recharged our batteries.
Life does not allow one to spectate for too long. Inevitably, time grabs us by the collar and drags us back into the river of life. You begin to be able to do the things you did so easily before this changed reality. And that is what your life becomes, a different version of what went before, with a memory that never leaves your consciousness. For a long time they are memories of sadness, but eventually through the general optimism that is a feature of the human spirit, the memories can be faced with a feeling of unending love and gratitude for having been entrusted with the care of one so inspiring as Matthew was.
The deep feelings never leave you, even now after ten years I can find myself giving a sob from the depths of my being when a vivid memory jumps into my thoughts. That is good, and a sign to me that his life and our connections are still strong.