February 24, 2024


school 1993

I sat down this morning to create a web page with suggestions for fund raising in aid of charity.

I began listing some of the fund raisers I have been involved in, then comparing them with all the new ways fund raising can be done today.

My memories of that time are so traumatic that there will never be a time when I describe the death of my son as a past experience. We live from day-to-day with the mentality of survivors.

Writing this page with the intention of helping other people come to terms with a terminal diagnosis is a continuing part of my coping mechanism. 

I am compelled to write about the coping strategies we used, with the benefit of 20 years of mourning.  I hope my experience sheds some light on the confusing emotions everyone involved tries to understand.  As a survivor, perhaps I will have insights which help others to make sense of their emotions, which ultimately will help everyone who is affected.

With the benefit of hindsight, I now see the bigger picture.  I didn’t consider the feelings of all the people who were involved in our lives.  Like a ripple on a pond, our situation rolled through our community affecting people I never even met, but in some way they were connected with us.

Primarily, there was our family unit of my 8 year old son with a terminal diagnosis, which at that age he was unaware of. Then there was me, (his mum), his dad, brother, grandparents, cousins, aunts, uncles and his friends, (just a bunch of kids, too young to comprehend the diagnosis).

The situation is so much bigger than you can comprehend at the time. His teachers at school, and the additional classroom assistants brought in to help as school/classroom situations became more of a struggle. Physiotherapists, occupational therapists, taxi drivers who drove him to and from school. Such a wide circle of people who were all affected by their connection to a boy determined to make the most of his time, but ultimately destined to lose his mobility until finally his condition would kill him.

Most people go through life without ever meeting someone trying to live with a death sentence. We, his parents were too young to understand all the consequences of his condition, and the people who gave us strength to survive at our time of utter despair, were much appreciated but nobody can be prepared to handle every situation.

Alex Japan 1

Every minute of every day, someone is diagnosed with a terminal condition. They have just been delivered a death sentence, and a doctor has to inform the person, or the parents, when the patient is under 16.

That message can be delivered in a variety of ways and no matter how, it is the most earth shattering event most people will ever experience. Doctor’s are not best equipped for relaying soul destroying news and are hopeless at it.

Over the phone? To a parent of an eight year old?

I am writing from the experience of my family: from 1990 when the diagnosis was delivered, until 2003 when the death sentence occurred.


We deal with this situation in the same way as we handle mourning. Psychologists call it the 5 stages of coming to terms with the death of a loved one.

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

Or others call it the 7 stages of grief:

The 7 stages of grief are

  • Shock and denial: The initial phase when learning about the death of a loved one or other significant loss.
  • Pain and guilt: The emotional and physical suffering that follows the loss.
  • Anger and bargaining: The feelings of resentment and frustration that may arise from the loss, and the attempts to negotiate or reverse it.
  • Depression: The phase of sadness, loneliness, and hopelessness that may accompany the loss.
  • The upward turn: The gradual improvement of mood and outlook as the person adapts to the loss.
  • Reconstruction and working through: The phase of rebuilding one’s life and identity after the loss, and resolving any remaining issues or emotions.
  • Acceptance and hope: The final stage of accepting the reality and finality of the loss, and moving forward with life.

When trying to continue day-to-day life, Dads, aunts, uncles, friends; those who are not directly involved with the caring, struggle to find their place in the whole picture of this “drama”.

For the primary carer, nothing has changed on the surface. Underneath, their emotions are so raw that the slightest word triggers tears, anger, desire to turn one’s back on the world, just hide away.

Secondary carers struggle with the same emotions, but they have their job, or they may not be a relative. Their situation is just one small step of distance enabling them to be more objective, a position which can be very helpful.

The Best Friend A boy of 8 or 9, he stood by during the confusing teenage years.  I imagine not everyone is fortunate enough to have such a staunch and loyal friend.  A teenager who would pick up and carry his friend out through doorways, up and down steps, and eventually, out to the car when they went to college or out to visit other friends.  I wish I could give you insight into their feelings, but I haven’t had a best friend diagnosed with a terminal condition.

I met his friend again, for the first time in 17 years two years ago. One consequence of that experience with the death of his best friend, is his wariness of developing close relationships.

One conclusion I reached, is that we all gained strength from overcoming all the problems we had to deal with.  Yes, it has left us damaged in some ways, but much stronger in many others.  Over the years, some school-mates and other young people were inspired to organise fund raisers and give generously of their time, so they may not have realised how much these kindnesses meant to us.  I think that they gained an understanding and empathy they might not otherwise have learned.

Writing this and re-reading it is leading me to consider more observations of that time and I am pausing here to give it more time to focus my mind on the most important helpful advice.

In the meantime, I would really appreciate a little feedback from you the reader.

Any ideas that you think would be helpful to others, please add in the comments box below.  No need to add your name unless you want to.  Any questions you have, I will do my best to answer, but perhaps the experience of other readers will help.