Inevitably my views regarding death have been fundamentally changed by the journey that we have been on. I know this is a subject that most people do not wish to discuss or think about and our society as a whole has created it a taboo. I have had so much experience of different aspects of it over the past 19 months that I now feel very strongly against this and because of this I want to dedicate today's post entirely to this subject. I am also very conscious that many of you may choose not to read this and that is OK too.
We have received so many different reactions to our situation but I refuse to hide from it, brush it under the carpet or forget that it happened. It only pains me more when we are made to feel like we should.
What Jason and I witnessed and experienced with Thomas is something I would not wish upon anyone but why should we not feel able to share that experience to help people around us understand why we are who we are? After all, death is the one thing in life that we can guarantee that we will all experience at some point.
So many questions/debates around this have arisen in my mind as I try to make sense of it all and for the most part there are no answers. The inquisitive minds of Lucy and Oliver, who had received very little social conditioning at their ages at Thomas' death, has enabled me to challenge my own thoughts and opinions.
Thomas' last 48 hours of life were not pleasant or dignified in any way. We had to sit idly with him and watch him have seizure after seizure, vomit up anything he took on via his stomach (including the medication he was reliant upon) and fight for every single breath he took. If I could have ended his life then I would have jumped at the chance (and I'm saying that as someone who would have given my own life for his). It really is one of my most harrowing memories from my life.
When we woke and saw his lifeless body lying in my arms, relief came over us. He was no longer suffering and he could finally rest in peace. How could I possibly be feeling glad that my son was dead? I just eternally wish he had never become so ill in the first place.
Death will come to us all and yet vast sums of money are constantly ploughed into the drug and medical industry to find ways to delay the inevitable. Research into new cures for terminal diseases and illnesses are always being developed. This is something I have always supported historically but now I'm finding myself questioning whether this money would be better spent improving the lives of the living. If we are putting off the inevitable at what age or stage in life is it ok to give up this battle? Or should we really keep on striving to live as long as humankind possibly can? Will there be a limit to this as technology advances?
Then there is a big debate going on in my mind around euthanasia. How can we think of ourselves living in a civilised society when we are forced to sit ideally next to someone and watch them suffering a slow and painful death when we have the means to end their torture? How can it be that our pet cat would have been entitled to a more dignified death than our own son was permitted? This does not sit comfortably with me.
I know that Lucy and Oliver's exposure to death at such a young age and in such close proximity to their lives has given them the building blocks to reach beyond society's standards. Whilst I wish they had never had the opportunity to experience this, the professional help and support we received for them has helped them develop an understanding about life that they would never otherwise have had.
As the discussions and questions from them regularly continue and I can only hope to build upon this. Why do we therefore shelter our children from the truth? Is it not our own inhibitions and expectations as adults that make us jump to conclusions about their reactions and abilities to cope with such situations? Might we surprise ourselves if we give them the opportunities to gain this understanding?
As I said at the beginning, I don't know the answers to the questions I pose, I simply wish to highlight some of the thoughts that have been battling in my mind in the aftermath of Thomas' own death.
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