Let the fire burn

Posted on April 23, 2017

When I wrote so extensively about my anger last time, it was because I had come through it. I still feel that way. Life continues to get better. So it’s as much a surprise to me as anybody else that I’m writing about it again.

I have had a few relapses, but nothing I can’t handle, and certainly nothing that might have hurt anybody else. However, a few people have made some comments. I know that they are well meant but, as I have discovered throughout this journey, what follows is better out than in.

I don’t know how many – if any – bereaved parents I speak for, but my relationship with anger is far more complicated than sadness and all the other emotions associated with grief. Combined with my sense of humour, which can be pitch black, it can be difficult for those looking in, some of whom try to intervene when it is largely pointless. You have helped as much as you can. There’s nothing left to do. This isn’t self pity, just an explanation. There are many people in the world who have experienced far worse. 

Before I get to the point, I want to explain why I sometimes get angry. Here are some of the causes:

Watching my son shake with so much pain that when he grabbed the metal rail on his bed the entire bed shook. We tried as best as we could to console him but our impulse to pick him up and hold him was prevented by the wires and tubes attached to him.

Hearing him ask what he had done to deserve the pain. His exact words. “Why is this happening to me, Daddy? What have I done wrong?”,  through gritted teeth and barely audible above his pain and shaking body.

Being unable to answer him. Broken inside.

Waiting for days, as a simple procedure that could have saved his life, was delayed multiple times due to staff shortages. A delay that allowed the infection that killed him to take hold.

Being forced by doctors to make him get up and walk, despite his clear agony. “It’s good for him,” they said. No it wasn’t. He wasn’t being lazy or weak, he had sepsis, which they failed to pick up. I will never forget the look in his face and his tears as he begged me to stop hurting him.

Knowing in retrospect that a simple course of antibiotics could have prevented the entire thing, but wasn’t given because it wasn’t deemed necessary.

Being taken aside by the doctor in charge, alone without my wife, after my son had been put into an induced coma, and told that mistakes had been made and that I can make a complaint if I want to, but believing that it would serve no purpose to blame the same people trying to save his life and who didn’t deliberately make any mistakes.

7 months later sat in front of the same doctor, after my son had died, and accepting ‘for everyone’s sake’ that there was still no benefit in complaining because of the pressure we knew it would put those good and dedicated doctors and nurses under as they continue to save other lives. All whilst other parents take the NHS to court for similar incidents.I owe my beautiful wife – who harbours no ill feeling at all – for giving me the capacity to live with this. I still believe that this was the right thing to do, but it’s not easy. 

Watching him look at us, confusion and fear on his face, as they finally wheeled him away for the procedure when it was already too late. We felt utterly helpless. He didn’t open his eyes again until a few minutes before he died over a week later.

Being the proudest father of a warrior of a boy, who fought so hard against an invisible enemy, and who I was unable to protect when he could no longer fight for himself. I know that there is very little I could have done but I am a father. One of my roles is to protect my family. I failed. You will never convince me otherwise. Nobody else can deal with it but me.

Being given the ‘choice’ between turning off a life support machine or hoping for a miracle. Making that choice for him and wondering if he would have done the same. Reading about other parents who hung on in similar circumstances, and their child lived.

The collateral damage that nobody warned us about. A career that almost ended, how my working skills deserted me – both of which are still being rebuilt. A thriving business that collapsed. Years of savings destroyed, the debt and the slow journey back. It’s not the money that hurts, but the double whammy. As if Edward’s death wasn’t enough.

That it took me ages to pick myself up when other fathers were able to go back to work and provide for their family far more quickly. I am angry at myself for taking so long.

My loss of identity. I knew who I was before, but I don’t really know anymore.

The flashbacks to the worst moments, that come without warning and stop me in my tracks, and hurt as much now as they did when they happened. I can deal with them better as each year passes, but it’s still hard.

Being afraid to say that he was me, lest I be judged and somehow thought to love one of my children more than the others, when I love them equally with all my heart.

I could go on, but I hope the point is clear.

I am allowed to be angry. It is not a pointless feeling, or wasted energy, but an essential outlet. However well meaning you think your interventions are – unless you are a professional therapist or my wife – they do not help. They are more likely to make things worse. My outbursts are rare. Unless they personally affect you avoid the urge to advise me. If they do effect you, then talk to me, explain why and I will do my best to make amends. Only twice in the last year has it compromised anybody but myself. One of these was unfortunately at work but I have learnt to read the signs, to know when the mist is coming and to hide myself away until it passes. It’s a strategy that works and I’m getting better at it.

This is an explainer. I do not want your sympathy, just your empathy. I am providing information so that the next time you feel compelled to lecture me about anger, you think twice, even if it is done out of concern for my wellbeing. My anger, when it comes, is personal. I won’t let it hurt you because I know how lovely you are and that you don’t deserve it. But it is a personal victory of some significance that I haven’t and never will. I don’t expect you to be thankful because none of it is your fault. Just know the context. As we are always told, everybody is fighting battles others cannot see. I know you are too.

I am trying my hardest not to be an angry man. I survived the fierce and lengthy rage that engulfed me for the first two and a half years and I am doing well. These days, I fall into smaller holes and climb out, dust myself off, smile and go again. I do my best not to drag anybody into the holes with me.

However, there is one fire that will always burn. I never want it to go out. That fire is Edward. It will not die until the day I do. I dream, however hopelessly, that it will be him that extinguishes it when I hold him again after my eyes close forever. He, and only he, can put it out.

Everybody has been so kind to us and I will always be grateful. I know that this post is self-indulgent but, until and unless my trials and tribulations have an impact on you, please let me fight my own battles. I’m ok, it’s ok. I’ll let you know if I start losing.

And I haven’t said a single swear word either. Things are clearly getting better.

Thank fuck for that.

What Others Are Saying

  1. Matthew April 24, 2017 at 4:38 am

    Beautifully put whether you lose a child or a parent

  2. Clare Farthing April 24, 2017 at 1:06 pm

    Very powerful piece Andy – sending hugs X

  3. Julie April 25, 2017 at 7:26 am

    Different fires, total empathy x

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