100 Days

Posted on November 5, 2013

My four year old son, Edward, died exactly 100 days ago, at 5.28am in his mother’s and my arms. During his time in hospital I wrote a blog to keep our family and close friends up to date. As Edward’s health deteriorated and my posts became more desperate I started to receive thousands of emails, often from complete strangers, many of which I would read out to Edward as I sat by his bedside in the middle of the night. When he died I continued to write but after a couple of months decided to stop, for my own sake as much as anyone else’s. It had become an emotional crutch that was taking over my life. More importantly, it was Edward’s diary, not mine, and I owed it to him not to turn his story into a self-indulgent account of my grief. I wrote my final entry in his diary on 30 September and will not add any more.

So why am I now writing another post about my grief on my own blog? Well, firstly, my son left a legacy of love and compassion that I have promised to protect and this is one of the best ways that I can make sure this happens. Since he died I have spent countless hours searching the web for accounts of child bereavement because they are one of the few things that help my grief. I have discovered that this is quite a common thing to do and, knowing this, I want to be able to help others who suffer the same terrible loss by providing a kindred spirit who knows what they are going through. Perhaps my words will be the ones they find at 3am, tears streaming down their face, as they desperately search for anyone who can empathise with their pain, and give them the lift they need to get them through another terrible night. I have also received requests from other bereaved parents asking me to keep blogging and together these have helped to convince me that it is the right thing to do, no matter how small the audience. We belong to a club that nobody wants to be a member of, and membership lasts forever. As hard as our friends and family try (for which we are immensely grateful), there’s not much they can do for us during the darkest moments, but I do know from experience that it is possible to find some solace in the writings and experiences of others who have walked the same path. If my blogging helps just one person, then it will be worth it. If you are a parent who has lost a child and have just stumbled across this post I offer you nothing but love and a shoulder to cry on. I get your pain.

Secondly, and maybe self delusionally, I feel that I can impart some useful learnings to others in general. Losing my son has almost destroyed me but I am still standing and have learnt many lessons. The best analogy I can think of is being stripped to the bone and exposed to all the fear, despair and anguish that the world can thrown at you. The blows knock you over and the kicks keep coming but, somehow, you get back up and rage in defiance.

And then, out of nowhere, a sense of calm descends upon you. The cycle repeats itself over and over again but the answer is always the same. Grief is the price we pay for love. The greater the love, the harder the grief. Yes, I have been stripped to the bone, but the flesh that is returning is less layered and much stronger than before. I know some will dismiss this as the words of a sad and bereft parent, confused by the loss of a child and unable to deal with reality. I have already seen the tell-tale glances and rolls of the eyes from some people I speak to, even more so after they hear my account of Edward’s final hours. I am ashamed to admit that I too used to do the same before this tragedy happened to me. But now I understand. This is real. It is happening. Life will never be the same again.

Finally, I have realised that I still need to write and am more capable of doing so objectively now that my grief is no longer a stranger. Grief is a nasty piece of work but, although the pain remains profound and always will be, I understand it better and can write without hyperbole. And, let’s be honest, it doesn’t really matter if nobody else reads a single word. I need this. It is my personal catharsis for unfathomable despair. It brings me comfort to write about my son and this is a good enough reason on its own. I’m not forcing anybody to read it, but I’m secretly very proud that thousands of people do because it helps to me to think that Edward’s short life might make even the slightest impression on the lives of others.

So, how have those first 100 days been? Well, there’s no point lying – they’ve been awful. Grief has no cure and follows no rules. Two weeks ago I thought that I had managed to navigate the worst of it only to be struck down by a wave as intense as it was in the days immediately after Edward’s death. In some ways it is worse because the protection afforded by the initial shock and disbelief has gone. Edward is dead. I miss him and the pain is all consuming. I think about him constantly without even trying. I close my eyes and he’s there. He is my last thought when I go to bed, and my first when I rise. It isn’t always bad – I sometimes laugh and smile at his memory but the tears are never far away. To think I used to have this ridiculous theory that you can cry yourself out of tears. How silly that seems now, 100 days on.

And of course there is the rest of my family, the most important people in my life – my wife, daughter and son – who share my pain. I worry about them constantly, fearful that my own grief will make me neglect my parental and spousal responsibilities at the time when they need me most. It is a treacherous balancing act but we are united by our love for each other and for Edward and I am quite sure that it is this love that has sustained us throughout. I cannot stress this enough – if there is anything that can get you through grief, it is love, the same love that causes the pain in the first place.

I can’t say it is unbearable, because I am still here, and I hope that this, on its own, will bring comfort to others in the early stages of grief. But these are the hard yards. Quite rightly everyone else’s lives have returned to normal and this is the way it has to be. It is only natural. The world cannot stop for us and I feel no animosity towards others because of it. It is my challenge to learn how to rejoin the world as the different person I have become and, crucially, to help everyone else understand that I have changed forever without being condescending or holier than thou. My closest friends – many of whom I have known since childhood and who have worked so hard to help me these past few months – have yet to learn that the person they used to know does not exist anymore. Please don’t be sorry, just accept it. I have had to accept something far, far worse. There is life before, and life after, losing a child and they are a million miles apart from one another.

Bereaved parents don’t want pity but we do want recognition. We are not claiming that we are any better than anyone else, but we have experienced a pain so deep that very few of our friends will ever understand. It’s something we hope you never have to go through but, if you do, we will be here for you. I promise you that. We have suffered the death of a child and the life we used to have. Neither will ever come back. I am aware of how conceited this may sound and write these words with extreme caution but I have been on both sides. I have watched friends lose children, thought that I ‘felt’ their pain and then wondered why they never returned to being the person they were before. I saw their interminable grief as a weakness, an inability to deal with reality and ‘get over it’ and would quietly dismiss them if they said that I did not understand. I mean, how bad can it really be? Well, believe me, it is horrific. I never understood what they were going through and you never, ever want to know how bad the loss of a child is. I am painfully embarrassed by the way I used to be but I didn’t know any different, and it is compounded by the knowledge that it is the very same people, whose grief I did not respect, who are now the ones that have opened their arms and embraced me in my darkest hours. Those who have lost children before us are the ones who can, and do, help the most. They know. We know. You don’t. That’s just the way it is. Please don’t think you know otherwise, even if you feel it will help, because it won’t. What we need is love, not platitudes. Sometimes, just being there is all you need to do.

This does not make me angry or feel superior in any way. In fact, I am more full of love and compassion than at any point in my life. During the first couple of months I was regularly irritated by the inability of many people to talk to me or acknowledge Edward’s death and occasionally became very bitter about it. However, over time I realised that I was the problem. Grief and pain is not compatible with a modern society that keeps death as far away as possible, so people are not equipped to handle it when it happens. It’s not their fault. Death is the only fate that every single one of us has in common and yet there are no lessons taught at school or university on how to deal with it. It has become one of my life missions to help people through the process of grief as either a sufferer or a carer.

If you are in the early stages of grief, please, if you can, try to take some comfort from what you are reading here. It is 100 days since I lost my son, the very worst moment of my life, but I am still standing. You can stand too. I will not tell you that it is not awful, because it is, but it is survivable. You will learn things you never wanted to know but they will make you stronger. They are not benefits, of course not. How could there possibly be any benefits from the death of your child? No, these are lessons in life taught by the cruellest possible master – death. I also know that I have a long way to go and may yet still fall but I am in regular contact with other bereaved parents who are years in front of us and have helped to prepare me for what is to come, like our first Christmas without Edward, his sister’s and twin brother’s birthdays and other normally joyful family occasions which are now filled with pain. It won’t make any of these easier to cope with but the knowledge that others have got through tells us that we can do it too. Sometimes this could just be enough.

This love and compassion is Edward’s legacy and I want to be able to provide the same support for others who will now sadly, but inevitably, follow us. Of course I will falter and make mistakes, but I owe it to my son, for the four amazing years he gave us, to bring his gift to life. So, I am blogging again. Not, you’ll probably be glad to hear, with the same intensity as before but simply when I feel I have something useful to say, that might just help someone else get through the toughest moments of their life.

 

What Others Are Saying

  1. Marie Warne November 5, 2013 at 12:15 pm

    What a beautifully moving and eloquent piece Andy. Please keep writing – I never get tired of reading.

    With love and admiration,

    Marie

  2. Marie Warne November 5, 2013 at 12:15 pm

    What a beautifully moving and eloquent piece Andy. Please keep writing – I never get tired of reading.

    With love and admiration,

    Marie

  3. Nerys November 5, 2013 at 12:42 pm

    Dear Andy, It is always heartbreaking to read your thoughts, but I appreciate knowing them. Thank you for sharing how things are with you at the moment. During so many different moments, I think about your darling Edward. It is with tears and a horrible sadness that I think of him no longer with you, and the only tiny source of comfort each time is knowing how wonderful his family are and how loved he has always been. Nerys xx

  4. Nerys November 5, 2013 at 12:42 pm

    Dear Andy, It is always heartbreaking to read your thoughts, but I appreciate knowing them. Thank you for sharing how things are with you at the moment. During so many different moments, I think about your darling Edward. It is with tears and a horrible sadness that I think of him no longer with you, and the only tiny source of comfort each time is knowing how wonderful his family are and how loved he has always been. Nerys xx

  5. Shirley November 9, 2013 at 8:59 am

    Brilliant. Thank you x

  6. Shirley November 9, 2013 at 8:59 am

    Brilliant. Thank you x

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