This diary was only ever meant to last 4 weeks, the time it should have taken Edward to have his operation, recover and come back home. Two months on, he is still not home. Of course, he will never come home, but it is nevertheless time to stop this diary.
What started out as a journal of expectation, became one of hope, followed by despair and grief. But I also hope that, despite the tragedy that unfolded, I have been able to convey his courage, dignity and, above all, the tremendous legacy of love that he left with us. I hope that I have managed to keep away from self-pity, shown just how proud we are of Edward and inspired some of you with his story.
This is Edward’s blog, not mine. I have leant on it in my grief but enough is enough. I must let go and let it be what it is – a tribute to a beloved son, brother, grandson, nephew and friend. It’s not right for me to continue to use it as a catharsis for my grief. I can and will do that elsewhere. Furthermore, its most important role is still to come, when Alice and Arthur will be old enough to read about their brother’s bravery and dignity. I will tidy it up, add some pictures and maybe put up an occasional update if it is appropriate but otherwise the time is right to stop. As I write, my sadness is palpable. Part of me feels like I’m saying goodbye all over again but I know that this is not true. He will always be in my heart. I will continue to write elsewhere even if nobody reads it, because I have to. Whenever I write about Edward, I feel connected to him. For those of you who remain interested, these new posts will appear on my personal blogging site at www.andywheatley.com in the ‘Life’ section. For those who decide not read on, thank you for your support throughout this journey. Tens of thousands of you have joined me along the way and you have helped a grieving father more than you will ever know.
It is now two months since Edward died and during this time I have tried to capture how I feel but it’s hard to do justice to the depth of it. I think the best I can do is to repeat something I said to a friend a few days ago privately. My heart is broken. It will eventually put itself back together, but it will never be the same again. The tears still come every day, the pain is constant and it is still hard to believe what happened and that Edward is physically no longer here. The longing for a lost child is surely one of the hardest challenges life can throw at you.
But, there is hope. In amongst the debris of pain, Edward’s legacy shines through. Although my heart is bleeding, it is not blood that it sheds, but love. I know it sounds like a throwaway line by a lovelorn poet, but it’s true. Despite the sadness and the tears, I have, since the moment Edward died, felt surrounded by love. Perhaps it’s just another symptom of grief that will fade away over time but it feels profound and permanent. From now on, I will live my life with a new perspective based upon a foundation of compassion that I never knew existed.
I first began to realise this whilst writing the address for the funeral. I looked back at my memories, photos and stories of Edward for inspiration but couldn’t find the right words. My mind kept being drawn back again and again to the very last moments of his life which remain as clear and as vivid as if they happened today. As I reflected on those precious moments, the words began to flow and his funeral address practically wrote itself.
When Edward died, something happened that has changed my life forever. I have told close friends and family about it but have been reluctant to share it widely because it is deeply personal and, to be honest, open to ridicule. But it is important, because it completes a sequence of events that my previously cynical and evidence obsessed mind has now had to accept as meaningful. I have worried too much about what other people might think but I can’t do that any more. This my truth.
When we turned off the inotropes we knew that Edward only had a few minutes left to live and I was filled with fear that it would be awful. We had been warned that he might fight for breath as his body desperately reached for oxygen and we prepared ourselves. Clare, as serene and motherly as ever, chose simply to close her eyes, lay with him, hold him tight and surround him with the love that she so brilliantly gave him throughout his life. I leant on the bed, to the side and slightly above them, with my arms around both, but kept my eyes open. These were the last moments that I would ever see my son alive. I had to witness every aspect of it, even if just to believe that it was really happening.
One, two, three, the minutes passed by. We whispered softly to him, letting him know how much we loved him. Four, five, six. As I stared intently at his still beautiful face, hoping with all my heart that he would die peacefully, his mouth opened slightly. I readied myself for the worst, fearing a final, rasping, desperate attempt for oxygen. But to my relief it never came. Instead, he gently exhaled and something left him. It lasted less than a second but was unmistakable. A gentle pulse of soft light emerged from his mouth and diffused into the air around him. It was silent and subtle, but clear against the semi-darkness of the dawning day. I can still picture it now. Every time I remember that moment, I see that light.
I don’t know what it was, but I saw it. I instinctively and immediately felt that whatever animated Edward’s body, that gave him his personality and the character he was, left at that moment. His spirit, his energy, whatever you want to call it. There is a Buddhist belief that life is always present. It doesn’t die because it is never born. It just is. It only manifests itself when the conditions are right and, if or when the body it resides in is no longer able to support it, it leaves. I think Edward’s left at that moment.
I turned to Clare, her eyes were still closed. Even though the monitor said that his heart was still beating I knew that he had passed away. I whispered softly, “He’s gone.” A couple of minutes later, at 5.28am, the line went flat. I kissed Edward and Clare, left the bedside and went to let Emily, our nurse, know that it was over. The doctor then came and confirmed his death after which I made my way to the parents’ room, where John, Jenny, Fiona and Steve were waiting, to break the news. Four and half years of the most precious, beautiful and loved of lives had come to an end.
It pains me that only I saw what happened. Not just because the impossible burden of proof is on me but also because it was beautiful. I wish that everyone could have seen it. I have since played the incident again and again in my mind. Did it actually happen? Did I just see what I wanted to see? Perhaps I made it up retrospectively, or my mind has played tricks to comfort and protect me from the pain of my son’s death. No, no, no and no. It happened. I know it did but I will never be able to prove it.
I am also sorry to those people who have sat with loved ones as they died and not witnessed the same thing. I can’t explain why I saw it whilst you didn’t and I am certainly not trying to insinuate anything or impose any beliefs. I am simply telling you what I saw. I have searched high and low for accounts about the moment of death and for every person that claims to have seen or experienced something similar, there are as many saying that they saw nothing. All I can say is that, for me, it happened. If I said anything else I would be lying.
After a few minutes, Clare and I walked together to a side room whilst Emily removed the remaining tubes and wires and tidied up the bed. When we came back, it was clear that we were no longer looking at Edward, but just his body. The change in his appearance was stark but also reassuring. Without it I don’t think that we would have been able to leave him there that morning and drive from London to Bristol to be with Alice and Arthur. We knew we weren’t leaving Edward alone, because he had already left. I said the same at his funeral, telling everyone not to be sad by the sight of his small, white coffin. He was not in there. He was never in there.
Some ten or so days later, the night before the funeral, I went alone to see his body one last time. I did so for selfish and cathartic reasons. Tim, the funeral director, opened the coffin and left me on my own. I cried more intensely in those few minutes than at any moment before or since his death. I let out a lifetime’s worth of anguish, Edward’s lifetime. A life that was so fragile from the day he was born but so strong, dignified and happy throughout. I knew it wasn’t him in the coffin, but I felt that he was with me just as I have done ever since. By the time the tears had stopped and I had composed myself, I knew I would have the strength the next day to stand up in the church and tell everybody what I wanted to say.
Edward was and always will be love. There was a moment during his last week, when we still had hope, that summed this up perfectly. Jo, the lovely nurse who had known Edward since his first two operations as a baby, said something that will live with our family for ever. It was, simply, that love was keeping Edward alive. Jo repeated the same in her sympathy card some weeks later, adding that his calmness and dignity under such difficult circumstances were testament to the love that surrounded him. Thank you, Jo – this means the world to us. Once he was back in PICU, despite the constant rigmarole of tests and needles, he never complained, not once. It was if he was at peace with what was to come. As a family, we could not have loved him more and, in both life and death, he has shown us how important love is.
To all of you who have shared this journey with me, thank you. Your messages of love and support have helped to sustain me during the most difficult of journeys. We have received so many that we cannot reply to them all, but we have read every single one. Many of you have also contributed to Edward’s Memorial Fund which has now raised over £14,000 for Little Hearts Matter and is still going. You have done so much already but I ask of you, if I may, just one last thing. Our family will never forget him but it is only natural that, as time goes by, Edward’s story will become just a footnote in your lives. I ask, as I did at his funeral, that if you ever think of Edward, please let him inspire you to love your partner, children, parents and friends just a little bit more than you did before. Take time to look at each other, talk to each other and hold each other. We are all on this journey of life together. It will take us to places of happiness and joy but also fear and despair, but we can tell you from experience that, if you let it, love will help you through even the hardest of times. Thank you, goodbye and bless you all.
To Alice and Arthur, our beautiful children who have loved and lost with us – one day you will read this and, if you somehow have any doubt, will know for sure just how much you are loved and the role you played in making Edward’s short life so wonderful and precious. You mean everything to us. And, of course, my wife, Clare, the most private of people who has never read a single one of these posts but has always accepted my need to express my pain. We have walked this path together through great joy and immense sadness. You brought me Alice, Arthur and Edward, the greatest gifts of all, and are the rock on which we all stand. We are five. Forever.
And finally, to Edward, our beautiful, brave and wonderful boy. Your light shone so brightly and it always will. I will live every day of the rest of my life for you. We love you sweetheart. Now and forever.