Time To Say Goodbye

This diary was only ever meant to last 4 weeks. In that time Edward was supposed to have his operation, recover and come back home. Two months on, he is still not home. He will never come home. It is now time to stop this diary.

This is Edward’s blog, not mine. It’s not right to keep using it as an outlet for my grief. I can do that elsewhere. More importantly, its most significant role is still to come, when Alice and Arthur are old enough to read about their brother’s bravery and dignity. For those of you who remain interested, I will continue to write on my personal blogging site www.andywheatley.com in the ‘Life’ section. To everyone who has read and commented, thank you for your support throughout this journey. Tens of thousands of have joined along the way and have helped a grieving father more than they will ever know.

What started out as a journal of expectation became one of hope, then despair and finally grief. Despite what happened, I hope that I have managed to convey Edward’s courage and dignity, the tremendous legacy of love that he left behind and shown just how proud we are of him. Perhaps his story has even helped others in a similar situation.

In the two months since Edward died 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 what I said to a friend a few days ago. I feel broken. I will eventually put myself back together, but I will never be the person I was before. The pain and tears still come every day and it remains hard to believe 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. Despite the sadness, I have also been aware of immense love. Perhaps it’s just another symptom of grief that will fade away over time but it has been profound. From now on, I will try to live my life with a new perspective based upon this love that I have stumbled upon.

Before I sign off I want to say something. When Edward died, something happened. 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 feels meaningful. I have also been brutally honest throughout this dairy and it would be wrong to leave something out just because I’m worried what others might think.

When we turned off the inotropes on his life support we knew that Edward only had a few minutes left to live. I feared that these last moments would be awful. We had been warned that he might fight for breath as his body searched desperately for oxygen and we prepared ourselves. Clare, as serene as ever, chose simply to lay with him, hold him tight, close her eyes and surround him with the love that she gave so selflessly 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 him alive. I felt a need to witness every little thing, perhaps to help me accept that it was actually happening.

The minutes passed by. We whispered softly to him, telling him how much we loved him. As I stared at his handsome little 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 breath. The so called death rattle. But to my relief it never came. Instead, he gently exhaled and something left him. A gentle pulse of light emerged from his mouth and disappeared into the air around him. It was silent and subtle, but just visible in 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 felt that whatever animated Edward’s body, whatever gave him his personality and character, left at that moment. His spirit, his energy, his soul. Whatever you want to call it.

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. The official time of death. I kissed Edward and Clare, left the bedside and went to let Emily, our nurse, know that it was over. The doctor then came to confirm 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 of the impossible burden of proof but also because it was beautiful. I have 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. No, no, no and no. It happened. I know it did.

I can’t explain what I saw or why I saw it and I am certainly not trying to insinuate anything or impose any beliefs. I am simply telling you what happened. 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 just in those few moments was stark but also reassuring. Without it I don’t think that we would have been able to leave him there 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.

Ten 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 yet 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. It was like his hand was on my shoulder. By the time 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 about him.

For me, Edward has become 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 him since his first two operations as a baby, said something that will live with our family for ever. She said 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 me 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 so much. 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 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. If you somehow have any doubt, you 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 love you with all my heart and miss you so very much. I will live every day of the rest of my life with you in my heart.

25 thoughts on “Time To Say Goodbye

  1. Nicky

    Beautiful . bless you and your family. I work with your sister Fiona and after reading this she will get an extra hug tomorrow and it will be for all of you xx

  2. Alex Preston

    Hello – I am an old friend of Fiona’s from Germany – we used to work at the same school.
    I have read her posts and your blog from time to time and as a mother myself felt moved by this to say something. First of all, though I do not know you, please accept my deepest sympathies for your loss.
    The account of Ned’s last moments you described is actually wonderful and an assurance that all seems as has been promised us – that this life is not the end and that you had witnessed an extremely special moment when his soul left his body. I speak with some experience as I and my family saw something very similar – though different when my father died.
    I wish you and your family strength and many blessings. I will keep Ned in my prayers. Alex

  3. Kirsty McGill k

    Andy, beautifully written as always. You are all always in our thoughts. Edward will never be forgotten, and will always be in our hearts. As are you, Clare, Alice, and Arthur. Much love from Scotland.

    Kirsty, John, Sandra and Bill xxx

  4. Kathryn Sykes

    Hello Andy,
    I know your lovely sister from St George’s School, JHQ … I have followed her posts, have read some of your blog instalments and also passed on my love & thoughts to you and your family via Fiona, but after reading today’s chapter I just wanted to say directly to you how amazing I think you and your wife are … I’m a mum and I can’t even begin to think how I’d cope, but I can only hope that, if need be, I’d cope half as well (if that’s the correct word) as you.
    There are two sentences that will stay with me from today’s post … “We are five. Forever.” Simply gorgeous. Prayers, love and thoughts to you and yours from me and mine xx

  5. Annelies

    I am beyond moved by your love, dignity and the beautiful way you express both. I may never get to meet you, but you and Edward, and your whole family have changed me. I once knew another boy who never got to grow up – he would now be 27 and his too short life continues to make a profound difference in the world, as I know Edward’s will.

    I don’t know you, but I love you all, and send you that love.

  6. Jools

    Thank you, once again, for sharing, Andy. I trust what you saw entirely and I’m sure that many, many people, who know that our energy never dies, understand what happened as being something entirely normal and natural.

    I will never, ever forget Edward and the impact that he, you, Clare, Alice and Arthur have made on my life.

    Thank you and love to you and yours, always & forever,

    Jools xxxxx

  7. Sparkle

    To my bravest, most humble friend. If there was anything any of us could have done to have changed the outcome that resulted in your losing Ned, we would all have do it.

    Your incredible blogs and Ned’s life have literally touched the hearts of thousands and thousands of people and do remind us all to love that little bit more and to cherish what we all have.

    As you have said, Love is Ned’s legacy and you my dear friend and Clare, Ned, Alice and Arthur have been an inspiration as you have shared the ups and the downs with us all.

    You know that I believe what you saw and as we have spoken about, it is a priviledge to be present when someone you love so dearly leaves their bodies.

    I am so humbled every time you write and I honestly keep thinking Andy that you should be a writer. You have an incredible talent.

    Thank you for sharing this very personal and now painful journey.
    Still here and will always be for you, Clare and the kids whenever you need.

    Sparkle xx

  8. Quentin

    You are all heroes in my eyes. Truly a desperate immeasurable journey that filled me with hope, love and ultimately fear. Take care with yourselves and I hope in time to come we have a chance to meet up talk, laugh and enjoy the life Your son had. Looking forward to that moment. Until then my heart is with you. Qx

  9. Sally Spring


    We met this morning unexpectedly at the petrol station – what to say, not enough I fear. Although you performed the british stiff upper lip remarkably well, your eyes told a different story. I could see the deep anguish, the heartache and profound loss that only the death of a child brings. I am so sorry.

    However I must share with you an observation that was just not appropriate as we dodged the car trying its best to run you over.

    Many moons ago as a member of toddler group FUF’s I remember some weeks after Edward’s operations you and Claire both came to the group with your boys and Alice. Everyone was so excited to see you, clucking mothers in overdrive ! I remember so clearly as if it was a moment ago (although I am sure you do not!) of sitting with you as you cradled Edward in your arms. Edward with his jet black hair and an uncanny resemblance to you! You told me about his condition and what the next steps were, you told me of your mission to get him through each hurdle. You looked down at sleeping Edward and when you looked up at me there was a sparkle in your eye, one of utter love – something very special that is hard to put into words . There were plenty of mothers in the room with ‘that look’ of recent parenthood but yours was different…I can not explain how but it has stuck with me ever since.

    When we spoke about the ‘car alarm’ and the light, your eyes suddenly lit up again and had a hint of that sparkle again. As you have told us so clearly in your blog, Edward was loved and gave love. He is sending you messages of hope and of love, helping you through these dark days. Take each day at a time and know that you are all in my thoughts and prayers.

    With much love
    Sally, Dave, Ben and Sam

  10. Norma

    Dear Andy,
    Thank you for including us on your journey; it was not just cathartic for you. Many of us needed to be in touch too.
    From your hopes and anxiety as parents of a child who ultimately needed a life saving operation; right through to trying to explain how you are as a grieving father and family, As you say you cannot explain the depths of such anguish. Non of us can or even dare, to allow ourselves to imagine.
    Andy you and Claire showed us all such strength at Edward’s funeral, helping so many others to cope ,which was amazing to see. Grief is almost a taboo subject isn’t it (culture /religious differences of course) and yet at some point in our lives we will all have to meet it and cope as best we can; but the magnitude of loss and grief must be overwhelming when it is your child.
    Your hopes of how you conveyed any message (as you say at the start of this page) I believe you have well and truly achieved.
    Part of your account of your experience as Edward passed, as I witnessed in nursing, rang so true. The body is just “a vessel” for the person, their spirit / soul. They look ‘different’ (not unpleasantly) peaceful; but they have gone.
    Last night I caught the repeat of Gloria Hunniford’s interview and she spoke candidly about how her daughter Caron’s belief’s; and now her own belief on finding a white feather is Caron’s ‘calling card.’ She finds this a great comfort.
    Gloria also said she had previously worried about what other people might think; she doesn’t anymore. I was taken by her next sentence, so hit the pause button to get this quote with you in mind re your little white feather….
    “actually I don’t care whether anybody believes me or not or people think it’s a load of piffle; you would be amazed the amount of times I get that feather at the very moment I need it.”
    Your experience of light whilst Edward passed is yours to keep; whatever anyone else can say ,or think of you.
    In difficult phases as you move forward with life , I hope you can get more little glimpses of light.
    You as a family have made an impact on so many peoples lives ,as did Edward; and through the responses to your blog the love sent to you all, even from complete strangers, from around the world, is wonderful.
    You are right; in our crazy busy lives , non of us probably say or show love as much as we should/wish to, towards our loved ones. Just to spend time together can be difficult at times, so there’s my starting point; don’t know if my teenagers want that though!
    I still think of you as Team Wheatley ; you have shown us how love is your “glue.” I send all five of you my love,respect and best wishes. Hope to bump into you in Ciren . Norma XXXXXX

  11. Mia Robbins

    Dear Andy,

    I have spent the past couple of nights reading this blog that my friend kindly shared and I have never shed so many tears for someone I didn’t know. I am struck by the honesty, the raw emotion and how deeply this has affected the way I look at life now. You have a wonderful family, Andy, and Ned was very lucky to have had so much love from you all. I have 2 boys and I have to say I gave them bigger hugs (if that is possible) after reading this – you have opened my eyes to the important things in life and for that I am grateful. Life is too short to be bothered by the ‘little things’.

    About the light you saw, I know exactly what you were talking about. My grandfather had shared with us, long ago, how he witnessed the passing of his then future father-in-law (my great grandfather) when he passed on many years ago. He saw a light leave the body and he said if you concentrate hard enough, anyone could see it when the moment came. It is poignant for me to be writing about this to you today as it is exactly 30 years ago that my grandfather passed. He was one special man.

    Sending you all a world of love – you are very brave to open up your life to us and for what it’s worth, you have truly made a difference in my life. Thank you. Thinking of you and your family at this very difficult time.


  12. Erica Walpole

    Andy, I must say that I have really grown to appreciate your posts on various social media. Some I love for their twisted humor. Some I like because they relate to CSR which is an interest of mine. And those about Ned. Wow. They almost always stop me in tracks and make me think or feel. Sometimes the feeling is profound grief, sometimes love, sometimes compassion, sometimes incomprehension. I’m sure I’m forgetting others. But they make me think too. They make me think about both what is and is not important. They also remind me to try to connect, truly, with other people (and myself) and to try to do it with dignity and grace. You have my deepest sympathies and also my admiration. My love to the “forever five”.

  13. Gregg Newman

    Andy, that you saw what you saw is, in my mind, beyond doubt. We are privileged to know you and Clare and Fiona and Steve.

  14. Pippa

    How amazing and utterly believable. Edward’s life force, soul, energy … so young and pure; a light that will never fade.

    This is from The Prophet by Kahil Gibran. You have probably read it before but I just wanted to share it here. X

    You would know the secret of death.
    But how shall you find it unless you seek it in the heart of life?
    The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.
    If you would indeed behold the spirit of death, open your heart wide unto the body of life.
    For life and death are one, even as the river and the sea are one.
    In the depth of your hopes and desires lies your silent knowledge of the beyond;
    And like seeds dreaming beneath the snow your heart dreams of spring.
    Trust the dreams, for in them is hidden the gate to eternity.
    Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honour.
    Is the sheered not joyful beneath his trembling, that he shall wear the mark of the king?
    Yet is he not more mindful of his trembling?
    For what is it to die but to stand naked in the wind and to melt into the sun?
    And what is to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?
    Only when you drink from the river of silence shall you indeed sing.
    And when you have reached the mountain top, then you shall begin to climb.
    And when the earth shall claim your limbs, then shall you truly dance.

    1. Warren

      Andy, while you sign off from this blog, you should know that your strength and compassion in putting your heart and soul down on paper have changed many of us. For those of us privileged to read about Edward’s journey from this world to his next life, we have learnt about strength, love and family bonds that few of us will ever be able to understand let alone match. Edward was an amazing boy on earth and I am sure will still surprise from the beyond. Thanks to you he will be remembered as an inspiration, who has changed many of our perspectives on life. I for one will remember him, thanks to you. I wish You, Clare, Alice and Arthur all strength and happiness going forward.

  15. Malcolm Sutton

    I was in Evalina in July with our little granddaughter Abaigh who was having the first of the three staged operations for HLHS. Abaigh was desperately ill after her operation and her recovery was very slow and we were all so worried for her.
    I only ever saw Edward lying in bed in hospital but knew of his fight from the nurses and conversations with his grandparents and we were all hoping and praying that he would recover against the odds. We were all so sad and tearful that weekend when we heard the worst news.
    I have only just found his diary and read the last few entries but wanted to say how deeply affected I was at the time and again now reading about those few days again.
    Thank you so much for sharing Edward’s story with us. Although it is one of the most harrowing accounts it is also one of the most uplifting things that I have ever read.
    Much love to you all.

  16. Mark Curtis

    Hello Sir,
    My name is Mark Curtis. I am a friend of a family who has been going through a similar time. The Barley / Cannon family and little Max have one big Op to go! I’ve just read your words and wanted to leave you a short message to say thank you. Thank you for writing this deeply personal account, this private and honest observation of Edwards last moments. Families, friends and people close will always be there in times of despair and heart break. But to stand there knowing that you are not alone, that others have been through this and have found something that has helped carry them through, and shared it…well, this gives us all an extra strength to love and support our nearest companions. Max will be fine! I know that now on reading your beautiful words. Max’s family will be fine as well. With strength we look on. With love I say again, thank you!
    Mark Curtis

  17. Sally Spring

    As Christmas approaches I just wanted to say that you are all in my thoughts so much.
    There are no words to say that will ease your loss, I just wanted you to know that
    I send my love.

    Sally Spring and family

  18. David Simpson

    Thinking of you again. It’s a year since my own sons last trip to Evelina. He’s been on an improving curve ever since, dropping medicines and gaining height.
    …but there’s no cure, so nothing to say that what was is your past isn’t in my future.
    Thank you for putting words to what was a nameless terror for me. It’s easier once it’s named, I don’t know why but it is.
    A couple of times as I’ve been walking through Canterbury there have been white feathers floating down in front of me. That’s now Ned’s symbol.

  19. Nerys Evans

    Thinking of Edward. May his spirit be happy with angels, and may love unite you all. Nerys xx

  20. Eve

    I have never read this blog before. I of course new it existed but I am very emotional and felt it would be too much for me to read. I never met Edward but I can imagine him, I have seen numerous photographs and William is such good friends with Arthur that I feel I know the sort of little boy that he was.
    I was right, I did find the blog chalanging, simply because I am a mother and because the reality of what really unfolded was so much more than I had imagined. Andy your words are beautiful and it left me thinking if that was ever us, if we were ever in this position I hope we could guide and support our child the way that you both did, all the way. Seeing that your son went on his journey with so much love and peace, giving him both of your strength at a time when you had very little left, It’s incredible. Further more seeing the lovely young man Arthur is and how much William thinks of him is even more humbling. You both continue project your love to all three of your beautiful children. And that Is inspirational indeed.

  21. Victor Kerr

    Andy you where one of the first parents we spoke to on savanna when our son Cameron was transferred from Belfast at 4wks old with HPRS it was nice to talk with someone who had been through what we still had to face.
    I had only now came across your blog and couldn’t stop reading through it it was a fantastic source of info and how you found the strength to keep it going amazed me, as I can remember the roller coaster ride we went through during Cameron’s operations.
    You will hardly remember this but it makes me smile every time I think of it, when you told me staff had given your comfy chair in picu to someone else and you lost it with some poor fella and made him give it up I can just imagine the look on his face. I remember we bumped into each other passing in the hospital corridor at 2 am you were coming and I was going you face spoke a thousand words Edward was back in picu and you weren’t sure if he was going to make it , all I could manage was to give you a handshake and a pat on the back.
    We have often thought of what happened to Edward and we are sorry for you loss but what a fight he put up such an amazing little lad and what a loving family.
    I wish you and you family all the best in the future.
    Victor, Debby


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