Journey’s End

How I wish I was not writing this post. This is the ending that was never meant to be. From the day I started this blog and every day until Saturday, it never crossed my mind that we would leave The Evelina without Ned. How could we? The fontan procedure has a failure rate of less than 5%. Ned had flown through two far more difficult operations. This was the easy one. He was strong, defiant, unbeatable. Yes, there had been moments of incredible anxiety but he always responded. And yet, today, we are bereaved parents, consumed by grief and scarcely able to believe what has come to pass.

I have not written for a few days because I have not been able to. But, just as I used the blog before to help me deal with the emotions of Ned’s journey, I now need it more than ever. The only way I can deal with the sorrow is to talk about it. I won’t tell you about the grief, the guilt or the pain just yet but I will tell you what happened.

Despite having flirted with death twice in the preceding week, Ned had survived an even riskier open heart procedure on Friday night. Everything else had failed, and the surgeons felt that this was his only shot. He was still critical but, as the surgeon remarked, he was more stable than he was before he went in and his numbers were all up. John, Jenny, Clare and I were so happy that we celebrated with a quick trip to Pizza Express, convinced that, at last, we’d turned the corner. The medical team seemed happy too, and encouraged us to take advantage of this improvement and get some sleep. How desperately wrong we all were. That night became the only one he spent without one of us at his side. Only time knows if this will come to haunt me.

Bouyed by the apparent success of the operation, we arrived bright and early in PICU on Saturday morning. Del and Jodie, his two night nurses, told us that it had been a fraught night trying to keep his blood pressure up with fluids but we remained optimistic. After all, it wasn’t a new problem and it was only 12 hours since the operation. It wasn’t until we had a meeting with one of the lead consultants later in the morning that our world was shattered. Ian sat us all down by Ned’s bed, and armed with a series of diagrams proceeded to show us how his circulation was now looking. He explained that a larger hole had been made to alleviate something or other (I’m sorry, I can’t remember what) and I asked if the hole could be reduced once he recovered. “Yes”, replied Ian, “but I am afraid that he is not going to recover.” Ned’s inability to generate his own blood pressure could not be fixed. His ‘circuitry’, as they called it, was fatally flawed and nobody knew why. He was simply one of the very few for whom the fontan does not work. The sepsis had made everything much more difficult, but it had been an opportunist infection allowed in by his failing fontan. The only decision left to make was when to let him go.

How could this be? Sure, Ned’s blood pressure was low, but it was acceptable and he was still mentally astute, nodding or shaking his head to questions. Surely this was a good sign? But no, he only had blood pressure and brain function because of the inotropes being infused into him. “Why can’t we just keep giving these to him until his circuitry starts to work?”, I asked. Surely all he needed was time. This was Ned. He won’t die. He can’t die. Please?

Ian just shook his head and, to his eternal credit, cried. Nothing else needed to be said. All hope was gone.

Once again, we made phone calls to loved ones, but this time with the hardest message of all. It was time to come and say goodbye. One by one they came, on the saddest journey of a lifetime. As evening fell, the conversation turned to the hitherto unspeakable – how to let our son die. We’re his parents – we’re supposed to protect and nurture him. How could anyone ask us to do this?

But love, as we now know, comes in many guises, including the duty to make the most difficult of all choices. Do you keep your child on permanent life support in the vain hope of a miracle or let him go, free from suffering and pain? If we kept him going, were we fighting for him, or for us? Did he want to go on? Had he had enough? Had we already put him through too much? Was he angry with us? Had we caused him too much pain? If we turned off life support were we betraying him after the fight he had put up? Impossible questions.

But you only had to look at Ned’s physical condition to know what we should do. Severely swollen and bruised, he bore hardly any resemblance to the boy we knew. Our once, bright eyed, handsome boy was unrecognisable. Whereas before we had been able to overlook this in the belief that he would surely recover, it was now clear that this was the end. There could be no way back. He was aware and able to communicate with us through nodding and shaking his head but this was as heartbreaking as much as it was re-assuring. How could we possibly let him go when he could do this? But there was no hope. His heart and brain were only working because of the inotropes and the ventilator. Life was unsustainable. We had to let him go.

There was no rush they said. If we wanted to, we could sustain him for days even if only to be able to spend more time with him. Part of me wanted to do this but I knew it was forlorn and unfair on him. I also, deep down, desperately hoped that somehow his heart would keep going once we turned everything off, believing that he still had one more ace up his sleeve.

We agreed that we would withdraw the drugs and machines keeping him alive over the course of the night. First, no more fluid infusions, followed by disconnecting his dialysis machine, leaving only the inotropes to sustain him. In the meantime, the nurses brought in another bed to put next to his so that we could hold him and sleep with him, one of us on each side. We had not been able to hold him for weeks and held him like never before. We told him how much we loved him. We kissed him, held his hand, all the time reassuring him and telling him not to be scared. But we never said goodbye, because even now as I write, he is with us in our hearts and always will be. Our biggest fear was that he might, despite the morphine, still be in pain. I asked him twice during the night, and both times he was able to let us know that he was not. It was a huge relief, but also tragically bittersweet – a boy who could communicate, even at the very end whilst others discussed his death.

Ned’s mental astuteness presented another dilemma. We could, if we liked, ask him if he wanted to go on. Part of me wanted to do this, to let him go on his own terms but we were advised that the burden of choice needed to be ours. There was no way of asking a 4 year old boy about ending his life in a way that he would understand. By asking him if he want to ‘go’, it would be feasible for him to think he was going home, and that was just wrong. In the end, by withdrawing the inotropes, we were, in a way, leaving the decision to him or his body to try to respond. It was the only real option available to us. Of course I hoped his body would respond, but at least if it didn’t I knew that his own body had had the final word. It was completely and utterly heartbreaking.

Every now and then I would get up and walk to the parent’s room where John and Jenny, and my sister Fiona and her husband Steve, were keeping vigil, to let them know what was happening. At around midnight they came to see Ned for the final time, leaving Clare and I to spend the final few hours with him. By 2am, only the inotropes were still active and we discussed how and when to turn these off. Should they go one after the other to squeeze out some more precious time, or should they be withdrawn in one go, leaving him only a few minutes? It was surreal.

We decided to wait until dawn, to let him go as the sun rose and a new day began rather than in the darkness and sorrow of the night. It just felt more like Ned. Initially, we chose to withdraw the inotropes one by one, but soon changed our minds as Ned began to gasp ever so slightly for air. We knew it was only a physical response, but we could not bear to see him go like this and quickly informed Emily that it was time to withdraw them all. We knew that this would mean that the end was imminent.

A doctor arrived. The final inotropes were withdrawn and Ned was disconnected from the ventilator. The alarms on the monitors were turned off. We held him, caressed him, stroked his hair and loved him. I kissed him so many times. It was one of things we always used to do – I would kiss him again and again and he would say yuck. But this time, my beautiful boy responded by kissing my lips. It is a moment that I will cherish for the rest of my life. After all he had been through, he was still capable of love.

Love is the greatest lesson to me in all of this. It was Ned’s gift, to love and be loved, and its foundations to me are clear – they come from the family that John and Jenny have created, that stands as a model to all of us of how families should be, surrounded by and giving nothing but unconditional love and creating people like Clare, the most loving and capable of mothers. It’s a love that accommodates everything, from the sharing of joy to the closing of arms around you in the depths of despair. This is not to take away from any other family, including my own who I of course love deeply. My family has also shown me nothing other than unconditional love and support – my parents and sister have been wonderful –  but anyone who knows the Austins will understand what I mean. They are one in a million.

The lines on his monitors become flatter and flatter. His blood pressure dropped, and his heart slowed. He opened his eyes briefly and a tiny breath escaped. I will aways believe that this was the moment his spirit left. I cannot explain why other than to say that something happened and he suddenly looked different. I turned to Clare and said, simply, “He’s gone.” Two minutes later, just before 5.30am, his heart stopped.

I don’t know how to express what follows adequately. Our desperation and sadness at losing our son was total, and yet his passing was so peaceful, even beautiful. It was a privilege and an honour to be there with him, to have brought him into this world, guided him through it and shepherded him out. Oh, how we wish that it had turned out differently. Our arms ache to hold him, our hearts are broken and we would give everything to have him back, but there was comfort in the manner of his passing.

The rest of the morning passed by in a blur. Plenty of tears and hugs with family, nurses and doctors. I cannot praise the staff at The Evelina enough. Their professionalism and dedication are incredible and there is no doubt that they did everything they could to save Ned. Yes, I will always wonder and torture myself that perhaps we didn’t realise quickly enough that something was terribly wrong, and that maybe an earlier intervention could have saved him, but we now know that it is likely that the die was cast from the moment the fontan operation was done. His body simply couldn’t take the new circulation and the sepsis took advantage. I just wish he hadn’t had to suffer so much. The final act was to bless Ned, and a lovely vicar stood with Clare and I around his bed, said some prayers and a few comforting words. By mid-afternoon, we were out of London and with family in Bristol breaking the terrible news to Alice and Arthur.

The journey was over. There is life before and life after you lose a child, and our world has changed forever.



54 thoughts on “Journey’s End

  1. Clare Doody

    Words cannot express my deep sorrow for your whole family, particularly you and Clare. You are both amazing and I hope that David and I are able to be of some help and support to you all in the coming weeks, months, years. Lots and lots of love xxxxx

    1. Maggie

      There are no ‘good words’ just great sadness. It was a privilege to work with Ned.
      My thoughts are with you. Maggie

  2. Quentin

    Heartbreaking end to such a courageous son and loving family. I take my hat off to you and to Ned as he is now free. I am sure it will be a long road to recovery and I am here shod you need an old friend to lean on. With all our love. Qx

  3. Katie Tampkins

    Your words are astounding, your love for your precious Ned tangible. We continue to send our love and are praying for you all, Katie xx (from fufs)

  4. Bridget

    Andy, you have shared your journey through this devastating experience with incredible eloquence, courage and love. I have woken up to and gone to bed with your blog for the last 2 weeks or so, it has been a privalege to share your innermost feelings, which you have shown to us all with honesty and have been unafraid to show vulnerability in the eyes of many. Something very few people are capable of, including myself. I am in awe.
    As you Clare Alice and Arthur go through the loss of a child and brother,something that most of us will never really understand fully, I can only offer my deepest and heartfelt love to you all. It feels so inadequate compared to what you are going through, but it is there for you all in abundance.
    Much Love,
    B xxx

  5. Linda

    Thank you so much for sharing this with us, beautiful and heartbreaking to read at the same time. Each and every one of us that has read your blog over the past weeks has been privileged to be allowed an insight into your journey. Much love to you all xxxxx

  6. beanie

    It’s impossible to find the words to express our sorrow. I pray that God gives you all the strength and peace needed during your time of grieving. The Bible says that Ned is now in the arms of Jesus in Heaven. God says we don’t die but sleep until Jesus’ second coming. You shall see Ned again but in the meantime you can rest assured he’s at peace.
    We’re thinking of you all and send our love.

  7. Di

    Unbearably moving, but the most wonderful testimony. What a marvellous family you are. As a bereaved parent myself, I know that life goes on – and joy returns – but everything is different. Good luck to you all on your challenging journey. Carolyn’s old friend, Di

  8. Warren

    You are amazing parents and Ned knows he could not ask for more. He will be with you always, eventually the pain will fade and you will be left with memories of happiness to have shared his wonderful but short life. Ned has touched us all. Our thoughts and prayers are still with you all. I know you will find strength to get through this as a family.Thank you for sharing so much during the past few weeks.

  9. carolyn1995

    I’ve been following this through the Eleys and been so impressed with your courage and openness. It seems that the answer to everyone’s prayers was that Ned shouldn’t have to stay in this rather wicked world, but be allowed to ‘burst the cage asunder’ and soar in the other worlds of God… I do hope that you find solace in your other children and that your hearts will heal..

  10. Derek

    Andy. We haven’t been in touch for 20+ years, and I am so sorry to be in touch under such circumstances. Andrea and Dodie have kept us updated with your blog. As a fellow parent, I feel totally gutted for you and Clare. Despite I didn’t have the chance to meet Ned, but he surely has touched us all with his courage and spirit. I couldn’t imagine what you are going through now no matter how strong and courageous you are. I can only hope that the family will find comfort in knowing Ned is now in a better place. We’ll continue to pray for yours and the family’s need as you grief. Pls take good care of yourself, as you’ll have to look after Clare, Alice and Arthur. Be strong, my friend.

  11. Melissa Pittock

    Clare and Andy. I really do not feel able to find the right words to say at such a time as this but wanted you to know how much I have been thinking of your family. You have both been astounding in everything you have done for Ned and must not regret a thing…..Ned’s kiss showed that. If I can ever help in any way please let me know. You are in my thoughts and prayers. Xxxx

  12. Sarah Watson

    I just want to let you know that our hearts are breaking as we read your beautiful testimony to your strong, brave, beautiful boy. You are all in our thoughts so much.
    The Watsons (Tom-Tom’s family)

  13. Nikki shears

    Andy and Clare, you are truely inspirational parents for i would not be able to write this emotional and most sad account of your brave little boy’ journey.
    I have read all the posts just like a book, glued to what will happen next and praying that all will be ok in the end- like you i never believed that anything could go wrong, i really prayed for ned and your family.
    You are so very honest and wrote every stage of neds journey so well, it was if i knew ned.
    I thank you for sharing your hearts with us, ned was so very brave and wish i had of known him under different circumstances.
    Stay strong and hope you can grieve in peace knowing that ned is always in your heart and memories and will be for eternity.
    Love nikki, paul, sophie & kian x

  14. simon

    Dear Andy,
    Thank you for sharing the end of the journey with us. Considering how devastatingly sad it is to read, I cannot begin to imagine what it was like to experience.
    Others have said it already, but your honesty, your bravery, your thoughtfulness and your love are truly inspirational.
    Nothing we can say now will make any difference to your loss, but I hope that the fact that you have shared it with us will help us all to help you deal with the days, months and years to come as you rebuild your lives with your beautiful family.
    All our love to you, Clare, Alice and Arthur, and we will never forget having been part of Ned’s Army.


  15. Rosie and Mark

    Our thoughts are with you Andy and Clare. We are so, so glad that Ned was able to slip away peacefully in your arms. With love
    Rosie and Mark

  16. Justin & Lucy

    Andy and Clare you have made such extraordinarily tough decisions with such huge love and tenderness – quite simply, amazing parents. We have just returned from France and will be visiting the Church in Cirencester to say a prayer for Ned in the morning, with our love Justin & Lucy

  17. Bridget and Ben

    I’m not too sure what to say, but I just want to send you all of our love and to let you know that you, Claire and your wonderful family are in our thoughts xxx

  18. David

    Thanks for writing this. It puts words to our unsayable fears for our own son….
    and yet I find I have no words to say.

    I’m riding for little hearts matter on Sunday and will be thinking of you and your family.

    If you can keep writing, I’ll keep reading. Hope we might meet one day.

  19. Kay

    I have had to sit and read yr blog entry tonight twice as think its is so beautifully written..our paths are so very similar with our 6yr old daughter getting to the stage of turning her life support off after her fontan due to severe complications and by a miracle she did survive albeit with many consequences..I have lived this with you through your blog and just so very sad for you and Claire.nothing more can be said other than tears xx

  20. Tony

    Andy. When we were at school together we used to roll our eyes at the sermons about hope and love. We used to day dream and run out to play hackey sack or whatever was the current craze as soon as we could. We were immortal and nothing could touch us other than the rogue blade of grass on the Rugby field that used to trip you up! We lived life without a care or worry unwittingly cocooned by our parents love. Then suddenly as parents ourselves someone pressed the emotional overdrive button and we suddenly understood and appreciated our own parents worries and concerns that we used to dismiss as just so annoying. Your blogs have effortlessly encapsulated what those ministers failed to do. You have touched the hearts and minds of all who have the privilege of knowing you and who have followed your heart breaking story. You have voiced the fears of all parents and tackled adversity head on. You have shared your most intimate agony with your friends and i admire your brutal honesty and amazing bravery. You and Claire are an inspiration. Your love and compassion are a shining light. Neds fighting spirit gave us all hope and it is amazing the challenges and hurdles he overcame in his short life. He touched all those that knew him and whilst I never met him from your writing I feel that I did. I am so sorry you did not get the happy ending we all craved and you so deserved. I cannot begin to think how painful this must be for you. I am in tears every time i think of what you must be going and have already been through. All i can say is you and your family remain in my thoughts and prayers and I wish there was something I could to do to ease the pain. Please give Claire, Alice and Arthur the biggest hugs from the Norris clan. We must meet up when we are back in the country and when it is not too painful for you to receive the best wishes and sympathy of others. You gave us hope and showed us what can be endured through love. Thank you for sharing and be safe my old friend and remember friends who want to help are only ever a phone call away. All my love. Tx

  21. Norma

    Dear Clare and Andy,
    As I re-read, your most moving account of your little Ned’s end of journey; I wish that I had words to try and ease a tiny bit of your pain.
    However I will try and plead with you; that where and when you have questioned yourself, and feel pangs of ‘guilt ‘, please be reassured that you are wonderful parents, most loving and supportive.
    Edward knew this.
    Your love and compassion saw him through.
    Please try to rest and sleep whenever you can; genuinely, if I can do anything, anytime,please call.
    With love,Norma. XXXX

  22. Sally Otter

    Thank you for sharing this most personal journey with us – I’ve found it captivating, heartbreaking, uplifting, utterly incomprehensible. I have a heavy heart when I think of you all in these first days and cannot imagine the depth of grief and anguish you all feel as a family and extended family. The line that has stayed with me though is that he was surrounded by love every day of his life. What a fabulous life Ned had with you, how fortunate to have such courageous, loving and generous parents. We’re thinking of you and send all our love.
    Sally, Jon, Olive and Bert xxxx

  23. Kerry

    Such a beautiful testimony Andy , thank you so much for sharing . I can’t even begin to imagine the heartbreak you are all going through. Writing the blog over the last few weeks has enabled everyone to get to know your family and beautiful Ned, so I thank you for that . It has sent the message about love to everyone and touched so many hearts. The way you have been so honest and have opened up your heart is truly courageous and if this has been your way of coping then I salute you. Clare and the family have been incredibly strong and I hope as you look back at this blog you will realize the courage and strength that you have shown too Andy.
    It is a comfort to know that Ned’s passing was so peaceful and I hope this can help a little in your grieving. Like you say he will always be with you all in your hearts and thoughts and his spirit will be around you and with you always. You are an amazing family , full of love and I pray for you all as you continue to get through each day .
    Much love

  24. Hugh & Hanneke (FUF's)

    Andy your way with words is at the same time truly inspirational and devastatingly able to convey such depth of feeling. You have put into words some of the feelings I (Hugh) had at the loss of a child but have never been able to express. I have been unable to find words to really say what I felt at that terrible time, but you have amazingly done so. Bless you. I salute your courage to share so much with us all and so fully.
    You have all been in our thoughts and prayers so very much over the last two weeks and we will continue to pray for peace of heart for all of you.

  25. Jools

    Thank you, Andy, for the privilege of sharing Ned’s, and your amazing family’s, journey. I don’t know you in person, but you, Clare and Ned have become very precious to me and I send you, Clare, Alice and Arthur all my love, to support and uphold you in the coming days, weeks and months.

    Ned has touched many lives, through your voice. Thank you.

    Jools xxx

  26. Diane Berry

    Dear Wheatley family
    Your darling boy will not be forgotten. We have so many wonderful memories of him here at nursery. Bob & I send our love and sympathy to the whole family.

  27. Natalie Baird-Clarke

    Your beautifully written and achingly sad account of Ned’s story has captivated me wholly and I feel I am changed as a result. Love really is all there is.
    I think of you & Clare all the time and pray that you both find the strength to get through these darkest of days. I am just so sorry.
    Sending all my love,
    Natalie xxx

  28. Nicky

    As a family, your love, courage, and strength through these unimaginably traumatic circumstances has been, and continues to be, utterly amazing and inspirational. We are all here for you, aching to help ease the pain and grief in whatever way we can, when you are ready. Nicky, Julian, Hannah & Christopher x x x x

  29. Will S

    There are no words that can dull the pain or ease the loss.But, you should be proud of the fight that Ned put up, even when the odds were stacked against him. You should be proud that your son could muster an army of followers old and young whose first thought in the morning and last thought as night was of your precious Ned. But, more than that you should be proud of yourselves. The only reason that he put up such a hard fight was because of the love that you showed him. The only reason that people feel compelled to post here is because you shared your journey with us. The only reason people shed tears for the passing of a boy that many of us never met is because of the dignity, compassion and emotion that you have demonstrated through a journey that no parent should ever have to embark on. Ned acted as the cause, but Andy with your words you led the army. My thoughts and prayers are with you all.

  30. Kate and Pippa

    I have been trying to find some words but there are no words. Thank you for sharing Ned’s Journey with us all. Still thinking of you all at this very difficult time

    Love Kate and Pippa xx

  31. Rowena Angell

    Crying a lot as I get to the end of reading this……what a wonderfully eloquent testimony to suffering and love and the bravest of decisions. Unimaginable and yet vividly coherent in the explanation…so honest in the pain….so courageous in the decision to share…..small crumbs of comfort I’m sure but thank you for doing so. We have faced such circumstances and doubt our ability to cope as you have done had Harry not survived – he has, but your story and courage has touched our very deepest emotions …I wish you acceptance and peace in knowing you did all the right things…..there are no words left ……..but love

  32. Anita

    It is not difficult to see where Ned got his bravery from – as parents, your courage, love and faith throughout this journey have been truly humbling for the rest of us, no more so than in those final precious moments. My thoughts and prayers are with you as your courage and strength are tested again during this difficult time.

  33. Naush

    Crying the whole way through this post. I can’t even begin to imagine your anguish and sorrow.
    May God envelop Ned and your whole family in His protective love and mercy for all eternity.
    Your words will stay with me forever as we go through our own HLHS journey.
    With my deepest sympathy and condolences.

  34. Katy Brown

    Ned’s journey has profoundly changed me. I will always keep him in my heart. Continuing to pray for you.

  35. Jacqui Goff

    Such a brutally honest and harrowing account of your personal journey with Ned, without doubt the most emotional and moving piece of writing I have ever had the privalage to read. I do not claim to know your family well but my daughter was one of Ned’s friends and I have often chatted to Clare at music monsters or fufs and seen you dropping/collecting the boys from nursery over the past 2 years and it is very evident what a loving close knit family you are. I am so very sorry for your immense loss but hope you are able to draw from the strength that you clearly have as a family unit to help you get through the current dark days and those that lie ahead. Much love Jacqui, (Velvette’s mum) xxx

  36. Valerie

    Dear Andy and Clare,
    When we met your beautiful children in January this year, we knew immediately that you and Clare were incredibly special parents – so caring and fun-loving, with your family as the centre of your world. The happiness and love in your family was clearly evident in everything that the children engaged in whilst we were with you at your Mum’s home. I would have to say that the time we spent with your family, Fiona and my Aunty Bertha (who reminds me so much of my own mother), and then on another occasion, reconnecting with my Uncle David and Carolyn, were definite highlights of our trip.
    Your unconditional love for Ned came through in your story about his procedure. You were so honest, open and always optimistic. We were in awe of your outpouring of emotions which you shared throughout Ned’s journey – from anxiety to elation and finally, resignation – your words so eloquently crafted and carefully chosen.
    It is clear that you have had an ‘army’ of friends and relatives who have taken this journey with you and reading their comments reveals their love, support and concern for you, Clare, Alice and Arthur.
    We cannot begin to, and probably never will understand the pain that you and Clare, and your extended families must be experiencing. You were all so strong and brave and were Ned’s constant support.
    Take time to grieve, stay strong and keep your hearts open to loving each other as you always have. Ned will always be in your hearts.
    Much love from Val, Darrell Evan and Simon and all of your cousins in Australia. We are all thinking of you. X

  37. garry stoner

    Andy, Clare – we cannot really add many more words that have not already been said by others, glowing tributes from so many people every one totally deserved. Andy, your daily updates have been totally captivating, each day we both have prayed for good news before we opened your blog and from a distance shared in each step. You both are truly outstanding parents who over over the last 4 years have faced so many challenges, and now have faced all parents worst nightmare the ultimate truly impossible decision. Yet somehow you have shown the strength not only to make those decisions but to share all of this with your friends and loved ones through the blog. Our thoughts and prayers are with you all and especially Ned, who is now at peace, god bless. Garry and Julie.

  38. Catherine vogelenzang

    Thank you so much for sharing Ned with us. As my grandson faces the fontan in the next couple of years, I realize again, how precious our children are. You have been an outstanding help and encouragement. Ned has touched soooo many hearts. Xxx

  39. Carolyn Eley

    Dear Andy and Clare,

    Thank you for your blog. Thank you for having the bravery and honesty to write it. Little Ned has taught all of us that humans are capable of the utmost kindness, love and compassion. It is our true essence and tragedies like this give us the opportunity to show the world how truly wonderful human kindness can be.

    Ned is now in spirit but he has touched all our hearts and his legacy is monumental. There is no emotional quadrant in spirit, no pain, no suffering, no judgement …. just pure light and love. He and you have been our most poweful teachers.

  40. Mike

    I read this soon after you posted this and I have read it daily since.
    Each tie until today my eyes have watered and I have felt so sad.
    Sad because despite you all being the most courageous of families it was not to be.
    Sad because Ned had a family around him and a group of close friends and an army of people that didn’t know him who were willing him to get better.
    Sad because for such a little man Ned obviously put up such a fight that would have made bigger men proud.
    Sad because it just didn’t go our way.
    Then I thought about the memories that you will all have as a family – sure he is not here right now – but he will never be far – in fact he will be in the most important place that he can ever be and that is in your hearts. You clearly had some good times and despite the awful last couple of days you had him in your life and he had you. He was clearly wanted and loved and when that moment came to say goodbye it was done in such a tender loving way.
    You should be proud of everything you have done and tried to do. It was worth the fight you gave him every chance he could have asked for and it just didn’t go our way.
    The journey it’s not over there may be less physical people in the car- He maybe not with you but he will never be far.
    I do wish you all the best.

  41. Karen

    I have just read your blog from start to finish tonight and I’m in pieces. What a true privilege to be let into such a personal and profound journey written so honestly and beautifully. Thank you. Anything I write seems inadequate but as a mother of a little girl at the same nursery as Ned (I don’t think they shared days though); our very own Edward with experiences of the amazing staff at Evelina and close friends with a little boy with the same condition – I am so deeply moved and can’t begin fathom the enormity of what you have been and are contending with. I am just so sad to read the devastating end to your story. Ned was obviously an extremely courageous little fighter. And the strength and courage and unending love that he experienced through your family is truly inspiring. You couldn’t have loved him more. I hope you can one day be at peace. I will always remember your story and Ned’s amazing spirit.

  42. Emma Urquhart

    Like so many others I have found it impossible to express in words the effect that Ned’s journey has had on me and cannot begin to imagine what heartbreak you are suffering now. If there is ever anything we can do to help please just call.

    Andy and Clare you remain an inspiration to us all, the love and courage you have given to Ned are the reason that he has become the beautiful little boy that will remain in all our hearts. Xxxx

  43. A friend of a friend

    Thank you for sharing so much with us. Words fail me at the moment, but needless to say, may God bless you and your family and give you the strength and courage that you need at this time. May Ned rest in perfect peace and may God bless you all. You have touch our hearts and in our prayers. God bless.

  44. Sandra Pettifer

    Thank you so much, Andy, for taking the time to tell us what happened – I won’t say ‘at the end’ as I’m sure that, with a family like yours, Ned’s Story will never end.
    Like everyone else I read your honest and heartbreaking account with tears pouring down my face – and full of admiration at just how much strength you all (and most of all little Edward) have shown throughout this terrible time. Words can’t express our horror at all you have had to contend with, and the deep sorrow we feel for you now.
    Sadly we can’t say or do anything which will take away your pain and sadness, but if there is anything else we can do that will help in any other way, please let us know.
    Take care, and know that Ned’s army are still rooting for you all, Sandra & Alex xox

  45. Charlie Jones Foundation

    It’s taken me a while to read this. The tears have flowed. The bit where you said you felt his spirit left him made me sob. I am so thankful you got time to say goodbye. That it wasn’t sudden and unexpected like I had. You will analyse every single bit of what happened and that is completely normal, I still do to this day. I wish I could say it will get easier, I wish I could cuddle you and tell you it will all be alright. I wish Ned was still here for you.

    Lots of love xxxxx

  46. Uncle Steve

    Mother Nature was unkind to Ned but by Christ was he blessed to have you both as his loving Mother and Father.

    I am so enormously proud of you both having witnessed first hand the love and care you gave Ned from Birth to the final days when you both displayed phenomenal strength and courage to remain controlled ensuring his “beautiful, peaceful passing” was perfectly orchestrated.

    Ned, along with Alice and Arthur are a credit to you and I love being their Uncle.

  47. Pingback: The Moodie Blog » Blog Archive » Journey’s End and why Little Hearts Matter

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