Moving Forward with this Blog

When I started this blog I had four loose objectives. The first was to keep family and close friends up to date with Edward’s progress; the second was as a form of personal catharsis which became more and more important as his journey unfolded; the third was, sadly, to keep an account that Edward would be able to look at in years to come to learn how he had fought and overcome such a huge challenge; and the fourth was to provide a reference for other families who will have to travel the same path in the future, and to give them hope and inspiration.

Although we knew there was a risk, I never thought that Edward would die. He had survived two far more dangerous procedures. This was, supposedly, the easy one, but sadly he belonged to the small percentage of children who are unable to tolerate the fontan circulation. Even now, 3 weeks later, it seems scarcely believable. The grief has been all-consuming and we miss him so, so much.

However, during our month in hospital, something quite incredible happened. From just a handful of readers in the first few days, there were tens of thousands reading the blog by the time Edward passed away. Plenty of these people, often complete strangers, have sent us beautiful messages of love and support, many of which I read out to Edward as I sat with him in the middle of the night. Every day these messages continue to come. They have been a tremendous source of comfort during possibly the most difficult time any parent, or person, could ever experience.

As I’ve already mentioned, It was always my intention to provide a resource for other parents of children with serious heart conditions to look at for support and advice from a family that have been through it. Just because Edward didn’t make it doesn’t change this – all it means is that my focus has now changed from helping survivors to supporting bereaved parents like us. I have discovered that death at the fontan stage is (thankfully) relatively rare, but this means that there aren’t many other parents with whom to talk and get support from who have experienced exactly the same thing. We know of only one family, through Little Hearts Matter, who have already kindly offered to come and see us and I would like to be able to do the same for others in the future, either in person or through this blog.

That’s why I feel that, despite Edward’s death, I should continue with the occasional post, to address issues such as grief and, hopefully, moving on and getting on with our lives. I want it to be a part of his legacy, to provide love, support and guidance for anyone else who has to travel this path. It doesn’t matter if hardly anybody reads it, but at least it will be here if somebody needs it.

 

11 thoughts on “Moving Forward with this Blog

  1. Norma

    Thought I’d just say Hi.

    I don’t know how you deal with loosing a child; I guess it is only those who have sadly gone through this ordeal , who can have the real authority to speak on it.
    I’m sure you will be the right person to be able to offer support to others ; but please give yourself “time” Andy. Not forgetting other supporting groups for yourselves!!! Forgive me, I don’t want this to sound patronizing and I do understand it would give you a focus .
    I mention this with genuine (and cautious!) concern.
    As you say, there is also a need to move on and get on with living. You and Clare (as was Edward!!!); and your situation is unique. However , all such sad experiences are so emotionally exhausting ; so I say please be careful!!!!
    I remember a very poignant sentence you said, and have just found it in your blog “A painful reminder”:-
    ” As so called” heart parents”we belong to a club that nobody wants membership of.”
    Yes , you did find the strength to offer such kind support to another family, whilst Edward had only just had his operation.
    Now you have tragically found yourselves with another membership; in a much tougher club.
    You will achieve all you set out to; creating a wonderful legacy in Edward’s name.
    Love and best wishes to you all. XXXXXX

    Reply
  2. Kim Rocknean

    Hi Andy
    I, for one, will always read your blogs (even though I struggle to reply to your wonderfully written words!)
    Just want you to know that we are here, supporting you and sending love whilst you, in turn, are supporting those families who have to walk the same path that you did with Ned.
    Kim xx

    Reply
  3. Emma Clothier

    Wow x
    You are such an inspiration! All of you are! What you are all going through should never happen to anyone and we are so, so sorry for your pain and loss! We are continuing to pray for you all.

    But through it all you still show where Ned gained that amazing strength and spirit! God has blessed you with this gift and it’s so wonderful to see you sharing it with other family’s who have been through similar experience’s.

    Bless you all, love and best wishes Emma xxxx

    Reply
  4. Nicky

    Just to say we are sending you our continued love and hugs. Edward brought smiles and joy to so many people during his short life, I am sure his legacy will touch so many more. He will always be remembered by us. Take care and God Bless. Nicky, Julian, Hannah & Christopher x x x x

    Reply
  5. Mike

    Andy –

    I for one come back and visit every now and then and whilst I would never say I understand your pain and I hope to god that I never will, I can only stand in awe and look on at the strength that you all have shown .

    I have read but must admit I have not been able to respond.

    I hope that your words will assist others who also find themselves In the awful moments that you have whatever their cause.

    Ned will never be far from you all – he is in that most important place that he can be right now and that is in your hearts.

    I wish you all the very best that the world can offer.

    Reply
  6. Another friend of a friend

    As a friend of a friend, I have never met you, neither did I ever meet Ned. However, I was asked to pray for him and began to follow your updates, thinking of you all morning, noon and night.
    A parent myself, I have always recognised how precious time with our loved ones is but your heartbreaking and beautifully expressed account of the last few days with your son has etched this into my heart.
    I think of ned everyday, and his legacy is one of the importance of love, and how best to demonstrate it.
    Your words have inspired and will inspire more people than you can ever imagine- not only parents of children with illnesses or those unlucky enough to have been bereaved but also any of us who struggle at times with boisterous , noisy, naughty , bored, cantankerous children, for your story and your loss remind us of how lucky we are to have noisy, boisterous children to deal with.
    As for your continued blogging, we care about you and your family, and we want to know how you are getting on, that you are as well as you can be.
    Warmest thoughts to you and your family. It has been a privilege to be able to share your thoughts and observations.

    Reply
  7. Val and David

    I wholeheartedly agree with your wish to continue writing this blog. Firstly it keeps us in touch with how you and the family are faring and coming to terms with your grief. Secondly it is beautifully and sensitively written and puts into words what others may feel but cannot express. Thirdly, it is a fitting tribute to the memory of a very lovely and courageous boy. I am sure it will be of great help to those parents whose children suffer from the same condition as Ned. We continue to think of you all every day and hope and pray that the strength and love you demonstrated throughout Ned’s illness will stay with you in the months ahead.
    Much love to you all,

    Val and David

    Reply
  8. jo

    Dearest Andy. Thank you for your blogs. Your heart. And your sharing. I treasure that you let us in to such grief and to such life. I am one who prayed throughout and I continue. Often you all lie on my heart an I know you lie deep on jesus’ heart. I will particularly pray for you at bedtimes. Maybe we will meet, me an my son are part of fufs. Love to you all. Jo x

    Reply
  9. S

    Hiya. I firstly want to say how sorry I am for the loss of your beautiful son Ned. I have spent hours reading your blogs tonight and am filled with emotion. I am a nurse on a cardiac ward at Birmingham Children’s hospital, I love my job so much but it is an emotional roller coaster, some days happy, some days bad… and to read through Ned’s story with such a sad outcome is awful.
    I just want to say I am thinking of you both, Ned’s siblings and your family at this sad time 🙁 xx thoughts and prayers are with you all xxx

    Reply
  10. anne marie hennessy

    Thank-you for sharing the loss of your beautiful son in such a moving way. If it brings comfort to other families coping with such a loss, then good will have come out of such a terrible tragedy.
    My son has HLHS. He had his Fontan surgery in September 2005 and although he came out of it alive (just!) , the young boy in the bed opposite, four years old as well, going down the next day for the same op, did not survive it. Our special children are here for a very uncertain length of time and your blog reminds us how precious that time is.
    I hope you find some comfort in knowing how helpful your blog has been to other families who also go through this,
    Sending love and prayers to your family,
    Anne Marie x

    Reply
  11. Emma Urquhart

    Andy and Clare,

    We wanted you to know that you, Alice and Arthur are in our thoughts and prayers.

    Edward is always in our thoughts and hearts, he will never be forgotten.

    All our love.

    Emma, James, Izzy and Millie xxxx

    Reply

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