Grief and Love

Unlike previous posts, I thought it best to precis this one with a quick explanation. It is, as the title says, about grief, so may be sad to read but it is also about hope and love. It’s not a cry for help or an attempt to gain sympathy – we have plenty of that from our family and friends – but it is in keeping with the style of this blog so far and is simply a reflection of how I feel. Furthermore, people keep saying to us, nicely, “I don’t know how you feel but…..” Well, I hope that this helps.

I took over 400 photographs during Ned’s month in hospital. They’ve all been on my phone, from the happiest of images as he enjoyed a ride with his mum on the carousel the night before his fontan on July 4 to the very last one I took straight after that fateful and unsuccessful emergency operation on July 26. I will never publish that final photo and didn’t take anymore after that – once we knew he was dying it was time to be with him through his last moments physically, emotionally and spiritually. The photos are a graphic journal that tells a story that starts with expectation and hope but unravels into desperation and, ultimately, despair. Yet, I am so glad that we have them. They are difficult to look at, and always will be, but they are the truth, and truth must always be confronted and accepted. Nothing can and ever will change what has happened.

Having spent time every day looking at these photos, I decided last night that it was time to move them to a folder that I will not access for a while. I will keep all the ones of the happy times before the fontan, but these pictures need to be hidden away for a while so that we can start the long process of moving on. However, whilst transferring the photos, I noticed that my laptop screen was dirty – the result of a month in hospital and tapping away on the keyboard in between quick snacks and looking after Edward. One of the marks on the screen is the clear impression left by Edward’s little lips, pursed as they were, to kiss his brother and sister at the end of the last video call we made before his operation. I have not yet been able to bring myself to clean it off. I will do soon, but I can’t right now. What could be a more appropriate memento of a boy who symbolised love than the mark left by his kissing lips?

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Edward’s flowers are still in the church but won’t be for long

One of the most difficult emotions has been guilt, which reared its head within hours of Edward’s death. How could we – the people who loved and adored him – put him through those awful final two weeks of his life? I know this is irrational. We did it because we loved him; because without the fontan he would have eventually died anyway, and it was his only chance of reaching adulthood. But I cannot help but pick through the events leading up to the final week. Did we do it too early? We know we could have had a few more years with him but followed advice that this was the best time. Did we, or the doctors, miss anything? Did the delay in putting in his central line cost him his life? Could we have changed the outcome? Don’t get me wrong, I don’t blame anyone but it is just human nature to pick through the mess looking for answers. Worst of all, I remember the immense pain he was in Savannah Ward before he was re-admitted to PICU. I remember Clare and I helping the nurses to encourage him to walk through his pain, because it was what we were told we needed to do. He cried so much. As his father, I wish I could have taken that pain for him and I feel awful because of it.

Another is emptiness. A huge part of our lives has gone. We were five, but are now four. Yes, he is in our hearts and memories, but he is gone in any physical sense. Forever. However noisy the house is, it feels silent. Every morning two pairs of feet come down the stairs for breakfast and we yearn for one more. There is always somebody missing every time we sit down to eat, every time we get in the car, every time we do anything as a family.

Disbelief surrounds us. How can he possibly be dead? The fontan has a 95% success rate. He had survived far more difficult operations. He was the strong one, the one who could beat anything, the one who gave me the ability to face all that life threw at me, because it was nothing compared to what he faced. He was my hero. At the crematorium there was a sign on the door, saying ‘Service for the late Edward John Cardoza Wheatley’. It looked and felt wrong in every way. It still does. I look at the hundreds of sympathy cards we have received. It is hard to believe that they are for us but yes, they are. We are the family we used to read about and feel sorry for but be secretly thankful it wasn’t us. Today we are, and always will be, the ones that have lost a child.

There is a great sense of injustice. An innocent little boy, who gave nothing but love, gets four years, whilst some of the vilest people on Earth get a lifetime. Today, we went to the Yorkshire Sculpture Park. The sky was blue, there was a gentle breeze and we had a lovely time but these experiences are now denied to Edward. I walked alone for a while, wishing he was beside me, raging inside at the unfairness of him missing out.

I feel lost without him. I love all my children equally, but Edward’s condition was a huge focus. I changed the way I work to be able to spend time with him and had planned the next 10-15 years around getting him through the fontan, his teenage years and eventually a transplant as a young adult. These goals have been extinguished. We miss giving him his medicines, worrying about him, carrying him when he got tired and planning family activities and holidays that he could participate in fully. They were never an inconvenience, they were a labour of love.

Perhaps worst of all is the longing. We ache to hold him, kiss him, tickle him, smell him. To hear his laugh. To see that funny walk of his and the way he always had two fingers in his mouth. We will never experience these again. They are consigned to our photos and memories forever. Strangely, it is sometimes comforting to feel this pain of longing, because it means we haven’t forgotten him. We will never forget him, but we want to think about him all the time despite the pain, because it’s the only way to get keep close to him.

Together these emotions, this grief, present a considerable challenge, but we are not shying away from it. In fact, I am doing my best to embrace it, by letting it flow through me as much as it needs to. I have dealt with it by confronting it head on, accepting every emotion as it comes, and have been, on occasion, on my knees or doubled up on the floor in pain trying to come to terms with it. The alternative would be to deny it and invite even more problems in the years to come.

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We have lit a candle for Edward every day that we have been in Cirencester. Here’s Arthur with his.

Our children have been fantastic. Arthur has grown up more in the past month than at any time in his life and Alice, being more aware of everything, has been a great source of comfort despite her own sadness. She has seen her parents cry more times than any child should, but still she comforts us. Last Friday, before we left Cirencester to come up to Sheffield, I went with her to see Edward’s flowers in the church one last time, knowing that they will be gone by the time we return. It was yet another goodbye and I lost it completely, but Alice held on to me and sat by me until I had composed myself.

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Alice, after looking after me, stands by the candle she has just lit for Edward

And what can I say about Clare? What a wife I have. I remember looking at her at the funeral and thinking how beautiful and elegant she looked, even on the saddest day of our lives. Neither of us have been here before, so we don’t know if we’re handling it the right way, but we are always talking to each other, sharing our feelings, our tears and our grief. We talk openly about Edward with both Alice and Arthur and we are determined that he will play a significant role in their lives as they grow up. When they are ready, probably many years from now, we will let them read this blog and view the pictures that I have just filed away. Unlike us they were never able to say goodbye and we protected them from the pain of the final two weeks, but they have every right to know what happened to him.

Life goes on, and it must. No matter what happens the day before, the sun will always rise in the morning. It is something that I have always said to comfort myself in times of trouble, to keep my spirits up and provide a focus for not giving in to whatever hardship presents itself. But today it is harder than ever, for this is a new kind of trouble that none of us really knows how to handle. Life as it was will never return but that doesn’t mean we won’t be happy again.

That said, the fact that life must go on does present a painful contradiction. Friends send us their honest and heartfelt condolences and then follow it up with a post on Facebook about how great their holiday is and a picture of their happy family. It’s not intentional, and I know that it must be this way, no matter how much pain it causes. It is the fact that life goes on as normal for everyone else that will eventually help life re-start life for us. The world must not stop or wait for us. We need to catch up with it, no matter how hard it is or how long it takes.

We have no immediate plans about how we are going to do this. It’s easy to forget that it has only been three weeks and we have been told many times that we must not make any major decisions about our lives for a while yet. It’s impossible to be objective right now so we are taking every day as it comes. In three days time it is my birthday, and three days after that it is our wedding anniversary. They are going to be tough, but after that we will be in Cornwall for a few days to get some time together and get used to the new dynamic of being a foursome.

Last weekend, I came across an article by the author John Niven in the Style section of the Sunday Times. It was called ‘Love Survives’ and I’d recommend it to anyone. It’s about the heartbreak of losing a family member but it is also about hope, the future and love and reminded me so much of the point I was trying to make in my address at the funeral. Two things in particular caught my attention. The first was a quote from Martin Amis, who said, simply “Grief is the price we pay for love.” Well, Edward was and is love. He filled our lives with it and I understand now why our grief is so deep. However, unlike Amis, I don’t see it as a price to pay or a sacrifice, but as a badge of honour that symbolises the privilege it was for Clare and I to have been his parents.

The second thing was an excerpt from Philip Larkin’s poem, An Arundel Tomb, the final line of which is “What will survive of us is love.” How appropriate in our time of grief, caused by immense love, is that line for Edward, whose great gift it was to love and be loved? He may be gone physically, but the love he gave us illuminated our lives and will change the way I live my life from this day forward until the day I too die. I am so proud of him.

10 thoughts on “Grief and Love

  1. A fellow heart parent

    Hi Andy – I’m a stranger to you, and I know that what you are going through can’t possibly be understood by anyone who hasn’t gone through the same thing, but I just feel compelled to write a few words after reading your very moving account of your grief.

    I just wanted to say I understand about your feelings of guilt; my son almost lost his life through a non-complicated but undiagnosed CHD and was subsequently poorly for a couple of years, and for those years (and still now a little bit) I blame myself and feel guilty for not noticing how ill he was or that there was anything wrong with him. I know that no matter how many people tell you not to feel guilty, you still do. I just wanted to say that reading your blog and following Ned’s journey, there is nothing you and your lovely wife did that I wouldn’t have done….you have nothing to feel guilty about. You have to take the advice and put your trust in the medics around you, you have no choice, and they obviously did everything they possibly could and made their decisions based on the facts as best they could. You absolutely made all the right choices and decisions, in fact you both made the bravest of choices all the way through….and still are making them. Your love for your beautiful boy is palpable. I don’t know if that’s any comfort at all.

    I know that there are lots of people who never had the pleasure of meeting Ned but think of him every day (myself included) and strive to be better parents because of you sharing your private experiences, I feel very privileged.

    Again, I don’t know if that is any comfort at all, I just couldn’t read your post without writing something.

    My thoughts are with you all.

    Reply
  2. Another friend of a friend

    It won’t help much at this moment in time I know, but he is with you all whenever you talk about him, remember him or even imagine what he might have thought or felt about a funny moment you enjoy together. There is that poem about only being in another room ; I’m sure someone would have sent it to you but if not please look out for it. It may eventually help to dull the ache in your soul.

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  3. Pippa Young

    Thinking about you all lots and lots. I think you do just have to let the grief flow – allow yourselves, unconditionally, to think and talk about Edward, to look at all of your photos of him with his properly wonderful smile, to remember him and re-live the feelings of love and pride he gave you every day of his life. I have often thought that perhaps what constitutes a person is not really within them but in everyone who knows or knows of that person, has interacted with them, watched them, touched them…as everyone has a slightly different way of seeing and sees different things then each of us is so much more than the sum of our parts. Edward’s spirit is in all of us….so so many…and this beautiful small person lives on in our hearts and minds and will never be forgotten.
    Love to you both and Alice (so moved by what you wrote about her – so lovely) and Arthur.
    x

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  4. Linda Ferstendik

    Dear Andy and Clare,

    I’m a friend of Pippa and Mark and it was through them that we learnt of your tragic loss. I think that the cruelest thing in losing someone you love is the finality of it. You keep thinking that they will walk through a doorway, that you will hear their voice and it never happens. You must try not to feel guilt as I’m sure you and your medical team did all you could for Ned. I have just read your touching blog and looked at the photos of your lovely children. I have three grown up children and the years pass so quickly. Enjoy them to the full and try to cherish the good memories you have of little Ned. You are right, life goes on around as normal and at the moment you can’t see that it should. I feel for you and your family but you will always hold a place deep in your hearts for Ned and the pain will ease with time. I wish you and Clare that inner strength to cope with your loss during the days ahead. Thinking of you

    Linda x x

    Reply
  5. A friend of a friend

    We don’t each other, I’m also from Cirencester and have a young family and I just wanted to send my thoughts to you. I first heard of Neds tragic story the night he was having his final operation. I have thought of you all many ,many times, wondered how you felt, were coping, were even managing to carry on. You are obviously wonderful parents and have wonderful beautiful children. Having never experienced this I can’t imagine how you feel, but I just want you to know that there are people out here, that you don’t even know, who are thinking of you. The pain must be so hard to bear right now, but I’m sure your open honest approach is a really healthy one and a real example to to Alice and Arthur. Feel no guilt you and your wife loved Ned with all of your hearts and cared for him as well as any parent ever could. One day you will be able to remember your happy times with Ned properly. In the meantime hold those dear children close and let your family’s love carry you through. Thinking of you all.

    Reply
  6. Lizzie Dinsdale

    Dear Andy and Clare,

    Anyone who ever saw you, Alice, Arthur and Ned together could see a family bound together with love and laughter, I have lovely memories of you at Naomi’s wedding, and this is what I hold on to.
    Reading about the what you have all been through has been heart rending, yet has shown how strong your love for each other is, and how it will continue to guide you through this time.
    Hold onto each other, hold onto others, cry together and laugh together and continue to be the wonderful family that you are. Ned will always be with you , and with all that know you as a family.
    Love to you all
    X

    Reply
  7. Naomi

    Dear Andy and Clare,
    Amelia and I are thinking about you all. Amelia always lights a candle for Edward.
    You are in our thoughts and prayers every day.

    Love to you all,

    Naomi and Amelia Prince Xx

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  8. Melissa Pittock

    You, Clare, Arthur and Alice are in our thoughts so very often. Charlie is saying how is wanting to have lots of fun with Arthur at school and Harry wants to play Thomas games at playtime. You’re doing amazingly….talking openly is the best you can do. Your writing helps us to know how you are feeling and I hope you coped with the first set of big events without dear Ned…It is not comparable in many ways at all but I lost my first husband suddenly when I was 29 and then my father to Motor Neurone Disease the following year and can relate I think in some way how you feel with the first passing of any important event without them…..it is truly tough but the second, then third and fourth and so on does hurt less each time. Keep strong, Melissa x

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  9. Suzie

    Thank you Andy for your wise and honest words. It has been a privilege to travel with you through your Blog and the story of Ned and your family. These last words are so evocative of the words of the many families that have told me of their thoughts and feelings when they have suffered a loss like yours. Many of them have asked me to express their thanks for your story and the words about how you Clare, Alice and Arthur are feeling your way forward. It has helped them feel less alone. Other families who are still faced with the journey with their sick children have also expressed their thanks because it reminds them how lucky they are. As you all move back into a more structured life Ned will always be with you, if not the noisy little boy he will be there on your shoulder guiding you, supporting you and most of all loving you all.
    As always our thoughts are with you and we are here if we can help in any way. With love from Suzie and everyone at LHM

    Reply

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