It was a day that none of us wanted, but it was nevertheless beautiful. 350 people turned up at St John Baptist Church in Cirencester to help us celebrate the life of our little boy. We could not have asked for a better day, and we will forever be grateful to all of you who helped us to make it such a lovely occasion, and especially those children who came in fancy dress. There was a moment during the service when all of the children came to the front to light candles next to Edward’s coffin, to the accompaniment of Firework by Katie Perry and Mah Manah by The Muppets. It was simply lovely.
Friends from all over the UK came to support us, as well as some who flew in from America and Asia, including several old school pals I had not seen in 20 years. We even had a representative from The Evelina, in the form of Francesca, the lovely nurse who looked after Edward when he first came out of the fontan operation. We will never be able to thank them all, let alone the thousands of people who have sent us cards and messages, but I hope that many will read this post and understand how thankful we are.
I will not provide a narrative of the day, as I don’t think I can write about my own son’s funeral just yet, but if anyone else wants to please feel free to do so. If I’m honest, I can’t remember too much about it such was the emotion of the day and I am afraid that in the two days that have since passed our grief has been far more profound than in the days before, making it more difficult than I thought it would be to remember it in any detail. I suspect that the funeral provided a point of focus and distraction for us and the tears have flowed almost continuously since. Saturday was awful, and today equally bad, and I think that this is where the grieving process begins in earnest. I will probably write about this in the days to come, as usual because it helps me deal with it, but also because I genuinely believe that it will help others to learn how to deal with bereaved parents in future. I have learnt an enormous amount about grief in the last few days, obviously, and I’d like to be able to help others deal with it in the future.
In the meantime I have been asked by a few people to post a copy of my address, which is below, as well as the Order of Service which you can download here: Edward’s Order of Service. Our friend Katherine helped to put it together and she did a brilliant job capturing Edward’s personality and spirit.
I would also like to thank everyone who has so far contributed to our fundraising for Little Hearts Matter. It means the world to us that Edward’s life and story has inspired people to give so much. Including gift aid, the total is now around £8500. We never set a target and in fact didn’t dare to expect anything over a few hundred pounds but my dream is now to reach £10,000 for a charity that is so deserving and works so hard supporting families like ours. Please feel free to pass on the link to others who might be interested in donating. The link is here: Edward Wheatley Fundraising for Little Hearts Matter.
We are not here today to grieve. There is plenty of time for that. We’re here to celebrate the life of a very special little boy, our son, Edward John Cardoza Wheatley. That’s not him lying over there either – it’s just his body – so please don’t be too sad. The real Edward left a couple of weeks ago, as Clare and I held him in our arms and surrounded him in love, just as we had for every single day of his life. We brought him into this world, guided him through it and shepherded him out. It was the greatest honour and privilege of our lives and the very least we could do for a boy who gave us so much.
It is a testament to Edward that very few people knew how serious his condition was. He had half a heart. When he was born we wondered what kind of a life he would be able to have, if at all. Well, as it turned out, he had a fantastic one and he stands as a lesson to us all on how to overcome hardship through love, laughter, determination, courage and just a little bit of mischief.
We often play a game in our family, challenging the kids to guess how much we love them. We all do it. As big as a car, a whale, or even a house? Alice and Arthur will always up the ante, saying “as big as the universe” or “as big as infinity”. But Edward would just cut in and, in his deadpan style say, “Stop asking, you already know,” followed invariably by his cheeky little laugh.
Even towards the end in hospital, his humour did not desert him. One afternoon after the first operation, I decided to try to cheer him up. I danced around his bed, read him stories, made funny faces and sang songs. When no smile appeared, I asked him what else could I do to help. His answer? “Please stop singing Daddy.”
He was smart beyond his years. We often joked that if he and Arthur were ever to go into organised crime, he would be the brains and Arthur the brawn. What a pair they would have been.
He loved to dress up, especially in girls’ clothes, usually a princess, or a ballerina. One of his favourites was Stephanie from Lazytown, complete with a silver and neon pink striped dress and a shocking pink wig. Once, he insisted on walking through town in it and going for a country walk. You should have seen the faces of the ramblers and Japanese tourists.
He loved and embraced technology. I have never seen a 4 year old so at ease with an iPhone or iPad. Whenever one was missing, invariably his Uncle Tom’s phone, you could be sure that he had taken it and was busy hiding somewhere watching Barney on You Tube.
He loved food and cooking. He would stand on a stool by the AGA with Clare, mixing and stirring and occasionally making something indescribable but incredibly tasty, like his pie with no pastry. When we poured out his Rice Crispies in the morning and asked how much he wanted he would holler “As big as a mountain!” Even in hospital, when he knew that pretty much every food item he wanted was off the menu he would ask for pizza, bagels, boiled eggs and, err, cous cous. And I am sure that many of the nurses will remember his complaints about the amount of water he was allowed. “I don’t want little water,” he would say. “I want big fat water.”
He just loved life and people, and it was apparent in everything he did, from the way he adored going to Mrs Berry’s Nursery and Friday Under Fives to the shrieks of joy he would give every time somebody he knew knocked at the door. Perhaps his greatest love was babies, which we first discovered when he met his little friend Cameron and which burst into life when his beloved cousin Lois was born just a few months ago.
It was Edward’s gift, to love and be loved. Its foundations 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 and the best wife a man could ever have. It’s a love that accommodates everything, from the sharing of joy to the closing of arms around you in the depths of despair. It’s the kind of love that gives you the strength to turn off your child’s life support and then sustains you through the unbearable pain of their death. Thank you John & Jenny, and thank you too to my own family whose love and support has given me so much strength these past few weeks. We are going to need a lot more of it in the weeks and months ahead.
Love is Edward’s legacy. Even as his own death approached he was able to show it to us. Just minutes before he died, as Clare cradled him in her arms, I leant down to kiss him. It had always been a game of ours – I would kiss him and he would say “yuck” and wipe his face. But this time he kissed me back, even after everything he had been through. I will never forget that kiss for the rest of my life.
So, I ask you, in Edward’s memory, to not let this day pass without promising to love your partner, parents, children, and friends just a little bit more than you did before the day began. 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 love will carry you through even the hardest of times. I doubt that there is anything harder than losing a child and I know that life will never be the same again, but with the love and support of our families and friends we will get through it.
Along with my wife Clare, our children Alice and Arthur and our families I would like to thank you all for making the effort to come here today, especially in such numbers. A few weeks ago, Edward, fed up after yet another round of blood tests which he hated with a passion, was asked by one of the doctors if he was ok. He replied, simply, “I am not impressed.” I’m sure you can imagine exactly how he said it. But you know what? I think he might be just a little impressed, and somewhat amused, by how many of you have turned out to celebrate his life today.
I’m going to finish with a short poem that one of our friends sent to us. It’s called Afterglow, and sums up, for me, how I would like Edward to be remembered.
I’d like the memory of me to be a happy one
I’d like to leave an afterglow of smiles when life is done
I’d like to leave an echo whispering softly down the ways
Of happy times and laughing times and bright and sunny days
I’d like the tears of those who grieve to dry before the sun
Of happy memories that I leave when my life is done.
I think we can all agree that Edward achieved this and much, much more.
Clare and I are enormously proud to be standing here in front of you as the parents of a boy who, in his four years, had such a profound effect not only those who met him, but also the tens of thousands of people who followed his progress during the last few weeks of his life.
He showed us courage, brought us joy, laughter and love. He was, and will always be, a wonderful son, a beautiful brother to Alice, the beloved twin of Arthur and an adored grandson, nephew, cousin and friend. Our lives will never be the same without him but they are richer because of him and he will be in our hearts forever.
Thank you Edward for blessing us with your life. Rest in peace, our beautiful, brave, handsome boy.