No parent should have to bury a child. Sadly, I did. I knew almost immediately after Shaun was born that it was just a matter of time.
There were many occasions I thought it was the time, but in the seventeen years I had with Shaun I got to spend my life with the most amazing and uplifting person I have ever met . . . and am ever likely to meet.
Shaun was born with a death sentence called CHD – congenital heart disease. Life threw him a curve ball, and he batted it away with an amazing spirit. It was, in his words, an awesome ride and I’m pleased I was on the ride with him.
This book is as much about my journey as it is his, and that means it is two books in one. There is Shaun’s part of this book, the original An Awesome Ride, which was first published in 2012 in the months after his passing. Then there is mine, which took me more than five years to get down on paper. We’ve included both stories here because it’s impossible to separate them.
Who knew that Shaun would become a hero to CHD kids and an inspirational teen around the world, assisting in thousands of teenage suicide preventions, with his positive words and courageous outlook on this journey we all share.
My life has never been easy. I have faced many challenges, but thanks to Shaun I know they have all made me a better person. As he would say, live life to the fullest, and that is now what I’m trying to do.
‘Hi guys. I have some bad news I want to tell you all. I have chronic heart rejection and I won’t be here for as long as I thought. But I want to say this has been an awesome ride.’ That’s what I said in my YouTube video that started this whole thing.
Two minutes fifty-four seconds was all it took. I put the iPhone down the end of the bed and just let it rip. Wish I’d remembered to put a shirt on . . . I can’t believe I didn’t think of that. People are saying all kinds of stuff – that I look about ten years old – and am I for real and things. To be honest I wasn’t thinking all that clearly. I had this idea of doing a video to say my final goodbye to my friends and family when I was lying in that damned hospital bed. I never thought it’d go viral.
It’s funny what people find interesting. So much of my life has been spent surrounded by doctors and nurses. Don’t get me wrong, they’re great – they’re the reason I’m still here – but like a lot of sick people all I ever dream about is never having to see the inside of a hospital again.
My name is Shaun Miller and I live in a house in the Melbourne suburb of Mill Park with my father, Cameron. I’m seventeen years old and proud of two things – my dad and my football team, the mighty Essendon Bombers. Make no mistake, I can tell you now it’s going to be a battle to get to eighteen, but boy am I going to give it my best shot. You see, I’ve had not one but two heart transplants and was doing okay until around the beginning of 2012 when things started sliding for me.
I had to go into the Royal Children’s Hospital for a biopsy, which is one of those procedures where they take a tiny piece of you and whack it under a microscope. It wasn’t good news. I knew just from the way none of the doctors and nurses would look at me. One of the specialists asked to see Dad. They didn’t want me to know about the results. They asked Dad not to tell me. They just wanted me to get on happily with life as if everything was normal, but Dad disagreed.
‘You know what?’ he said. ‘I’ve always been open and honest with Shaun. I want you guys to tell him.’ That’s when they came into my room and told me the news that my body was rejecting my transplanted heart. Chronic heart rejection. There was nothing they could do for me.
‘How long has he got?’ I heard Dad ask.
The surgeon thought about it and then said, ‘Between one and twelve months, I guess.’ This was 16 April 2012. Straightaway I worked out that my eighteenth birthday on 23 January 2013 was nine months away. Would I make it?
Suddenly I heard this huge thud and realised that Dad was on the floor, out cold. Poor old Dad had fainted – which later on we had a good laugh over – but I guess my doctor was wondering if he’d had a heart attack. There was a bit of a commotion with nurses rushing in and stuff.
I felt sorry for Dad. Because I’ve cheated death many times I kind of knew it was going to come to this, so I’m just going to roll with it. I’m not sure how Dad’s going to cope. One day soon afterwards, he was looking sad. I could see the news was getting to him.
‘Come here, Dad,’ I said, and he was probably thinking I was going to give him a hug. Instead, I slapped him on the face. Whack! It had never happened before so he was real shocked. I was just telling him to pull his shit together.
Being told by the doctors that I’m going to die soon and there’s nothing more that they can do to help me is by far the hardest pill I’ve ever had to swallow. And believe me, I’ve had my fair share of pills. I don’t really know how to explain it. It’s not like I didn’t know I was living on borrowed time all my life, but I guess that’s how it is for all of us. It’s not like we can hang around forever. We all know it’s going to end – we just kid ourselves or something.
That’s when I had the idea, lying in that hospital bed, that somehow I had to tell all my friends what was going down – and in the months I’ve got left maybe we could do some crazy stuff. I wanted to say a proper goodbye to all my friends, but some of them live far away – the other side of the country; even the other side of the world, like my friend Sondra from Alabama.
At first I was going to type out a message on Facebook but I don’t really like writing all that much. Yeah, I know, so the guy’s writing a book – work that one out. But I prefer talking because I find I can express myself better that way.
So when I told Dad I wanted to do a video and upload it on my Facebook page, he was dead against it. ‘Don’t do it, Shaun!’ he kept saying. I think he was worried I might say something embarrassing or freak people out, but I explained that even though the doctor said I might have up to a year, I might only last a week. It was important to me that I could say goodbye to my friends and family and tell them what was happening, without having to explain it over and over and answer a billion questions about how I’m feeling. I wasn’t after sympathy. That’s why I said, ‘Please don’t cry for me. I’ll be okay.’ And I wanted to tell everyone about my girlfriend, Maddy.
None of this made any difference to Dad – he still reckoned it was a dumb idea. Too bad. One thing about living on death row, so to speak, is that you can take no notice of your parents and just do what you like. And that’s when I went to my bedroom with my iPhone and said goodbye.
It’s not a very long message, but I said everything I wanted to say: that I had no regrets, that we should all live life to the fullest, because you never know what’s going to happen, and I asked my family and friends to make sure my dad will be okay after I’m gone. Done.
When I talk about living life to the fullest, I don’t mean all this YOLO stuff – You Only Live Once – partying and acting cray cray 24/7. It’s not an excuse to just let loose and do whatever. It’s about expressing your love to the people around you every single day. If you love someone and you haven’t told them, then do it, because life is short. Living life to the fullest is about never giving up, and carrying on even if you’re sick. It’s about giving everything your best shot and not holding back, because there might not be a tomorrow. Live life how you want.
When I finished recording the video, I logged onto Facebook and pressed the ‘upload video’ option. Waiting, waiting, waiting. The status bar popped up but it never budged from 0 per cent. It was taking so long! I tried closing it and starting over again, but in the end nothing I did could get the video to upload. As you know I’m on seriously borrowed time now, so I was getting a little impatient.
That’s when I thought of YouTube, because watching videos is what people really use the site for. I didn’t have a YouTube account, so I signed up for one. It didn’t take long. I just chose a user name and password and was able to upload the video within five minutes. I thought I did it right – it seemed pretty simple – but I wasn’t quite sure because I’d never used YouTube before. I went to sleep hoping I’d uploaded it successfully and that my friends were able to see it.
The next morning I woke up to find more than thirty missed calls and messages on my phone. This got me worried that something horrible had happened. Had someone I know been involved in some accident? But the first text mentioned my goodbye video. I jumped straight onto my computer to check if my video had uploaded. I couldn’t believe it. It had gone viral with over 30,000 hits. Within a week it was nudging one million views.
With all this happening, me and Dad got to talking about what we were going to do – meaning, of course, what did I want to do with the time I had left. ‘Okay, three things,’ I told him. ‘Number three: let’s you and me go to Disneyland in America. What do you say?’
‘No problem,’ he said. But I saw a familiar frown on his face.
‘Can we afford that?’ I wanted to know.
‘Well, we’ll think of something,’ he replied.
‘So, the second thing I want is to have a mega kick-arse party somewhere. We’ll invite all my friends and have the time of our lives. Yeah?’
‘Sure. That’s easy.’
And my last wish, my number one thing, was to write this book, to tell you all the story of my short life to date. It’s like, you know, ordinary on the outside, but so many special things have happened to me which can’t be just coincidence, and some pretty amazing people have popped up on my radar. I hope when you read my words they bring a smile to your face and somehow maybe I’ll leave behind a footprint in your heart.