8 years ago, my Mum came into my room at about 1:30am, her eyes filled with tears, I struggled to go to sleep as it was that night, so to be woken to not long after drifting off, I knew what she was about to tell me and I didn’t want to hear it.
I cried myself to sleep.
I woke thinking it was a dream, a nightmare, not a dream anyone wants to have. But I was quickly reminded it wasn’t a nightmare, the unimaginable happened, my little man was only a few months shy of his 21st birthday when he took the last few breaths of life.
The call came for his second lung transplant, I was at work when I was told the news, I remember scrolling back through the weeks of daily emails between us, just to remind myself of the exciting things to come for Dan as life was about to give him a second chance. I was contemplating booking flights immediately over to be there for when he woke up from the surgery, but knew the reality of being allowed to see him was a slim chance.
I held of and brought a pair of lungs in the form of a cushion. I was going to get embroidered on it the date of his transplant…finally! Almost a year of waiting.
Sadly, the donor did not pass away in time in order for Dan to receive the lungs, the surgery didn’t go ahead. The staff had prepped his body ready for surgery and he had gone through so much, he was tired, his body was exhausted and after the build up, he wasn’t strong enough to continue.
Loosing Dan effected me more than I ever led onto anyone. He and I shared a special friendship, he was like a little brother to me. We spoke about everything and anything, he loved my crazy stories or boring screen shots of toasters I wanted to buy, he was stuck in a hospital room with nothing going on, so i would send him emails from work, all day.
Seeing someone suffer from something when they have no control over the future is heartbreaking. Dan was desperate to get better, he wanted to walk properly, build some muscle, start a life with his wife to be and most importantly, he wanted to be healthy.
Death is one of the things in my life that I push aside, so many have passed and it never gets easy. As I remind myself of it being 10 years since he left us, my heart still breaks.
His funeral, I was asked to give a speech. Never did I imagine doing this. I remember saying goodbye to Dan before the service began. His hands were together, his fingers interlocking, he had a suit on wearing his green shirt – i had never seen a “dead” body before. I fell to the ground as i saw him laying there, he looked peaceful. I left my lung cushion tucked under his side, that to date will always be one of the hardest things i have done.
Standing in front of hundreds who came to pay their respect, it angered me – Dan was not meant to die. Someone upstairs got the wrong memo and took someone who was not meant to go….
I couldn’t think of any other way to reminisce so I have included my speech below that I read. As well as a short video Dan had made whilst he was very much alive and breathing.
Don’t take life for granted or those who you love – cherish every moment, time is precious
I have done many public speaking events over the past few years, this by far is the hardest one I will ever do, not one that I ever wanted to have to do.
I am so pissed off that I have to stand up here and say goodbye, it’s not fair, but I know you’re in a better place now and that gives me the strength to stand here and talk about you.
It all started down the yellow brick road… the memories will forever be in our minds and the special bonds and friendships made between us all, will never be replaced.
It was only months ago; Dan and I were reminiscing about the good old days when we were kids. Unlike most children we spent out childhood inside the walls of the Women’s and Children’s Hospital, Colton ward… we were laughing at the mischief we all got up to and somehow always got away with.
From the phone calls to radio stations telling them we were sick kids and bored in hospital leading them to organise day trips for us to Friday dress up days where every Friday you got to choose an outfit for the day wear it all day in character, the most memorable for me was when Dan got married as a 6-year-old.
Using the yellow brick road as a crick field… well having the stumps either end of the ward and attempting indoor cricket.
Despite the needles, the daily treatment, and the germs we shared without chunky flehm, it never seemed to stop us from living our lives to the fullest…in hospital.
Dan was laughing about one memory in particular, he was with his CF “Boy crew”, they used to watch the nursing staff enter the code into the drug room and when they weren’t around would sneak inside and steal syringes so that e could all have water fights on the ward, most of the time the staff being the target.
Even at the toughest times as kids, we had our families there, but when your only 8 years old and sharing a 2-week hospital stint with other CF Children you could only imagine the bonds that were shared between us all. From having a nasogast4roc tube put down your nose to having a new drip on your arm, having the support of each other got us through these times.
Cystic Fibrosis camps were another strong happy memory we could always talk about. The summer week in January where we would go down to Victor Harbour for the week. All having our own camp leader to look after us for the week, they would give us endless shoulder rides and piggy backs, but where also there to make sure we did our treatment as well as having fun.
It was one week of the year that we weren’t in hospital together and could run amok and run amok is exactly what we did.
After the first lung transplant, Dan and I rekindled our friendship, the bond we shared no one will ever understand bur I know it was special, he became like a little brother to me, we spoke a lot through email and texting whether it was about his pick line snapping and going back into hospital to have a new one, or to tell me all about Ursula, that was one story he never got tired of telling. How they met, how he fell in love with her, each time there always seemed to be an extra detail he missed to tell me.
In the past year when he became sicker and hospital become more like a home to Dan, I began to visit him when I could. I would always ask if he needed anything, and it was always the same, either Hungry Jacks, McDonalds or Chinese food…. Now who am I going to eat satays and drink ice coffee with ?
We would talk about everything he wanted to do when he was better, what he wanted to see, where he wanted to go and how once he was well, he would spend the next few years making it up to Ursula.
Dan became frustrated that people stopped seeing him like they normally would. Life goes on for everyone else, but he was still at home sick and when you’re sick all day at home after 2 weeks, each minute feels like an hour.
The excitement in his face when I’d walk into the lunge room to visit him was priceless, his eyes would light up and he’d always greet me with his famous “Hello Love” He absolutely loved having a visitor, even if it was for an hour or so, it meant the world to him.
Eating Chinese food and drinking Ice Coffee was a regular favourite for us, although we had planned the next time to try something different and I was to bring him a piazza, which we never got around too.
I remember one Friday evening he was in a bit of pain, his oxygen tubing was just part of his face now, he looked uncomfortable, he had lost a lot of weight and I was so frustrated there was nothing I could do to make him better.
I thought it would be funny to make a suggestion to take away the pain and to make him eat a lot, I would make him a batch of “special chocolate fudge brownies” after both of us getting excited and planning all the munchies wed eat and the movies wed watch, Dan said to me, “Em seriously, it’s a great idea, but what if I get the call? I will have to apologize and tell them I’m stoned and can’t go ahead with the procedure. I have only been waiting 7 months but hey” There was an awkward silence between us but soon after we thought it was hysterical.
When I left Dan that night I drove away in tears, it hit me. He is literally living his life minute by minute and can’t do anything about it.
Underneath his gastrostomy button, his pick line his oxygen tubes and what seemed to be hundreds of pumps, it was still my little Daniel.
Dan wanted to get back to DJing, playing cricket, he even wanted to go to TAFE and finish studying and most of all he wanted to marry Ursula.
Travelling was right up there too, he had plans of where he would go once he was allowed to fly again…America and Europe being his priority.
Earlier this year Dan started to become frightened of what lay ahead of him, the fear of the unknown we called it. He hated seeing what his family were going through because of him, he felt so guilty, he didn’t want to be a burden, which I made sure he knew he wasn’t.
Dan would email me with things that were upsetting him and things he was scared of, which broke my heart, I couldn’t do anything but be there for him and let him talk, he didn’t want to scare his Mum, his family or Ursula with his fears, so I made sure he knew it was ok to tell me, he had good days and bad but helping him look to the future and making plans for life for when he was well, gave him so much hope and determination to keeping holding on and put up one hell of a fight.
Moving to Melbourne was the best thing for Dan, he emailed me the week before telling me he didn’t want to go but he knew he had to.. within the first week of him being there I got another email from him telling me it was the best decision ever, he was going to the gym, going out for coffee and more importantly he was feeling better and very positive that he was building the strength so that when the call came he was ready.
The first few weeks we continued to talk almost every day, texting and emailing but after almost a month it began to slow down, he wasn’t as quick with his responses and the number one question I would ask him,
“how are you feeling?” he would always give me the
same answer “Not great, but I am hanging in there”
It is weird because despite knowing what could maybe happen to him, never did it come into my mind that this day would come. We only spoke once of this, but decided it wasn’t something we had to talk about We planned of the music festivals wed go to next year, how wed make more effort with being a part of each other’s lives but never did we plan this Dan, you never told me how I was supposed to deal with this, you leaving was not supposed to happen. I was hoping the speech I would do would be after a few wines, me, voluntarily standing up at his 21stbirthday probably embarrassing myself more than him.
You have taught me so much in this past year as well as inspired and motivated many
I think you would be qui3e chuffed with yourself knowing how much of a mark you have made in this world and how many lives you have touched.
I promise you that I will finish what we stared and make sure everyone knows your story.
I never wanted to say goodbye like this Dan and I am angry at you for making me have to.
In life, There are things we don’t want to happen, but have to accept Things we don’t want to know, but have to learn And people we can’t live without, but have to let go.
I love you so much little man, and just so you know, you may be gone but you will never be forgotten.
Now Rest in peace my little angel….finally you can see the world
