Eli's Celebration

HI everyone...
i know i have promised for AGES to post some details about Eli's celebration.
I will see how i go and i hope i capture the day as best as i can.

The morning started in a whirlwind really, we knew it was the day to say goodbye to our son. But as pete said, we had the most amazing build up to the day that we could honestly be there and feel nothing but an immense pride towards our son. All the stuff he taught us, the joy and tears we had when we put together his photo montage, the pain and pride we felt when we were writing our speeches and the fond memories we had when discussing eli's life with the celebrant Peter Murray who conducted the service.

We took great comfort knowing that eli was being looked after in an amazing way by tom, rachel and peter murray. We took our time and planned a little bit of eli's service every day. Tuesday evening we picked a couple of readings and some 'grown up clothes', wednesday we looked at all our photos and put our montage together and thursday we very proudly wrote our speeches and tweaked his little coffin with wiggles stickers, his toothbrush and toothpaste, an aussie flag, a little superman symbol, his wiggles drum, his little fishy hat, a couple of cows that were given to Eli by his friends, a photo of his little mates and their mums from our mothers group and most of all, a bloody big dose of our love. Friday we said goodbye to our baby boy.

Peter Murray did a fantastic job and outlined the proceedings for the service and invited our friend bella to do a reading for us.
He then talked about eli's life and all the first's that eli experienced which raised a few giggles from the crowd. Soon after we celebrated Eli's life with a photo montage which was just lovely and hopefully it will work on the blog for us. We also heard from Peter Appleford - our big boss which was just the most amazing speech and again, we will post it for you to read. Peter did a fantastic job in capturing EVERYTHING we wanted and needed and for that we thank you. Eli's WAMMA (grandma from WA) stepped up and read a poem that was written by his aunty rebecca when eli was first born and we thought it was a lovely reading for the service. Pete and i also got up with immense pride and recalled some of our favourite memories and the lessons he taught us. We then invited our family and friends to lay a bit of bottlebrush, tea tree and eucalyptus leaves on eli's coffin (we called it the candy bar because thats what it ended up looking like!) and that was undertaken to eli's favourite song "The birds and the bees". After a few more words, it was time to say goodbye to our beautiful son and let him go for the last time. With many tears, we picked up his tiny 'candybar' and walked it to the hearse to the gorgeous song 'In the arms of an angel'. We did not want the experience to end and to us, it was no way a funeral...it will forever be known as eli's 'service' or 'celebration'.

The car carried eli's little candybar away to traralgon for his final trip where he was cremated. As you have probably read, there was no way he was going to be left too long ANYWHERE and as soon as rachel called us to say eli was home, we collected him the following day which was the wednesday after his celebration.

Eli kept his promise and we got the most amazing amount of rain on the sunday (160mm or thereabouts in buchan) and it has steadily been keeping pace since we have been home. Eli is sitting in his cot off our kitchen so he can see everything that is going on, and is within easy reach to talk to. Every sunday is extremely difficult but we are slowly learning to celebrate his life rather than remembering the way he died. We have seen things that no one on this earth should see, and i suspect that it is going to take a while to really get our heads around. But, we will take each day as it comes and surround ourselves with positive energy and know that we have had a truly special little man in our world that has taught us so much about life and ourselves in such a short time. And we will continue to work quietly but passionately for all of our charities (including giving blood!!) and i know it will keep us busy and keep eli's legacy alive.

Rebecca's poem - 'my teddy bear'

Your smile warms our heart
Your gift warms our soul
Your are our son and friend
Your heart is big and true
And true is what we will always be to you
Our love for you
There is no spare
Because you are our teddy bear
You are our wildest dream come true
But never a son as true as you
So dream a dream
As old as time
And it will come in good time
We have always stood side by side
And never put a dream aside
Games we have played
And times we have laughed
Those times will always stay in our hearts
And forever remember
You are our son, and teddy bear
If ever you need us we will always be there.

Reading Bella read-

Ninny saw that you were getting tired
A cure was not to be
So she put her arms around you
And whispered ‘come with me’

With tearful eyes we all watched you suffer
And saw you fade away
Although we loved you dearly
We would not make you stay

So when we saw you sleeping
So peacefully from pain
We could not wish you back
To suffer that way again

A beautiful heart stopped beating
Brave and inspirational hands went to rest
Ninny took you to prove to us
She only takes the best

In life we will miss you dearly
In death we love you still
In our hearts you will always hold a special place
No one else will ever fill.

Peter Applefords speech (inspirational)...thanks peter a...
Eli’s Service

Peter and Jody have asked me to say a few words today about Eli.

I am not here to tell you how well I knew Eli, or all the good times we had together. To be honest I only met him three times – one of those was a haircut appointment.

I am not going to try and make sense of what has happened. I cannot.

I am going to talk about how Eli can make the world a better place. I am going to tell a story of three people – a family. A story of love, courage and strength. A story about one individual that can make us all better people.

The world can be a better place because of Eli and what has happened. And we need to make this happen. We owe it to Eli. We owe it to Peter and Jody.

And Jody and peter need to know this. They need to know that what has happened meant something. So tell them, if not today when you have a chance. Tell them what Eli meant to you and how you are a better person because of Eli.

We have seen three people who no longer coveted the wants of life. It was about the needs - needs of life, for life. The need to be together, to be strong, to be loving, to be courageous. Hours, days, weeks, months of blood tests, results, doctors, hospitals, needles, operations. Away from home, away from family, away from friends – but together as a family. The food didn’t matter, the house you owned, the car you drove, the work, the stakeholders. None of it was important. None of it mattered. All those things we spend so much time worrying about, arguing about, getting upset over and upsetting others over.

It is about a child. A tremendous boy called Eli. The treasure of his parents. The hero to many.

Eli went through a lot. It all happened to Eli. He asked for none of it. But he didn’t complain. He met it all head on. He stayed brave and happy. And he provided happiness and joy to so many.

He was faced with many challenges. Leukaemia, splenectomy, transplants and infections – you name it. You couldn’t blame him if he gave up. But he didn’t, he wouldn’t. He fought on showing strength and courage – the strength and courage of a hero, our champion. Strength and courage we all respect. Supported by the love and strength of his parents. You could see where it all came from. And watched and helped by many.

Eli provided many good times. Peter and Jody cherished the time they had together as a family. And wouldn’t give it up for anything. It is a pity is couldn’t be for longer.

I am better for knowing Eli and what happened. Eli got us all to take action – donate money, send wishes, express love and support, pray, hope – shave our heads. He pulled us together, he made us forget our differences. He brought out the good in us. He made us do things we wouldn’t normally do – I was pretty vain about my hair. And we can’t let that go.

In the future remember Eli. His bravery, his love, his strength, his courage. Keep this in mind in the difficult times. The next time life seems tough, when we feel an injustice has occurred, we aren’t happy about something or with someone – think of Eli. Think of Jody and Peter. Think of the last twelve months and today. Think is it about a want or a need. Think would Jody and Peter let it go to have Eli back – would Eli give up.

We cannot change others but we can change ourselves. Use Eli’s strength in the hard times, for courage in fearful times, to place things in perspective. Do this and the world would be a better place.

Thankyou Eli for what you have taught me.

God bless.

Mum and dads speech

Pete opened

On behalf of Eli, Jodes and myself we would like to sincerely like thank our family, friends, colleagues, doctors, nurses, PSA’s for all your on going support. We would like to thank those people who kept an eye on our house, cows, cat and the girls from the newly formed Bairnsdale Ladies Auxiliary for your very nourishing Red Cross packages. I know that I will be fed and sheltered if Jodes ever kicks me out of the house. We would also like to acknowledge the Dr’s, nurses and PSA’s at the children’s hospital who never gave up on Eli and our employers Fisheries Victoria who never questioned and only gave unconditional support. The Leukaemia Foundation for providing us with a home away from home and support while we were in hospital and ‘Challenge” – supporting kids with cancer for the ‘little things’ we needed. Angel flight also helped us get to Melbourne and back in a day which was just sensational. Without all that love and support we would not got as far as we did as a family.

JODES

Giving birth to a baby is truly the most wonderful experience anyone can have. How proud we were when Eli Charlie Simpson came into our world. Like many new parents, a new world opens up full of amazement, joy and most of all love.
Eli always challenged us. Quite unsettled at times, pretty good on the tooth, a love for my boobs, didn’t like to sleep much through the day and always kept us honest. Like all babies, he grew, ate well and was always loved unconditionally.
When eli was 15 weeks of age, our world changed forever. He was diagnosed with leukaemia and while we were literally heartbroken, we were determined to do what we could to help our son get through the biggest battle of his life.
And so started the indoctrination into a life where medicine, blood counts and isolation takes priority – 4 hours from home and far from any kind of normality.
Eli took most things in his stride. We continued to strive for the most ‘normal’ life we could, having our own routines and always encouraging our son to develop and achieve milestones in his own time – which he did.
I often said it was hard in a medical world to not forget about the ‘baby stuff’. At times eli cried and we thought, is it the affects of chemo, what is happening only to have a tooth pop up a couple of days later. The challenges were many!
As a very proud mum, I could rave on forever about our son. I would like to share a couple of my memories with you.
June 4th this year, a day before his bone marrow transplant, eli discovered he had a willy. One small pull and he was away. I laughed like crazy, not fully comprehending how much joy a doodle could bring to a males life. I quietly left the room knowing that pete was hanging over the cot looking at eli with a belly full of pride saying ‘that’s my boy’. Little did they know we were at the nurses station watching them on a tv screen and both were clearly in heaven. How proud I was.
The other thing I loved was knowing that eli took great delight in watching the wiggles ad nauseum. I think pete and I know every wiggles tune to have ever graced this earth and are thankful for their talents as im sure hospital would have been an extremely boring place without them for eli.
I also will remember the massive carbon footprint left as I account for all the kilometres I did driving eli around so he would sleep for more than 30mins. Ironically, the car we bought to drive eli to appointments about 2 months ago is now on gas!
Even though eli was just 13 ½ months of age, his life was packed full of experiences.
We would like to openly acknowledge the grief and devastation we are feeling for the loss of our son. We both feel very lost without eli being around us. We take comfort in the fact that eli is no longer fighting and that he is truly in a place where he can muck around, not worry about germs and most importantly, he is no longer in any pain.
Our lives will no longer consist of giving medical staff heaps of curry, laughing as eli and pete strategically planted creepy crawlies under thermometers and on drips to scare nursing staff, supporting other families in the same situation we were faced with, giving people knicknames like rae-way, fantapants, the roadrunner, the school principle, band camp, Hannah Montana, the goonie bird, glamourpuss, Cleopatra, fritz, the wee Scottish thistle, muddy waters and the list goes on. You can see we often had plenty of times on our hands to get into some sort of trouble.
We would like to think that our experience at the children’s cancer centre with a baby has left a legacy of continually trying improve processes and procedures. For staff, just trying to be a bit more tolerant of mums and dads with small babies like eli, remembering to open doors quietly when babies were sleeping, and letting mums and dads guide the way with routines and not let hospitals dictate life. We fought hard for these few privileges and hope they assist other families in time.
We know eli will be safe in his ninny’s arms, eating twisties, blowing raspberries, watching the wiggles and continuing to leave his mark on our world.
Eli will have many legacies for us, and we hope he has just one or two for you as well. Some will be very quickly apparent, but some will happen over time. I know I will remember our son as a bloody little legend who fought like hell and was loved unconditionally by everyone.
PETE

When I sat down to pen a few words about our boy, I said where do you bloody start. As Jodes said Eli always kept us honest and always seen things black and white. He had Jodes stubbiness and my cheek and I know in the years to come that Jodes would have been that bad cop and myself the good cop. Even though he was only with us for a short time, I will always treasure the memories of our boy. I will treasure the mornings that we went milk crate hunting in the streets of North Melbourne and how I spoke to him about what would be required when we moved onto larger moving targets. I will admire his ability to attract the most beautiful nurses who would ever find in a hospital into his room. I will miss his little monkeyshines. The way he blew raspberries and how it was music to my ears and most of all, our cuddles and how we played on the swing and how he sang like a canary in the process. I will never forget Eli’s fighting and staying power and how demonstrated spirit of his ancestors who fought the battles of Gallipoli, Western Front and patrolled the world’s vast oceans.
I would like to thank our boy for the new lines in my face and the grey hair that is emerging like weeds in a paddock full of clover. I thank him most for teaching me about life, how simple things are often the best, not to be afraid, what courage and determine really means, how to be strong and most of all the good times we had as a family.
I take solace in the fact that he fought a good fight to the very end and never gave up and how Jodes and I were with him to the very end to tell him that we loved him, how proud of him we were and that he was free to go.
There’s no doubt that we will miss our little man and the flags in out heart will forever fly at half-mast. I know in my own heart as the minutes, days and years pass by his legacy will become clear. It’s not good-bye but we shall meet again my big buddy and can you do something about this bloody drought…


Eli's final farewell speech
ELI

Just before eli passed away, he asked his mum to let you all know that he was extremely thankful for all your support.
He said he felt so lucky getting so many messages from you all and takes comfort in the fact that he knows you will look after his mum and dad for him.
Eli said he felt sad to leave but he was tired from fighting. He said he was very proud that he gave life a fair crack and enjoyed the time he did have here with us all.
Eli was also thankful to all the staff at the royal children’s hospital and dr goss who followed his progress from his diagnosis and visited us in Melbourne when he could.
Eli said that he would like to thank his mum and dad for never leaving his side since the time he was born and understands that there will be a hole in their hearts forever. He also giggles at the times mum got cranky at some of the medical staff which put a new meaning to the phrase ‘fix bayonets!”
Eli said that he knew his mum and dad loved him unconditionally and were his voice when he needed to be heard. He also recalls the time he would pull dads chest hair in the shower and all those times mum copped wee, spew or poo over her and she always took it in her stride. Eli remembered the time when he heard his mum say ‘we started this as a family, and we will finish it as a family” Eli said he was so proud of us all because we did.
Eli said to remember him as a little star in the sky, always looking down and will do his best to bring some rain to us.
Eli would like you to remember one thing…if you think you are having a crappy day, just remember all the little bubbas and their families on the cancer ward at the royal children’s hospital and the monumental fight they have on their hands…those are the things we should be worrying about.
Eli said to say that he loves you all very much.

Thankyou all once again for showing us that there is humanity in the world and for sharing the life of Eli Charlie Simpson with us.

Eli's photos



MELONS SHACK...

Im not sure whether we told you, but we are on a block of land which we were hoping to subdivide while eli was alive, with the intention of building our family home down the bottom of our block. For those that know us, we very eagerly renovated a 'shed' into a little home which has 2 bedrooms, a nice balcony, oodles of mozzies, a bathroom that is on the inside now (instead of a shed outside!)...we renovated when i was heavily pregnant, and we were pleased when we could finally move in (only 2 weeks before eli came into the world)!

We had the intention of building our family home, and keeping the little shack that we currently live in for family and friends to come and visit, and the possibility of holiday renting it...

when eli was diagnosed with leukaemia, we immediately decided the shack was not to be holiday rented, it was a little home that would be made available to not only our family and friends, but those families who have kids with cancer/leukaemia, bereaved families, as well as staff working on the 6th floor as a little bit of respite east of the city. We are stressing its not a HUGE house, but one that is certainly a home and filled with lots of love.

'melons cottage' is a small legacy in honor of our son, as well as all those parents who have walked a mile in our shoes and lost their beautiful children...

It is the absolute least we can do for those who are still fighting these insidious diseases or families who are still trying to grasp the fact that they now have a life without their beautiful son or daughter. Both pete and i acknowledge that we are in a unique position to keep both blocks and offer our small house for just a bit of respite for everyone...

Stay posted for some piccies of melon's shack as we continue to work on the house with loving and beautiful memories of our son. A place where hopefully one day you can sit and take stock of your lives, laugh and cry, and hopefully remember our beautiful son Eli Charlie Simpson...

A bereavement thanks...

For those who live a bit further away, pete and i put a bereavement thanks in the local paper, and feel like this would be a good vehicle to ensure that ALL of you get a thanks and mmmwwwahhh from us...

Bereavement Thanks
Simpson - Eli Charlie

We would like to extend a heartfelt thanks to everyone who helped celebrate the life of our son Eli. To all who helped us with our cat, cows, plants and house, thankyou so much. To those who found the time to cook us tucker and get it to us both at home and in Melbourne, we are grateful. To those who sent us messages of love, thoughts and support, we just so humbled to have you all in our lives and your beautiful kindness will never be forgotten. We will quietly continue our passion to raise the profiles of our charities in our community so they can continue helping families like ours.
Tom, Peter and Rachel - thankyou for helping us with Eli's service, a perfect fit for our family and finally, our work colleagues both past and present, for keeping in touch and supporting us so wonderfully.
Eli's legacy will forever live on...
Jodie and Peter Simpson.