Ed's Daily Progress

A Beautiful Farewell from our Amazing Little Guy

Warning:  Grab a box of tissues before reading!!

After such an amazing road travelled it’s no surprise that our precious little guy farewelled us in the manner in which he did- peacefully, calmly, on Australia day, and with a view to die for……literally. I hope when it’s my time to go I’m able to leave with such strength, courage and style, not to mention a Palm Beach address on my death certificate. I’m sure he even had a role to play in the #changethedate movement, along with his support of the #voteyes movement with his rainbow earring and keyring collection.  No doubt we will return to beautiful Palm Beach each year on the 26th of January in his memory and honour to celebrate Edward’s day. If death could ever be beautiful, our Edward certainly managed to do this.


There’s absolutely no denying that we are heart broken and whilst we knew eventually this day would come nothing can ever prepare you for the pain and heartache. However for me personally, the way in which he spread those Angel wings wide over Palm Beach has certainly given me the strength these passed few days to ensure I give him the best send off ever and one he truly deserves. I wanted to share with you how our beautiful Edward left this world in the hope it may ease the pain and emptiness we may be feeling since he left.


As we all know Ed’s condition was slowly deteriorating and his quality of life getting poorer. At the end of November our little guy became dependent on oxygen pretty much full time. This certainly moved the goal posts for us all and made the logistics of getting out and about a little more difficult, though not impossible. After a few days at home whilst we all adjusted to this requirement, and when I saw his little face light up on Presentation Day I knew he was not yet ready to retire from school. And so with the help of the amazing staff at Arranounbai he managed to finish the school year even getting in the pool on the final Friday for his weekly swim.


Over the summer holidays he remained fairly stable though spending much of the time relaxing and snoozing in his chair……something we should all do more often. Sadly getting out of the house didn’t seem to please him too much and we started to call in carers a little more often to sit with him whilst we got out for a few hours to take Tom for a run. Christmas came and went and his condition pretty much remained stable. Wanting to keep things moving as we have always done, we continued on with our plans to spend the last week of the holidays in Palm Beach, putting the little into guy Bear Cottage for a few days then bringing him back up for some precious family time as arranged.


On his return to Palm Beach we all noticed his condition had deteriorated a little more and had some time to reflect and discuss the situation together as family in a very special place: with time, care and love. This was a place that he absolutely loved and on his first visit 4 years ago was able to use words to describe how much he liked it and how happy it made him. I’m sensing on his arrival that day he had made the decision that he was going to have to be carried out of the place.


During this time we all reflected and communicated with each other how we were feeling. Pete shared he was going to find it really difficult to return to work with Ed’s condition, I was a little daunted about how I was going to manage the logistics of the new school year and Isabel said that she hoped his passing didn’t happen at home as she didn’t want this to be her last memory of him at home. Tom said he’s just going to miss pinching his cheeks.


It saddened me very much that I was going to have to return on Monday to communicate to Arranounbai that I didn’t think our little guy was up for school. We spoke about where we would like him to pass if we all had the choice and spoke of places in Manly of where we may place his memorial plaque. It was such a special, precious time we had together as a family to discuss these issues. And so we had loosely decided to head home on the Thursday, spend the weekend at home and possibly put him in Bear Cottage once the school year was under way.


On the Wednesday a text came from our generous friends who shared their holiday home with us asking us if we’d like to stay another day, as the house wasn’t being used until the Saturday. We accepted on the grounds that our little guy was up to it.


On the 26th of January he awoke in a similar condition to the previous morning, although overnight had developed a temperature and a fairly fast heart rate. We had planned to head home that afternoon, and have him reviewed by a Doctor at Bear Cottage to ensure we were keeping him as comfortable as possible. I didn’t have our oxygen saturation monitor with us or even a thermometer and there was something really liberating about this. If I had, what was I going to do about it anyway and I know it would add a level of concern that wasn’t necessary at this point. I was blissfully unaware of what exactly was going on but felt confident enough as his mother to know he was comfortable and definitely well enough to wait until the afternoon.


We knew we were getting close, but not that close.   Firstly it was business as usual in Palm Beach paradise as Pete headed off to golf, Grandma (Margaret) came over for bacon and egg rolls before I head down the beach for a swim with Tom and Issy whilst Grandma sat with our angel.


At 11:25 I called Mum and left the beach. Mum left Eddie for few moments whilst we swapped supervising shifts on the stairs between the house and the beach. He had been left alone for a few minutes and when I returned I told him I was back and that I loved him. I felt how warm he was and noticed his heart racing. I then told him I would be back with some Panadol. When I returned, I placed my hand on his heart for one the last time and noticed it had stopped beating……as simple that. Without a sound, a noise, pain or a fuss our precious Angel had spread his wings far and wide across Palm Beach with the comfort knowledge that we were all together and doing what we liked to do.


And so with 7 and half years to think about how this day was all going to pan out what happened next was a complete and utter surprise. Of course I was completely devastated but there was this amazing sense of relief and beauty as I removed his nasal prongs, turned off the oxygen machine and held his beautiful peaceful body in my arms and wept. He held in my arms for a good 15 or 20 mins as I gathered strength and made a plan as his beautiful soul left us. Firstly, I called Bear Cottage to notify them and ask if it would be possible to bring his body down to the Clifton Gardens room which a is bedroom cooled down to 9 degrees where families can grieve for up to 3 days with their child. I had thought about this before but never really discussed it fully with Pete, after all you’re never going to really know how you feel until happens. But it seemed liked a better option than having the police or Dr come to certify the body then arrange for a funeral director to cart him away immediately, at least in the short term.


After a very beautiful time holding my precious boy I then texted Pete who was now on his way back from golf to cancel the Neurofen order I had placed for Ed’s. He called me straight back and we chatted on the phone as I told him the news. Pete and I then had some time before Grandma and the kids returned from the beach. They too had sometime to process what had happened. All in all it was an incredible 4 hours between his passing and us departing Palm Beach.


It was quite surreal and something like a scene from Weekend at Burnies as we carried our little guy out of the house and placed him in his car seat to drive him back to Bear Cottage. The entire time he had a big smirk on his face and I think he was hoping I might be pulled over for a RBT at 3:30 on hot Australia Day on the northern beaches. The joke was definitely on us, especially as we pulled into home briefly to unpack the esky full of meat whilst our neighbour crossed paths in the street wanting to talk about the boundary fence that is currently being constructed at our house.


On arrival at Bear Cottage we lay him peacefully to rest and there was something so very special happening in that time between his passing Friday morning and sending his body off with the Funeral Director on Sunday morning. Friday night I got in the big bath and we washed him all together just like we had done on the previous few nights at Palm Beach. We dressed him together, lay him bed, and played music as family and friends came to visit. After all of the machines and apparatus that had assisted him towards the end there was something very assuring to see him looking so beautiful, peaceful and pain free.


At around 10:30am on Sunday morning we farewelled his body out of Bear Cottage. As the funeral director drove up the driveway we released (environmentally friendly) helium balloons into the air with messages of love written on butterflies to the Aloe Blacc’s song, “The Man”. We then all went for a swim together down in Manly.


And I wanted to share this with you before we celebrate his life on Saturday, as it is the events of those few days that have given me the strength to put together the very best farewell I can for our precious little guy. If death can ever be beautiful, our Ed absolutely made sure it was for him.


Fly high little guy, we’ll make sure your party is as beautiful as your departure!!

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