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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Cure4 Ed Despicable Me 3 Fundraising Update

A very big thank-you to all  of those who were able to support Thursday’s fundraising screening.  It truly means a lot to our family, and events such as these have a really big positive impact on Isabel and now Tom to know they have such a wide community of family and friends supporting them.

We raised just over $600 for Arranounbai Special school and once they return to school I’ll be sure to find out exactly how the money will be spent.

Cure4Ed Save the Date

Dear Family and Friends,

It’s been a while between fundraisers and with our beautiful boy turning 7 in July we have so much to be grateful for and an even better excuse to celebrate so wanted to touch base with some dates for your diary. Can you tell I’m on University Holidays?

Friday 7th of July Despicable Me 3 Screening: 10:15 at Cremorne Orpheum

Unfortunately we are no longer able to get an afternoon screening which I know would work much better for those working through the holidays but this time was the best I could and Isabel was so keen to celebrate her brother’s birthday with our annual July movie screening.

Tickets can be purchased via: www.trybooking.com/QTEX

All proceeds from the screening will go to Arranounbai Special School.

Sunday 27th of August Pub2Pub

Yep once again some will run, others will walk and stroll in the beautiful winter sun along the northern beaches.

All proceeds from our walk will got to Bear Cottage.

Sunday 17th of September:  Family Fun Day at Balgowlah Heights Bowling Club 

Hopefully by September the weather will start to warm up and it would be so lovely to bring our family, friends and community together with some beers, bowling and market stalls.

This event is not designed to put extra stress on anybody but an opportunity to celebrate. If you feel like you would like to get involved and run a stall on the day then please let me know by the end of July if you’re interested. Your stall could be food, cake, lollies, music, craft, second hand books, clothes toys, activities for the kids, the list endless and we are open to any suggestions. Once we know what sort of stalls we’ll be holding then we’ll be putting up a call for donations and assistance for helpers on the day.

You would just need to let me know before the end of July of the stall your proposing and turn up on the day with you’re gear and a willingness to celebrate.

The proceeds for this event will be spilt evenly between Bear Cottage, Arranounbai Special School and the Australian Niemann Pick Foundation.

On the home front, it’s been a fairly stable year for our boy so far this year with few hospital admissions and not too much further degeneration. He is still managing school all day, everyday, except when he’s in hospital. I even think on his last hospital admission at the end of last term we were discharged on Thursday evening and he made it back to school for the final day of Term 1.  Such a determined tough little guy who never ceases to amaze me, pretty much daily.

I too have had a really good first half of the year continuing on with university studies, strengthening my yoga practice and beginning mindful meditation. All of which have  been a really interesting and useful path to travel and certainly helped to improve both my physical and mental strength.

In the meantime, get those dates in your diary, ideas together for those interested in holding stall at the Family Fun Day, and  enjoy some pics…………

Pub2Pub Fundraising UpDate

A very big thank-you to all those that ran, walked, talked, minded children, supported, sent warm wishes for todays Pub2Pub and also at other times. Our family is truly grateful for the amazing support we receive from family and friends. An extra special thanks to Jo Quarrell,  Joanne Allen,  Niamh Collins,  Alyson Cooke,  Natasha Gennusa, Nicola Sharp,  Julie Ellen Meynell,  Yvonne Hollis,  Nicole O’Donnell,  Stephanie Hopkins,  Kym Parrish, Dianne and Malcolm Stacey and Darren Quarell. It’s days like today that certainly help to smooth a sometimes rocky and challenging road.

In total the Cure4Ed team raised just over $700 for Bear Cottage.


Here are a few pics from todays which was an absolutely beautiful day:IMG_1160



Cure4Ed does the Pub2Pub 2016

Hi there this is the first and only plug I promise but tomorrow morning our family (less Tom) and a group of friends from the St Kierans community will be participating in the Pub2Pub run (well okay walk). This year we’re raising funds for Bear Cottage so please follow this link if you would like to donate.  I’m very, very conscious of Fundraising fatigue and feel supported in so many ways by our beautiful family and friends so please don’t feel compelled to donate, just really wanted to share our movements as this year our brave little guy will be participating in the 3km walk with Pete and Isabel.

Our family is inspired by the work of Bear Cottage and truly grateful for the care and support they provide to Ed and our entire family. We want to support them by raising money as part of my participation in Pub2Pub 2016. Please help me us them by…

Cure4Ed in the Pub2Pub

If anybody is interested in joining us in leisurely 12.7km stroll from Dee Why to the Newport Arms next Sunday 28th August I’ve just registered a Cure4Ed team in the Pub2Pub. Theres also a shorter 3 and 6km course for the kids. I know its late, but if you register by tonight they’ll post the bibs out, otherwise they can easily be collected on the day.  Nothing like leaving it all to the last minute.


This year it finishes at the newly refurbed Newport Arms which should be a fun way  to spend the afternoon.


More details:  https://pub2pub.fusesport.com/


Bear Cottage Super Hero Week

Super Hero week commences this week and we were fortunate enough to celebrate the launch up at Bear Cottage yesterday.

Couldn’t resist sharing these pics with you all .

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It seems there’s a correlation between Super Hero’s and weather  as we’ll be up at Bear Cottage early tomorrow morning for Channel’s Sunrise Breakfast program who’ll be doing the weather  cross from up there. It could be a case of blink and you’ll miss, but I’m sure if our little guy has his way he’ll make sure he’s centre stage with that gorgeous smile of his. We’ll be sure to share  for sure if it’s worth it. In the meantime, here’s the link to a clip from last week’s Channel 10 with Tim Bailey- it’s about the 3 minute mark. Unfortunately I can’t embed video into this blog…..enjoy!!






BFG Screening Fundrasing Update

With the week of birthday celebrations over we’re now relaxing up at Shoal Bay enjoying some family time. I’ve come up for air and very proud to report that last week’s BFG screening raised almost $3 000 which is an amazing effort. This money so generously donated allows us to purchase a $1500 reclining chair on behalf of Bear Cottage for Edwards’s use at home, and $650 each to Arranounbai Special School and to the Australian Niemanm Pick Foundation for medical research.


We are extremely grateful for the generosity and support of everybody involved in making the screening possible including those that attended, minded children, bought raffle tickets and donated prizes. I would like to make a special mention to the following people who donated the raffle prizes: Pauline and Terry McCabe, Fiona Kenny, Peter Thomson and FDC Building, Anita Quigley, The Roges Family, Lindy Kurver, Linda Raines, Angela Jackson and Kirsty Thorpe. I would also like to make a very special mention and a big thank-you to Nicole and Maddie O’Donnell who organised the ticketing on the evening.


These events are so important to our family on many levels, not just for the funds raised but it also reminds us of how lucky our family is to be surrounded by the love, support and friendship of our family, friends and community. On the morning of the movie screening this is what I overheard Isabel explaining to Edward as she was brushing his hair: “ Eddie we are one of the luckiest families I know. This afternoon we’re going to the movies with lots of our family and friends all in the one place with our own private cinema- that’s going to be super fun”.


Many thanks for your support we truly feel blessed to be surroundered by such warmth and generosity and as always we continue to be amazed by the kindness of the human spirit when the road rough and the challenges great- thank-you!!!



Arriving at the Cinema

Early Bird Tix for THE BFG Screening close this Sunday

With just a week to go, the early bird tix for Cure4Ed fundraising screening of The BFG at Cremorne Orpheum next Thursday 7th of July close this SUNDAY, yes in just 4 days. This is so that I can confirm the numbers and secure a private screening of the film. You may of course purchase tickets after this date but all tickets will incur an additional fee of $5 of the original price.

No worries if you can’t make but would like to show you support why not purchase a donation movie ticket? http://www.trybooking.com/LZGR