Ed's Daily Progress

Happy 8th Birthday Beautiful Boy!!

It’s hard to believe almost 6 months since our beautiful little guy with his big heart and killer smile flew out the door at Palm Beach on such a historical day in Australia. Our Ed always knew saying goodbye was never going to be easy and I truly believe he carefully chose his time and place with absolute care knowing we were prepared, connected and ready to begin 2018 without him. Well as ready as you’re ever going to be to say good bye to such a beautiful soul. In those few days after he left, I never imagined it possible to cry as much as as I did, not to mention how dehydrating this was. I also felt the true physiological side effects of grief as my heart literally ached and was shattered into pieces.

With his birthday last Friday, I took a Self Care Day earlier in the week (note the capitals because I think everybody needs to put a SCD in their diary soon) to stop, stretch at yoga, meditate, enjoy the winter sun and reflect on how we’re travelling as we prepared to celebrate his 8th birthday. I wanted to share some of this with you, picking up where I left from the last post.

The timing and departure of his final good bye so peacefully and in such a beautiful place allowed me to find inner strength I didn’t even know I had. Somehow the funeral plans all fell into place with great calm, ease, serenity and flow. From selecting the music and entertainment thanks to the assistance of Kym Parrish and Steph Hopkins. Help from Brian and Gai Hamer to pull a few stings in securing the Balgowlah Bowling Club for the party, and Father Paul Maloney for his guidance in arranging the funeral, especially regarding the appropriate selection of the readings. I think you will all agree the day all came together so easily, making it the amazing farewell that it was.

We were also overwhelmed and truly grateful for all of the love, support, flowers, meals, and care packages we received at this time and which have continued through the year.

And whilst we are truly grateful for all of this love and support, I think you were all trumped by our Ed’s with his dashing display of rainbows on the morning of his funeral, only to bring the sunshine for the party so the kids could play outside at the Bowling Club in the afternoon. I will never forget my arrival at the church to see his little white casket in place with a bright display of rainbow light streaming down through the stained glass windows of the church onto him.

And the very next day, as if his “find the rainbow game” wasn’t enough on the day of his funeral, there was an enormous rainbow stretching from Bear Cottage right across Manly as the Davis family participated in The Coles Classic swim raising funds in honour of our Ed’s.

For the first few weeks following the funeral I think we all felt numb as we learnt to build new life with out our Ed’s. Tom had his first day of school on the Friday prior to the funeral and I distinctly remember feeling absolutely void of any emotion as I walked away from his classroom.

Since all of us are learning to live with grief and , I’ll share with you a couple of Tom and Isabel’s. Just prior to leaving our house on the morning of the funeral I gathered the troops for a bit of a team talk, and it went something like this:

Me: “Okay gang, this is probably going to be one of the hardest days our lives and if we can get through this together, we can do anything together. We need to be kind, supportive”…..etc and on I went.

As I’m saying this I can see Isabel listening intently, processing, thinking, reflecting whilst Tom’s focus and eyes starts to wander off. I had barely finished my pep talk and he says, “Yeah okay, get it but can we have another kid?. I suggested that perhaps we could farewell our Ed’s first before we discuss this further, never mind the fact that I may be just a little too old even by Hollywood standards.

By the afternoon of the next day as we’re reflecting on the day that was, Isabel makes a suggestion that like her friend Ruby from swimming we could adopt not one child, but two. A brother and sister so they had each other and didn’t feel left out of our family. It’s a great reminder that each of us are dealing with grief in our own unique way and will continue to do so as we move to a different stage of life and learn to live with our Ed’s not with us at home but firmly placed in our hearts.

More recently, our Tom has also revealed some interesting insight into his own experience of grief and death. Whilst dining at Fingal Bay Sport and Rec Club last holidays he looked up at a framed, signed Wallabies jersey and said ,”Look, somebody died.” It took us a few moments to register what he meant but he was likening it to the Arranounbai school shirt signed by staff and students that was framed and presented to us at the funeral by the staff at Arranounbai.

More recently, over a game of “Family Feud” one of the questions was ‘name something you would look at for a long time’. The rest of the family is thinking: book; tv; beach; sunset etc. Tom says “ A dead person” referring to those days at Bear Cottage after Ed’s had passed when indeed we spent a lot of time looking at our rested soul now in peace. In another game of Family Feud we had to name ‘something that guides you.’ We’re all thinking: torch; lamp; map; light etc Tom names a few including; your heart; God: and then loudly and proudly says, “a dead person” . It’s beautiful to see our Ed’s guiding light shining in all of us.

Obviously there is an immense sense of loss and sadness but somehow his presence was and still is extremely strong and I feel his guidance in almost all aspects of my life. When Ed’s was with us, I used to say in jest that in some ways he was the easiest of my 3 children. He didn’t run away, he ate all of his dinner, didn’t talk back, had no after school activities and kept his room tidy. Now he does all of those things in addition to providing strength and guidance when we most need it. The perfect child, an absolute gift and I feel so grateful to call him my son.

For the first 3 months of this year when people asked how we were I honestly didn’t have an answer. I didn’t really know. I knew we were going, and probably moving in the right direction. For the most part we were in the right place, at the right time, dressed, fed and moving. At this time it was a pretty good achievement as we just tried to keep it simple. Tom and Issy had settled into school really well, Pete was back at work, and I found a balance between work, study, yoga and meditation.

It was also extremely overwhelming as our world opened up to a whole new world of opportunities which were bitter sweet. . Holidays could be more than a 2 hours radius from Club WestMed, and much more could be achieved in an afternoon after school but we still miss our Ed’s and would do anything to see that smile again.

Almost 6 months on, now when people ask how we’re doing I think I can honestly say we’re doing okay. There’s no denying that time heals and we are slowly adjusting to a new life without our Ed’s. At times it doesn’t feel easier, just different and I’m not ashamed to admit that I don’t think a day or few will go by when I don’t allow myself to shed a tear or two for him. It’s not major, its not that time consuming and in some ways it’s cathartic and cleansing. I guess it’s a natural feeling to such an enormous loss. It’s certainly not debilitating and in many ways its helpful to heal and transform. I learnt many things from my Ed’s and one of the really important ones was to live a true, authentic, honest life filled with love, self care, clarity, and calm. To be the best version of myself which will be my lifelong journey and promise to him.

Not surprisingly it’s been a year of firsts, and no doubt many more to come. The grief and difficulty of the big days like Mothers Day or a Birthday are what they are. You just have to relax into them and allow them to be what they will be; sad; happy; emotional….whatever, just go with it.

But sometimes grief can lurk in the small things and completely take you by surprise. It may be as small as hanging 4 towels up in the bathroom instead of 5, noticing the markedly reduced washing hanging on the clothes line or an afternoon where you can go for an ice-cream, visit a friend, do the grocery shopping and cook dinner……something we would never been able to do in our last year owith Ed.

It’s a bitter sweet because some of these things we were never able to do but really all we want to do is see that gorgeous smile again. Our first family holiday over Easter was no exception to this bitter sweet feeling as we drove out of Sydney for the first time without Ed’s. Kids stretched out in the back seat, one car seat less and an empty boot missing a wheelchair with not a piece of medical equipment in sight.

Whilst I would do anything to see that beautiful smiling face again there’s something extremely real, liberating and enlightening learning to live with such a strong emotion like grief. It keeps you real, honest and on your toes giving you strength to face all of lifes challenges head on with strength and courage.

I’ve found my happy place by going down the road to yoga each morning at 6:00am and dedicating that time to my beautiful Ed. I feel like it’s precious time with him and it gives me strength to get on with the rest day in the best way I can. His presence was noted by myself, Steph and Tash on Friday when miraculously the music player that hadn’t been working all yoga session blared out The Beatles “Let It Be” for the final resting, meditation session. Needless to say I spent those last few minutes with a smile on my face as peaceful, beautiful, cathartic tears rolled down my face. Ed’s was definitely making his presence felt here. After the class I was so ready to get through the rest of his birthday with a little spring in my step and a sense of cheer despite being such a difficult day.   I think the unseasonably warm weather may have also helped so thanks Ed’s!!

I’ve also found another happy place teaching up at Arranounbai School which has been truly amazing. I’m now on a 2 day a week temporary contract until the end of the year for Thursday and Friday where I’m lucky enough to teach drama and swimming. The rest of the days are casual teaching days working across the school. The last few weeks I’ve worked 5 days whilst the university break is on. I feel so grateful to be working in such a special place surrounded by amazing and inspirational staff each day. I feel like my Ed’s is beaming down that killer smile saying “onya Mum, you’re doing me proud working there with my friends and teachers.”

As we learn to navigate our life without Ed’s, the passed 6 months have seen so many firsts with the big 8th birthday last Friday, 6th of July. I spent the day working at the school, Pete had a half day at work and we all went down to Manly in the afternoon and celebrated in true Ed’s rock star style.

On Saturday we had our usual open house birthday party and the cheerful, joyous vibe of the celebration was testament to the fact just how powerful he was in connecting us all together to give us such strength and courage as he always knew how hard it was going to be for us once we left. There’s no denying his journey enriched our lives in so many ways, not to mention that divine smile. He taught us so much about love, life, friendship, courage and the beauty in rainbows.

And so my beautiful Ed we would like to wish you a very Happy 8th Birthday and thank-you for all you have taught us over the passed 8 years. We miss you every day but know you hold a firm place in our hearts as you continue to guide and protect us.


All our love,


Mum,  Dad, Isabel and Tom

Rainbows from Bondi to Manly and Allambie Heights on the day of the funeral



Rainbow in Manly the day after the funeral

Some Birthday Pics from the weekend




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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Ed's Daily Progress

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.

Ed's Daily Progress

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…………

Ed's Daily Progress

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



Ed's Daily Progress

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…
Ed's Daily Progress

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/


Ed's Daily Progress

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 .

image image image image image

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!!






Ed's Daily Progress

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