Never like a shag on a rock


Where did the time go?

Sometimes it is surprising how fast another month can slip by…. Like it has since the last post.

An update on Samuel

Samuel has continued doing his own thing, having good days and bad days. Some days heavily medicated and some days less medicated.

Surprisingly he has made it through all of winter without a crashing episode of pneumonia, despite no longer having any of the respiratory support of previous years. The staff at Bear Cottage are just like us, shrugging their shoulders and all they can say is…. It’s Samuel.

His tenth birthday was a milestone none of us expected to make, but it was a great (if insanely busy )week last week celebrating Tanja’s 18th, Taylor’s 13th and Samuel’s 10th.

Another short stint at Bear Cottage

Samuel has been at Bear Cottage since Thursday last week to help us wrap up the week with other events. Taylor and I joined Samuel on Sunday afternoon to spend a few days and unwind, while Jo-Ann and Tanja stayed at home to take care of a few other things.

As usual Bear Cottage is great and provides a good break, and an opportunity to snap pictures like the one at the head of this post.

I love the environment around Manly and take the opportunity to walk/run in places around the beaches and headlands that are such a different view to home. With views like this ….


A shag on a rock.. Or the beach

Today provided a different sort of exercise though …..

Rather than a run or walk to talk in the scenery I spent 45 minutes doing soft sand and shallow water runs to try and catch a Pied Cormorant (a shag) which had a bundle of fishing line, a hook and a big fishing float wrapped around it’s wing.

Calls to wires and to Manly councils animal services said they knew about the bird but couldn’t do anything!

After 45 minutes, a couple of attempts (failed) and a bite from the Cormorant during one of the attempts, local Manly resident Chris showed up just as the cormorant was about to escape from under the towel during another attempt… And with speed and grace had the towel back over the bird, the bird wrapped up and subdued. We took the bird back to Chris’ place (Chris copped a quick bite in the process) and cut away all of the offending material.

Chris’ partner (sorry I missed her name) called WIRES and let them know that bird had been captured and the line, hook and float removed. At the request of WIRES they then took the bird to a nearby vet, where it is spending the night.

It was a different but fulfilling way to get in today’s exercise.

20130903-181945.jpg Chris, Taylor and I with the Cormorant.

Searching for the meaning of life

In Douglas Adams “Hitchhikers guide to the Galaxy” we learn that the answer to the ultimate question on life the universe and everything is 42. It’s just a shame that we never did get to find out what the ultimate question was.

It is even funnier that “life the universe and everything” and the number “42” have taken on cult status across the internet, particularly when Adams says he chose the number randomly and as a joke…..

But there are some things in life for which the number 42 does have some significance.



A Marathon?


Emil Zatopek, a three-time Olympic Gold Medalist (one of which is a Marathon medal, after he decided to run in the event at the last-minute) said

“If you want to win something run a hundred metres, if you want to experience something run a marathon”


Winning or running a marathon?

Our experience with Samuel has been an ongoing mix of sprints and marathons, somethings we have won along the way.. but the marathon of his experience is continuing….

Picking Milestones…

Last year I picked myself up and ran a half marathon.. (13.6 miles or 21.1 km) or what some people want to call a “PIKERMI” (pronounced pee-KER-mee). The name comes from the town that is halfway between Athens and Marathon. The philosophy behind choosing this name, and not calling it a half marathon, is that running  13.6 miles or 21.1 km should not be considered to be a half of anything……

I’m not one to do things by halves….

Doing my first Pikermi was an interesting experiment, but not being one to do things by half I have decided that it is time to really experience something and to run a full marathon….

While running the marathon is not going to teach me the meaning to life the universe and everything…. after all there is a slight miscalculation with the Marathon being 42.195 Km’s (26 Miles), I am sure that true to Emil Zatopek’s advice I am really about to experience something (including a lot of pain as I crank up my training).

100 Days (ish)

When I decided to do my Pikermi I had 60 days until my chosen event…. some called me crazy.. but I got there.

This year I have chosen and event that gives me a 100 day lead in time.

Where and when?

I have chosen the Blackmore’s Sydney Marathon which happens on Sunday 22nd September (a little earlier than originally planned.. but other plans have ruled out those events 🙁  )

I’ll keep things up to date with my training with an occasional post on here, and some regular updates on my facebook and twitter accounts….


When your world shrinks….


Back to Bear Cottage…

After all the difficulties with Samuel he has been home for two weeks. Samuel and Jo-ann have returned to Bear Cottage… but that is not a worry or cause for concern.. it’s planned…. Jo-ann will be a little spoiled as Bear Cottage holds their mother’s day camp” giving some pampering to her and some other extremely deserving mums.

The return to Bear Cottage will actually act a bit of a circuit breaker for all of us.

Jo-ann gets pampered, Samuel gets some more care and attention from the lovely staff (and we get a bit of a progress check about Samuel from the staff, they are more likely to see any significant changes in Samuel, having had a couple of weeks break since they last saw him).

The girls are at home with me…  back to school for them both and a bit of pressure off for them around home too.


What has happened with Samuel at home?

Not all smooth sailing and things still don’t go as expected.

Some days have been horrendous, where it has been almost impossible to keep him comfortable no matter what drugs we are able to give him and other days he has simply slept his way through the day without a noise.

A worrying development was having Taylor home from school, completely wiped out by a bad head cold… which spread to Tanja and then having both girls home from school. It was inevitable that Samuel would come down with it.

Samuel’s secretions started to thicken up and go a bit off colour, he has needed a lot of suctioning and all of this started to trigger a large dose of worry for Jo-ann and I.. what would it mean for him?

We don’t really know. He continues to do weird things.. one minute his skin feels like it is burning,the next it feels like an ice-cube, but his core temperature has been fine. One minute he is breathing comfortably, the next he is breathing fast and hard.. but his lungs have still sounded mostly clear.

Reflecting on a shrinking world…

The last few days have provided an opportunity to think about what has happened. I realised that what has happened, for me at least, is that my world has shrunk…

Sometimes it is absolutely necessary for your world to shrink and  to become extremely task focused, because what is in front of you is an emergency (even though that “task” can be huge and have lots of active parts and layers to it that all need attention, and are all priorities that must be juggled … like managing a large fire 😉  )

Mt Druitt Factory Fire - 2-  28 jan 2011

When managing a large fire, I don’t concern myself with what paperwork is still sitting on my office desk waiting for some attention…but what needs to be done here and now to have the best possible impact on the situation.

However, being back at work for a few shifts, and attending to a few things at work that would not normally be part of my responsibilities really drew my attention to the fact that my focus has been really narrowed (and rightfully so) for months now, including my focus at work..  all essentially since Samuel went to hospital at christmas time.

Seeing the contrast


Noticing that my world has shrunk really highlighted the contrast to even the relatively recent past.

Dealing with Samuel and all his problems has been a constant for just over seven years.. sometimes needing periods of intense focus on only him but it has been seven years during which there has been a lot going on and I have done many, many things… but when I really stopped and took notice the contrast between last year and this year was significant.

Last year my world was continuing to expand, there were significant things happening that were growing my circle of attention and concern. Things like applying for, succeeding at obtaining, and then travelling for and writing up my Churchill Fellowship. A process that expanded the range of people who I was in touch with right across the globe. The Churchill Fellowship and a couple of projects happening for the Samuel Morris Foundation were setting up a great potential to significantly affect the numbers of children and families that are affected by non-fatal drowning. (This potential is obviously still there… just delayed)

This year, everything has been focused on Samuel and many other things have been allowed to slip by… I have not been talking to as many people, in fact the circle of contact with people has been incredibly narrow and limited. I have not been thinking about a whole range of issues that would normally concern me in a broad strategic or global perspective.

Of course it is perfectly legitimate and expected that my focus is on Samuel and the family, and I would not want it any other way.. but it was an interesting moment to have my attention drawn to the contrast.

The courage to continue….

I have mentioned before the issue of courage… The current situation continues to be full of uncertainty, and thoughts about where things are heading can still be confusing and there are still so many “what if” scenarios and issues…

However thinking about the contrast between last year and this year brought to mind a relevant quote.. by who other than Sir Winston Churchill (rather apt, seeing as how it
is as a result of his legacy that some of my opportunities to expand were provided)…

“Success is not final, failure is not fatal: It is the courage to continue that counts…”

Samuel keeps showing that courage.. so should we…. adapt and overcome!

When things don’t go as expected

As always Samuel glows

As always Samuel glows

I previously talked about the degree of difficulty we are facing with Samuel, about being in Limbo, about things being slow and steady and about dealing with ambiquity.

Several times along Samuel’s journey things have happened with a sense of urgency, but then……..

Things don’t go as expected…

Right at the start the sense of urgency was about being ready for Samuel to die in intensive care, then when the respirator was disconnected things did not go as expected and he did all the work on his own, setting off what has been a seven-year long journey of discovery.

Then as things progressed a number of problems emerged and lots of discussion occurred around what was to be expected… and things never went as expected. Samuel always decided to things better or worse than expected. If there was a rule book, Samuel was prepared to break the rules and work outside all expectations.

Samuel’s lungs deteriorated, due to the Scoliosis and repeated pneumonia’s and there was a lot of discussion about his capacity to get through the corrective surgery to rod and fuse his spine. There was a very clear expectation that Samuel might not make it through the surgery and/or post surgical period … but he did.

We have had significant periods of deterioration in Samuel’s health and sincerely expected that he would not see his seventh birthday… then his eighth and then his ninth…. but again Samuel has not done what has been expected.

Recent expectations

Samuel clearly deteriorated over the past months with repeated hospitalisation for pneumonia, changes to the bugs, not responding to treatment. I posted about looking for the fire in his eyes, and waiting for the spark.

Samuel was moved to Bear Cottage with an expectation that things would progress rather quickly….

What has happened?

A lot.. but not a lot is the fair summary. As mentioned in earlier posts there are little signs of progress with Samuel. He is looking extremely pale on and off, he is working hard with his breathing on and off, his secretions are getting thicker, he is clearly in more pain more often, he is having increased seizure activity here and there and he is gagging and needing suctioning more often.

We have ceased Samuel’s pressure support, with an expectation that things would move quicker.. but you guessed it, Samuel decided that without pressure support he would keep up the oxygen levels in his blood overnight just fine thank you very much! (They are not as high as they should be all the time, but they are certainly better than what they were in hospital when he was on continuous pressure support.)

It is clear that things are progressing with Samuel but just nowhere near as fast as anyone expected.

Should we expect anything?

After seven years of experience with Samuel (and six weeks here at Bear Cottage) I guess the one thing to expect is that Samuel will not do as expected, never has and probably never will!

It sounds like another cliché, but the only thing we can expect is to expect the unexpected!

We will simply get on with continuing to deal with the fundamental ambiguity of being human, and watching Samuel decide what will happen and when.

Thanks to everyone who is keeping up to date with Samuel’s progress and asking about what is happening. We appreciate all of your care and support.




Four lines to change your life.

choose your frame!

I’m going to share with you four lines that can form the basis of reframing every aspect of your life… and challenge you to apply them, but first I’ll share with you how I found the four lines…

It’s that Tim Brownson bloke again!

I know this guy, Tim Brownson, a life coach who you can find over at A Daring Adventure, (but before I tell the rest of this story…. you should read my post on Why I hate Tim Brownson to get some context…).

Tim’s reframing competition.

In his usual tantalizing fashion Tim recently ran a competition to give away an Amazon gift card and a copy of a book he coauthored How to be Rich and Happy, with the competition being on the subject of re-framing. As usual I couldn’t resist so I put my entry in the comments (and like he always does…. he made us wait a while to find out who the winner was going to be.)

Announcing the winner!

When I read Tim’s post “this is how you reframe” I was introduced to the Roy Naim… a worthy winner! Roy’s entry was fantastic and was a real journey on how to reframe…. he successfully reframed a day that would have had most people pulling their hair out and turning feral ready to attack whoever next encountered them. NOT Roy…

Anyway there are some great entries attached to Tim’s post… so it is worth a read.

Meet Roy….

But Roy’s genius didn’t just stop there… No Sirree… Roy was engaged in responding to comments about his win, Roy continued to demonstrate the aspects that made his original entry so compelling, and had some nice things to say  about little old me…I’ll be following Roy on twitter!  In one of his comments Roy  shared a quote from the Silva Method which really set my mind wandering…….

The four lines to help you reframe everything in your life!

“If you like it, enjoy it.
If you don’t like it, avoid it.
If you can’t avoid it or choose not to, then accept it.
To accept it, you must change your perception of it.”

Sometimes it is simply amazing how a simple statement can smack you in the head! This quote certainly did that. I reckon Roy has shared four lines that are the basis for reframing every aspect of your life, IF you apply the quote.

What about you?

How could/would you apply this quote in your life? What are you going to reframe?

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