Never like a shag on a rock

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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 ….

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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.

Slow and steady..

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In the last post I talked about the arrival of that day.

Samuel Four days in…

We have now been at Bear Cottage for four days and it is a slow and steady course we are taking. There have been some changes in Samuel, with increased and thicker secretions, continued lengthy periods of being asleep, some periods of significant increase in his work of breathing, decreased urine output etc. Thankfully so far he appears to be comfortable most of the time and not distressed.

Those expensive machines.. What do they mean now?

We are accustomed to Samuel being hooked up to monitors while hospitalized. Monitors that allow us (along with our observations of how he is going) to be involved in discussions around what actions to take to help make Samuel better, do we add oxygen, do we change machine pressures, do we increase physiotherapy etc etc.

The nature of discussions around those machines and the potential action has changed.. The options now are not about making Samuel “better” but around making sure we keep him comfortable. The conversations also include what value or benefit we obtain having the monitors on Samuel at all. Apart from another indicator that shows us that he is deteriorating what do the numbers mean? The monitors are in some ways now a security blanket for us, without any direct benefit to Samuel. We are slowly adjusting to having the monitors off for various periods throughout the day.

Using the best available monitoring tools…

The most important aspect about providing benefit to Samuel is our observations about what Samuel is doing.. Does he appear comfortable? Is his breathing becoming laboured? Is he appearing more exhausted? When those things emerge what do we do about them? The choices then are about giving him medication to relieve the symptoms, rather than reverse the problem.

We have more choices to make around how long we continue with Samuel’s BiPap.

Seeking quality time

The machines all impede in someway the ability to have quality cuddle time with Samuel, and as every moment we have with Samuel is precious for us as a family it is extremely difficult to make decisions to take away things that have helped us care for him, but we also don’t want those things to interfere with our ability to care for and share as possible with him in these changes circumstances.

That hard place…

The choices we have to make do feel like that cliche of being stuck between a rock and a hard place.. Concerned that withdrawing supports feels like we are hastening his death, and concerned that we don’t want him to be in pain any longer than is absolutely necessary.

things to be grateful for

Thankfully we are surrounded by the team at Bear Cottage, all extensively experienced in helping families in our circumstances, and amazingly compassionate in helping is to walk our way through each of the decisions.

We have also been with other families who have been where we are, or are preparing for where we are.

We could not be in a better place than where we are…

Has anyone seen Mick?

That’s a fair and reasonable question… where the hell has Mick been for the past six months?

The back end of this blog has been gathering cyber dust and beginning to fade away to nothing more than a digital memory over the past six months or so….

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I wasn’t really lost (well at least not for all the time I was away)….it’s just that life sometimes requires us to focus our  energy and our priorities and this was certainly the case for me. Where were my energy and priorities focused?

Churchill Fellowship

Part of the time I was away it was because I was undertaking an international study tour as part of a Churchill Fellowship . My fellowship took a solid three and half month chunk, including travel across 7 countries and 11 Cities as well as the thinking, compiling, drafting and editing of my Churchill fellowship report.

I will be eternally grateful for the trust that the selection panels and national executive of the Winston Churchill Memorial Trust of Australia placed in me in providing the opportunity to undertake the study tour. I’ll post some more about my Churchill Fellowship experiences later, including links and some follow-up from my fellowship report.

Family

If you are a previous reader of this blog then you know the background.. if you are new then I urge you to read my post on how did I get here.

Samuel has had about six weeks in hospital during my absence from my blog, and clearly this requires a focus on family logistics and connectedness.

The silly season

Yes.. the silly season, all that Xmas and new year stuff got in the way too.

Just bloody tired and worn out…..

Yes this blog is about resilience and dealing with life’s ups and downs…well the reality is part of the absence was also about taking the time and space to let my head empty, take care of myself and allow my internal batteries to recharge a little! Last year was a packed and hectic year (and I’m not expecting 2013 will be any different), so it was important to take some time out too.

Weeding the cyber garden, and planting some new posts!

seedling Yes this blogs cyber garden backend was getting weedy.. Well that is until today anyway… I’m back.

So with some cyber weeding of the blog and a few bits of back-end tinkering here and there I’ve the put the blog garden back in order, and it’s time for some new planting.

 

Get out of the doorway

Please get out of the doorway…

Time for an admission…. I hate it when people stop in doorways. Everything is moving along nicely and then someone stops dead at a doorway… looks puzzled, checks their pockets, scratches their head, turns to say something to someone else..or does one of a thousand other things that could be done before or after getting to the door. It frustrates the hell out me of me. There, I admitted it!

A surprising admission

This might come as a surprising admission.. particularly given that I have previously written about how a doorknob can keep you sane. But these two posts really do belong together.

That piece challenged you stop and think every time you put your hand on a doorknob. However the circumstances  causing me the most frustration are not the doorways with doorknobs, but the automatic doorways in public places… so no chance to put in action the specific little zen challenge contained in that doorknob post!

Turning gut reaction into science!!

Then I find that Professor Gabriel Radvansky of the University of Notre Dame (published in the Quarterly Journal of Experimental Psychology) may have provided an answer as to why this phenomenon occurs.

He found that  “Entering or exiting through a doorway serves as an ‘event boundary’ in the mind, which separates episodes of activity and files them away. Recalling the decision or activity that was made in a different room is difficult because it has been compartmentalized.” His study included a series of virtual and real world scenarios testing memory recall differences between crossing a room and exiting a doorway and in every set of scenarios the act of walking through a doorway resulted in the decline in memory performance associated with the task in that scenario.

I wondered…. is this act of stopping at the doorways triggered by a human gut reaction? Do we instinctively know that after crossing a threshold like a doorway that we will forget something. After all there are many examples of things that people do that have subsequently become the focus of psychological experiments… is this just another one?

What is your experience?

Have you experienced that sudden doorway stop… if so in what circumstances? Are you frustrated when other people do it? Does the Professors research ring true in your experience.. do you experience that memory loss of what you did in one room after you pass through a doorway?

If you are like most of the people I’ve already discussed this with then your answers are all likely YES!

Most people have mentioned the experience of having you gotten up to do something, walked into another room and then stared blankly thinking what did I come in here for? What was it that I was going to do?

Then I thought….

You know what… even if it is an instinctive gut reaction that doorknob post is still relevant….and a bit of a tweak might help to counteract this “forgetfulness” associated with moving through doorways.

So it’s time to update the challenge but instead of focusing on every time you put your hand on a doorknob… the challenge is for every time you approach an open doorway between doing tasks! I encourage you to ask yourself the questions like those contained in the doorknob challenge…..questions such as:

What am I feeling now?

Why am I feeling like this?

What am I about to do?

What is my intention on going through this door?

What is the task that I am going to perform on the other side of this doorway?

Who am I going to meet on the other side of the door?

Am I ready to really “meet” with them, and give them my FULL attention?

Are you up to the new doorway Challenge!

Choose a time-frame, whether it is a particular day or a week and every time you approach a doorway do one of these mini meditations….you never know you might find that your forgetfulness begins to disappear, and you begin to enjoy those mini zen like moments of clarity!

I’d be interested to hear what you think, or how you go at trying the doorknob challenge or this doorway challenge.. you can share your thoughts or experiences below.

A sad reflection on choices.

Gavel by WalknBoston

Gavel by WalknBoston

My Period of Reflection

I have been quiet here for a bit…. and that is because I have been participating in a Coroners Inquest into the drowning deaths of eight children. Each of these deaths is an absolute tragedy. Sadly toddler drowning deaths, and children being left severely disabled by near drowning accidents, occur all too frequently. In the developed world drowning is one of the top three causes of accidental death in children aged 0-4.

Being in the middle of a series of posts on choices, my time in the court was a cause for a great deal of reflection on the subject of choices, and on the consequences that can flow from seemingly harmless choices by a wide range of people.

Systems choices and the perfect storm

The choices that lead to the deaths of these children were not just choices made by parents or care-givers, they were also systems choices made by people . Choices  State Governments to ignore previous recommnedations from Coroners to improve regulation and compliance with Swimming Pool fencing laws. Choices by  local government to not implement inspections and choices to not follow up on development applications. Choices made by real-estate agents in leasing premises without regard to the safety of the pool. Choices made by landlords about what they would and would not repair. Choices made by retailers of swimming pools about what information they provide regarding the safety of swimming pools and the need for them to be fenced and comply with legislation.

Any one of these decisions on their own would seem to be inconsequential, but as happens all too often, numerous choices not to act or choices to ignore result in a “perfect storm” and someone pays the price. Sadly in relation to swimming pools it is often a young child.

The Stigma

Many people often place the “blame” solely on the parents of children who have drowned without looking at the systemic issues involved. I have responded to one Journalist who is against proactive measures to reduce toddler drownings here.  Anyone with children will tell you that you cannot keep your eyes on them 24/7, it is impossible.

Maybe part of the reason it is so hard to effect change in this area is because of the stigma that people place on the parents of a child who has drowned/near drowned, that causes them to be very reluctant to speak out about the circumstances and issues surrounding the event. The additional fear of backlash after telling their story only serves to compound the grief and guilt that they already feel, and it always comes from those who say they ALWAYS watch their children.

Society in General

We all have a responsibility to help keep ALL of our children safe. We all have a responsibility to do what we can to prevent the leading causes of accidental death of our young children………

what would you be prepared to do to help save the life of a toddler……. how would you help stop the tragedy of child  death and disability from drowning….. I’d love to hear your suggestions……..