Tag Archives: Resilience

When your world shrinks….

Posted on by
5

 bear_cottage_logo

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.

20130317-212705.jpg

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

5644730280_e8b706f7a2_m

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

Posted on by
9
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.

 

 

 

Looking for the fire in his eyes

Posted on by
7

SamuelSamuel is back in hospital …….

My last post was about where I have been for the past months and I mentioned my son having been in hospital for part of that time (you’ll find the reason for it in the post how did I get here).

The warmth of the fire in his eyes

The thing that has always struck me about my brave little man is that no matter how sick he has been (and he has been incredibly unwell on far too many occassions), I have always been positive and hopeful because he has always had a fire in his eyes.

Samuel has been very sleepy over the past days and has only had his eyes open for a few minutes here and there (one of those occassions captured in the image above). When his eyes are open I find myself desperately looking  in hope for the fire that has always been in his eyes, but right now I’m struggling to find just a spark.

Watching and waiting for the spark

We have had the palliative team involved in Samuel’s care for a while, so conversations about death and dying are sadly way too familiar, but have always been tempered for me by the fire in Samuel’s eyes and the hope that it gives me. 

It is only once before that I have not seen the fire in Samuel’s eyes and it was for a brief time and then the spark took hold and the fire returned to his eyes, but this time it feels different and I cant put my finger on why it feels different. So we are settling in to watch and wait all over again. 

What to do while I watch and wait……

I’ve been doing my best to follow my own advice, like how to sit with sadness, and how to be courageous . So for now I am going to take a leaf from the advice about courage… and I am going put on the uniform of “Dad” knowing what I might be called on for and I am going to keep whispering to myself ….

” I will try again tomorrow”

Welcome to Shitsville… and how to move on!

Posted on by
Reply

Welcome to shitsville….

That’s how I ended a comment on another blog….. What? That’s not very polite I hear you say… and you’re right but it needs some context to understand the comment…

The blog post I commented on was an honest assessment of how Single Dad feels about some recent media around a disability related issue… and the feelings it brought up for him.

Now Single Dad NEVER pulls punches..(and did I tell you he hates idiots.. ) in his post he did a great job of explaining the Shit-o-meter… (and I stole the image from his post.. because I happen to like the GAFoM version). He also did a great job of honestly assessing his own ability on the shitometer, and comparing that to others perceptions and abilities on the shitometer scale.

My comment was about all of us being somewhere on the shitometer scale, and sometimes being at multiple points on it at various points in time. You can find the post here (but I warn you, unless you are willing to confront brutal honesty from both Single Dad and those that comment on his blog, most of whom are dealing with profound disabilities of one sort or another.. don’t follow the link.)

How to get out of Shitsville

If you were in Shitsville I’m sure you would be looking for a way out…. the reality for the vast majority of people for whom Single Dad’s post was relevant is that there is NO WAY OUT OF SHITSVILLE and we will always be sitting somewhere on that scale…  but for everyday folk… it really should be about Giving a F… and putting that needle on the GAFoM gauge at the top of the post firmly into the positive zone?

So elsewhere on this blog there are few suggestions  about dealing with problems and making choices, and how to sit with sadness. 

But it was another post that I read this week that was a great prompt for thinking about how to change the number of your own shitometer.

Irrational questions to ask yourself….

In that post Dan Pink introduced the work of Dr Michael Pantalon PhD (author of Instant Influence: How to get anyone to anything FAST , and Dr Pantalon provided two questions  and some analysis that I think I really useful.. but I’ll adapt them to the circumstances of the shitometer

1. How ready are you change your number on the shitometer, on a scale of 1-10, where 1 means not ready at all and 10 is totally ready?

As per Dr Pantalon’s instructions you MUST give yourself a number.. if your answer really is a 1.. then ask yourself “what would turn it into a 2″.  If you answer yourself honestly.. you have just revealed to yourself what you need to be able to make a change….and what you need to be motivate yourself to do first.

2. If you pick a number that was higher than 2 ask yourself “Why didn’t I pick a lower (yes, lower) number?

By honestly answering question 2 your are asking yourself to defence why your desire to change is the slightest bit important to you, rather than defend your excuses why you won’t do it.. As Dr Pantalon says … The answers lead you to rehearse the positive and intrinsic reasons for doing what you asked yourself which in turn dramatically increases the chances that you will actually get it done…

The book contains plenty of other gems… not put together by your average watch me make a quick buck internet marketing entrepreneur but by Psychological research scientist from Yale School of Medicine, so go buy the book  Instant Influence: How to get anyone to anything FAST to learn some more (and yes that IS an affiliate link, so you if you buy from the link you can help me maintain my coffee habit!)

and… when there really is no way out of Shitsville?

If there REALLY is no way out of Shitsville ….. then I invite you back to my post on sitting with sadness

 

 

Unwinding- the Zen moments

Posted on by
Reply

20111231-164031.jpg

Taking time out and unwinding are important elements of living a resilient life.

I sat and watched the sunset in this photo develop. From bright searing sunshine, through the ” blue hour ” that photographers love all the way to the cool pitch black of the night.

The bonus was that I got to share this time with my daughters and caught some fish as well. I’ve written before about the lessons contained in taking the kids fishing.

How many times have you glanced at a sunset like this one and then immediately dismissed it and moved on because you were too busy?

You need to remember that taking time to stop, pay attention and notice the beauty of these “zen” moments is a vital part of living a resilient life.

What zen moments do you appreciate in life?