A…… Day

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A day of meaning,
and a day of menace.
A day of cultural arrival,
and cultural denial.
A day of celebration,
and a day of decimation.

A day to unite,
that also divides.
Where history is spun,
we are many, but one.
When much of a brief history is spoken,
yet the history of thousands of years is forsaken.

One boat people denying others,
opportunity to join us as sisters and brothers.
When “patriots” drink and brag,
wrapped in the symbolism of a flag,
that carries the flag of another nation,
the seven pointed star of federation,
and the great emblem of the Southern Cross,
that many have tattooed into their skin, embossed.

YES, let’s celebrate this great southern land,
the glorious gift, temporarily held in our hands,
but let us do it so that every day,
for ALL our people, really is Australia Day.

Interests

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Business interests,
Banks interests,
Retail interests,
Industry interests,
Mining interests,
Economic interests,
Governments interests,
Department interests,
Companies interests.
but who is governing for yours or my bloody interests?

Always ask in whose interest?
But, to do so YOU must be interested,
Sure, be disaffected, disappointed,
hold them in disdain, or wish they were all arrested,
but you cannot afford disinterest.

Open your eyes, your ears, your heart and your mind,
look beyond the impress of main stream press,
you might just find that there is plenty of interest,
in whose interests
are being served, by those who proclaim an interest
in your interests,
while making interest
out of your disinterest.

Show your distress, make a noise,
write an email, a letter or post,
stand up, hit the street, protest.
Never lose sight, of yours, your mates,
your neighbours, your communities interests.

Think,take time, give time, help redress,
the imbalance of interests.
Deciding who will govern best,
before you cast your vote, put it through this test.
Whose interests,
will they serve best?

Then take your vote, and invest
in those that will serve the whole of your communities interests,
not just the narrow power or profit interests
of those who previously made their interest
out of your disinterest.

Be interested in interests!

Degree of difficulty 10.0

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Samuel remains in hospital and the watching and waiting for the spark in his eyes to burst into flame continues.

In a recent status update on Facebook I described the experience being like taking one step forward, three sideways and one back… while adding in a triple somersault in a half pike position.

If that sounds like it is a degree of difficulty of around 9.0 then the thoughts and discussions that we are having have a degree of difficulty of 10.0…..Thinking about issues of death and dying are nothing new on this blog, or indeed new to Samuel’s circumstances. However, with every new twist decisions become more palpable and pressing.

What is happening with Samuel?

It was all looking good, or should I say better. Increased alertness, noise making.. better air entry in both lungs, saturation levels looking ok, blood gas levels ok, and then…..

The temperature spiked, his work of breathing increased.. he went from his nasal Bi-Pap mask back to his full face Bi-Pap mask and his pressures needed to be increased again.. extreme difficulty drawing blood for the necessary tests, blood coagulating very quickly, blood gases being a bit out of whack and continuing problems with his electrolyte levels.. particularly being a bit low on potassium (important for regulating things like the heart rhythm).. and he has less of the life and spark in his eyes again.

Then some results come back and one of the bugs in his lungs has mutated and is becoming increasingly resistant to the antibiotics (which are already in the “last line of defence” category).

What does it all mean?

If only there was a simple answer to that question. What it means is more questions than answers.

I’ve always been interested in the question about what constitutes a good life, but know its time to also contemplate the question about what constitutes a good death?

Where do you look for advice like that?

Our experience with all of Samuel’s doctors and nurses at the Childrens Hospital at Westmead (CHW) has been an overwhelmingly positive one, and they are all doing what they can to sit with us and discuss questions about what is happening to Samuel, what it means and the type of decisions we may have to make.

The World Health Organisation defines palliative care as “the active and total care of the child’s body, mind and spirit, and also involves giving support to the child’s family”. Our teams at CWH really are doing a great job of meeting this definition.. as they have across the years. The conversations are just becoming more intense, more focused and in some ways more specific around treatment decisions.

There are some decisions that we may be forced to make, and there are some that Samuel or circumstances will dictate and/or take out of our hands.

What is a good and natural death?

We already have, and have had for quite a while an “Allow Natural Death” order in place, limiting the scope of treatment that can be implemented in the case that Samuel goes into respiratory or cardiac arrest.

I have read a fair bit around the associated decision making, including reading the “Decision Making at the end of life in infants, children and adolescents” Policy document of the Royal Australasian College of Physicians, so that I can really understand where some of the obligations, rights and responsibilities of our medical teams are coming from.

It sets out principles including Respect for Life, A duty to act in the best interests of the child, and palliative care, Autonomy and Competence and Right to information and choice. It includes discussion about withholding or withdrawing treatment, It even includes a section dealing with Severe Neuorlogical Impairment.. clearly where Samuel fits.

It talks about quality of life….. and how subjective that issue is.. as conditions progress what really is quality of life??

I’ve also read a few other bioehtics articles around end of life decision making.. some of these involve discussion of concepts like “a life worth living” and “a life not worth living” and “determining thresholds”. as harsh as they sound from a “medical professional” point of view all of the concepts used make sense.

BUT WHAT ABOUT….

It doesn’t matter how much sense all the policy documents and academic bioethics papers make.. what about when it is your child??

Being confronted with the REAL questions about what is the plan from here, what will we consider, what wont we consider, when will we make decisions about different aspects of treatment none of those arguments matter.. it is simply gut wrenching and there are no answers.

I referred to courage again in the last couple of posts… but I don’t know what courage looks like here. Yes I’ll whisper to myself that I’ll try again tomorrow, yes tomorrow we will be thinking about these things again.. the answers probably won’t be any clearer.

Right now the issue is about overcoming my own fear about making the right decisions for Samuel. Decisions that will keep him as comfortable as possible, not allow him to be overly distressed and ultimately to try and make sure that he does not die on his own when that time comes (even though that is something we simply can’t control.)

Then again…

Samuel always has his way, and he is just as likely to turn around, pick up and look at as like “whats all the fuss, let’s go home” (and do this all again some other time!)

When things are foggy

when things are foggy

A morning fog….

This morning was one of the first days this year that I have woken up to a thick fog, that completely changed the drive to work and it set me thinking about when things are foggy.

Reduced Visibility

Obviously one of the first things that you notice when you wake up to a foggy day is that you can’t see as far as you usually can, your visible world has shrunk. It doesn’t mean that all those things that are usually there aren’t there it’s just that they have become obscured.

When setting off on a trip in these conditions the same applies to your journey, many of the landmarks, signposts and other clues that you would use to help guide you are obscured, but the road is still there and so is your ultimate destination.

A need to change focus

Driving in a fog causes you to change strategy about the way that you choose to light your path. You can’t hit high beam to push your way through the fog, it just causes the fog to appear thicker and brighter and it further reduces your visibility. You can’t just speed up and push your way through it ( well you can but you are just inviting a car wreck!). The fog causes you to change your focus and start looking at clues that are more immediate and closer to you than your usual length of focus. To get the best visibility  you need to use low beam or change the colour of the light you use by switching to fog lights. When you do this the fog becomes less intense and your visibility improves.

When life gets foggy

Many of life’s problems can act a bit like a blanket of fog. They obscure how much you can see and they hide your destination from you. They cause you to shift focus. Just like driving if you try to switch your life to high beam, or speed your life up to try to push through you just manage to make things less clear or rush headlong into a potential wreck.

Treat life’s fog like driving in the fog

  • slow down
  • reduce the intensity of your focus
  • use landmarks and signposts in your life that are close to you, one’s that you often usually don’t pay attention to you
  • change the way you light up the problem, it might allow you to see a way through that you can’t otherwise

What are your tips for safely navigating through life’s fog? Share them in the comments ….

Life’s ONLY rule

You have to care - it's the only rule in life!

The way I see it life has only one rule……and that is you have to CARE!

How do you express it?

It doesn’t matter how you express it, whether you call it giving a shit, whether you call it stepping up to the plate, rising to the challenge, giving a toss… however you put it there is only one rule that underpins every other rule in life…that is to CARE!

Why caring matters

All the good things in life only happen because somebody cares. (and conversely a lot of bad stuff happens when people don’t care!……remember the quote by Edmund Burke….”all that is necessary for the triumph of evil is for good men (and women) do nothing”  and how many times in history this fact quote has proven correct )

The good things happen because someone cares enough about whatever specific thing it is to do whatever it takes to make something happen. Whether it’s the next big leap in astrophysics… or whether it is picking up the phone and calling to see if you are ok, or leaving a message of support for you on facebook they only happen because someone CARES…..

What about you?

What do you care about and why…… and how do you show it…. share it with everyone in the comments!

image credit: Aunt Owwee @flickr