25 years… where did it go?

25 Years

10 August 2015… an anniversary…..

An anniversary is a Day that commemorates or celebrates a past event that occurred on the same date of the year as the initial event.

This one marks 25 years in my chosen career as a firefighter. 25 years… where did it go?

It is such a significant length of time. So much has happened across that 25 years, and it is with a heavy heart that I can reflect that 25 years represents almost two and a half lifetimes for the one hero in my life… Samuel..my little man, who will forever be 10… and how nothing can ever prepare you for such a loss.

It is also 25 years that has given my family and I a lot… friends, education, stability and a lot lot more.

At the 21 year mark I reflected on some of the lessons learned to that point, and they still hold, so I’ll repeat a few of them with some extras.

Lessons Learned

I have learned how fragile human life is.

I have learned how strong and resilient the human body can be, despite what people and circumstances can do to it.

I have learned how indestructible the human spirit can be. (and sadly learned how the seemingly indestructible spirits of some of the greatest people you meet can be broken).

I have learned that there is always someone willing to help (including when you find it hard to ask for help), and some one willing to watch your back, and how to reciprocate such loyalty and friendship.

I have learned that there is strength in unity.

I have learned that life and death is a matter of millimeters and moments… where each 1 millimeter or  moment in one direction can save a live, and in the other cost a life.

I have learned….. that I have never finished learning…..and never want to.

What for the next 25?

In another 25 years it will not be a post about still working…. none of us know how long we have, in our jobs or in our lives. Very few people get to have careers like this…. but I am sure the next 25 years will have plenty of lessons in it as well.

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.

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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 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.

 

 

 

21st Birthday of sorts

Turning 21..again!

21 st Birthday… I wish, times that by two and you would be closer to the truth… but today is a 21st Birthday of sorts.

If I’m not turning 21 then whats up?

Today is 21 years since I joined the Fire Brigade…

What 21 years in the same job?

There are not too many “jobs” in which someone spends 21 years (or lot more) in these days. But this needs to be looked at in context, and the Fire Brigade has been far more than just a “job”.

I may have been in the Fire Brigade for 21 years, but I have had a number of “careers” already within this time.

I have spent time operationally on the fire-trucks doing the stuff you see firefighters do in the media and loved every minute of it.

I have spent time in Corporate Strategy and project management, I have spent (a short time) in training. I have done specialisations like Rescue and Hazardous Materials. I have spent time in additional roles like being a member of our Critical Incident Support team.

I have also been fortunate to have progressed  in rank to where I am today, an Inspector (for those looking for an equivalency in rank terms, think Major in the Army).

I gained an education… in more ways than one.

I gained a valuable vocational education, but beyond that I have earned three post-graduate degrees and picked up plenty of “life lessons” along the way.

Twenty one years has provided many great examples of leadership (as well as a few how not to lessons on leadership).

I have been shown the true nature of “the firefighter family” when my own families circumstances have been dire [see how did I get here].

Lessons learned

I have learned how fragile human life is.

I have learned how strong the human body can be, despite what people and circumstances can do to it.

I have learned how indestructible the human spirit is, or can be.

I have learned that there is always someone willing to help (including when you find it hard to ask for help), and some one willing to watch your back, and how to reciprocate such loyalty and friendship.

I have learned that there is strength in unity.

I have learned the truth behind a quote that I have never been able to re-find the source for……“Bravery is a single act usually over in minutes, true courage is putting on the uniform every day knowing what it is you might be called upon to do”, and I thank my fellow firefighters and members of other emergency services for putting on the uniform and showing up every day to make our communities safer for everyone.

I have learned….. that I have never finished learning….. and that….

21 does feel like a beginning again..

Just like a real 21st birthday, today is full of hope. I potentially have a long time and a lot more to achieve in this “fire brigade” life, just like when I was turning 21.

I hope the next 21 years (if it lasts that long) is as full of fun, friendship, learning and life that the last 21 has been.

Simply humbled….

As the parent of a severely disabled child life throws many challenges at me. I’m determined to make a difference and make the most out of my families circumstances, yet despite how much I fight I am always finding people who simply leave me in awe!

Two Stories to Inspire

Many of you will have heard of TEAM HOYT a simply inspiring father and son who never let a bad prognosis from the medical profession or life’s challenges stop them from achieving. These guys just blow me away and make me more determined.  If you haven’t heard about them here is a video about them ….

Another person living with a child with a severe disability who touched me today was Claire who blogs at Life with a severely disabled child….. the part of her post Pride, No Prejudice that hit me was….

I am intensely proud of both of my children. And you know what else? It has nothing to do with their academic abilities. It has nothing to do with abilities at all.

And how, pray tell, did that attitude come about, all things considered?

In all honesty, I don’t rightly know. Perhaps it is via an act of grace (or my esoteric views) that I see their brilliance as something that goes beyond what they can do and into what they are. And what are they but human beings living life as best they can, struggling mightily with some things, sailing through others? Definitely, though, they are (as are your children, normal or not) marked for deeper things because of their involvement with disability. Their influence need not be global, or even earthly, to be significant. Their lives are transformative, to themselves and/or to others.”

What about you?

I wonder can you see past the imperfections of those around you and see the value in them no matter how flawed they may appear on the outside?  Who in your life sets an example like Dick, Rick or Claire… Please share in the comments about who they are and why they inspire you…….

and while you are reflecting on the challenges faced by those living with children with a severe disability….. please help me in my plight to do what I can and make a donation to the Samuel Morris Foundation by clicking on the donation button below…..