Homeward bound

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The latest stay at Bear Cottage is drawing to an end….As we pack up, Samuel gets in one last peaceful rest in front of the fishtank.

Homeward Bound

Leaving this time is far more comfortable than at the end of my last stay, after Samuel had decided not yet and going home felt like leaving the hospital for the first time after his accident. This time we continue with the routine established since then.

Heading home, despite the continued challenges that Samuels circumstances bring, is always, always a privilege….

Not everyone has the privilege

Our stay has been a reminder that the beauty of Bear Cottage comes with a very important purpose. During our stay a couple of families have been in the same position as we were earlier in the year.

Like us one family has had a temporary reprieve and has headed home after a six week stay.

Sadly the other family has not and their beautiful little girl died.

I am grateful that the family had access to a place like Bear Cottage to support them, and I hope that the support makes this time as peaceful as it can possibly be for them now and into the future without their child.

Hug them while you have them

Take all those kids that you have in your lives, show them you love, hug them… They may not be here for long..

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.

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.

 

 

 

A genius or just a dumb fish?

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Albert Einstein once said:

Everyone is a genius,
But if you judge a fish on its ability to climb a tree, it will live its whole life believing it is stupid.

So when you talk to yourself, or indeed when you think about others, is your internal dialogue setting the benchmark in a way that acknowledges your own or their level of genius, or are you setting yourself or them up to feel like a dumb fish?