Exploring Resilience via Lifes Burning Issues

Tag: Patience (Page 2 of 7)

So this is Xmas…. Again.

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Two years ago at xmas time I exposed my grinchiness in my xmas post (although it was no surprise to those that know me well 🙂 ) and challenged those for whom the year had been lucky to think about a way to ease the burden of those less fortunate.

Last year I wrote So this is xmas…. but, as we celebrated xmas with both a sense of fear and anxiety about Samuel’s declining health, and I quoted a verse from the song “so this is xmas”….

And so this is Christmas
For weak and for strong
For rich and the poor ones
The world is so wrong

Now I am thinking so it’s xmas time….. again… and just how wrong the world has felt this year after conducting the saddest duty of life, getting too well acquainted with the grief of losing a child, figuring out that one really isn’t the loneliest number, revealing the truth of depression hiding behind the mask and looking for little signs and dealing with different reminders.

That is not to say that it has been a completely bad year as there have been a few bright spots, like the sibling carer awards for Taylor, a win on behalf of the Samuel Morris Foundation in the Local Business Awards, and a 21st Wedding anniversary with a beautiful, strong and determined woman, delivering a couple of conference key note addresses and taking a nice holiday.

So while the year has felt wrong in so many ways…. it is a year that has also taught me a hell of a lot, and made me think longer and harder about quite a few different aspects of life, love and work.

So this years challenge from me to you, comes via some insightful words I am borrowing from Timber Hawkeye, who runs the Buddhist Bootcamp, so I challenge you to give the following gifts this xmas and into the new year…..

To your enemy, forgiveness. To an opponent, tolerance. To a friend, your heart. To a customer, service. To all, charity. To every child, an example, and to yourself, respect.

So from this grinch, to you and your family… Merry Xmas… be kind to yourself, and those you love and go give those gifts highlighted in the passage above!

 

 

 

 

 

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.

 

 

 

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