So this is Xmas …. But

 

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Missing Samuel’s spontaneous joy…..

So this is Christmas?

So this is Christmas… An opening line to a famous song that you can find below….. and yes I hope it’s a good one, without any fear, and I hope your wars are over……..

But I know that’s not the case for me and it’s not the case for many people.

I’ve written before questioning whether it is really A Merry Xmas and how this season induces a fair bit of Bah Humbug feeling in me.

Carrying the fear..

This whole year has been filled with an undercurrent of fear as my family was given the news that THAT day had finally come for Samuel, and then we dealt with things not going as expected.

We have had to continue dealing with the fundamental ambiquity of being human and every day with Samuel we continue to deal with the quiet, noise and fear. of continuing to care for him.

Capturing the moment.

I love the photo that I have included in this post… it shows the beauty of my little man and the look melts my heart….

But it’s a look that is fleeting, and came at a cost of some pain to Samuel. However it was great to capture this moment… and some beautiful photos of him with his sisters.

The thing I love most about Christmas is the spontaneity and joy of my children…. but I miss that spontaneity and joy in Samuel and this year it is hitting home that I am missing it again.. and knowing that the way he is we may not get to capture the moments like these with him for much longer.

To quote another verse from the song:

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

So even though I will experience the joy of xmas with my family with an undercurrent of fear…. I know that there are still many others far worse off than we are this xmas.

So, yes I still hope that it’s a good one, without any fear … and that your wars are over soon… but if they are not.. then I will be thinking of you too.

The slow boat to China – or cruising through 20 years of Marriage

Mick and Jo

Who are these young people… Me and my beautiful wife back in 1993

Twenty Years

The second of October 1993 to the second of October 2013…A time to celebrate twenty years of being married. Twenty years that feels like it has been a long time, but twenty years that also feels like it has gone by in the blink of an eye.

Twenty years that have been filled with highs, lows and everything in-between. Twenty years that have given us three beautiful children, that have filled us with joy.. and the inevitable sadness of Samuel’s situation.

Twenty years with Jo-ann who is probably expecting me to make a crack about the possibility of being paroled for murder (twice over) by now…[or as a friend put it more politely the other day.. day years married to you Michael, I’m sure she thinks about murder and being paroled every day] …. but no… I’m more romantic than that 🙂 (shhhh stop laughing Jo-ann)

Taking the slow boat to china…

I’m sure you have all heard the term “on a slow boat to China”.. in general use it means something that takes a long time is very slow and may never reach it’s destination. The term also has a few cultural references to romance too with a 1948 hit song by Frank Loesser that has been revised from time to time by the likes of Peggy Lee and Bing Crosby, Bette Midler, Ella Fitzgerald, Dean Martin and many others.

In the romantic sense the term is about wanting to spend as much time as possible with the one that one love…..  and the reality is that I’d be happy to do twenty years with Jo-ann all over again.. and I look forward to spending the next twenty on another ride on the “slow boat to china”… because who really knows that the destination of life is, or when we’ll get there?

But….I’m also playing on words a little…..

The symbolism of twenty years

A twentieth wedding anniversary is represented by China….no not the country! Gifts of fine china are the traditional gift associated with a twentieth wedding anniversary.

It is meant to symbolizes the beautiful, elegant, and delicate nature of your love for one another over 20 years (However, there was no way I was going out to get Jo-ann a nice china dinner set…)

Jo-ann is one who likes symbolism and some of the associated tradition and the romance that it represents … so my gift to Jo-ann for our twentieth wedding anniversary  is this…

Doulton Forever

A Royal Doulton, Fine China Figurine called FOREVER.

I think it is a nice blend of the tradition of China as a twentieth anniversary gift, a reminder of our wedding day (and how damn young we looked!), and that we are on the slow boat to China forever…..

My anniversary message to Jo-ann.

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I Love You… through thick and thin, through the highs and lows. I’m glad you’ve shared the last twenty years with me, I look forward to sharing another twenty with you….[and just so you don’t think I’m getting too mushy… just remember… you’re stuck with me 🙂 ]

 

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.

The ambiguity of being human

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Three weeks along

It seems like a blink but we have now been at Bear Cottage for three weeks and things continue to be slow and steady. It has been three weeks of continued watching and waiting.

I should know not to expect anything concrete in life.. But when they moved us to Bear Cottage it was with a sense that there really was very little time left with Samuel. However in his usual form Samuel has decided to continue to do things in his own fashion and in his own good time.

What Samuel has given me is a lot more quiet time to reflect on life, to read and to contemplate a wide range of things.

The fundamental ambiguity of being human

Impermanence… it’s an issue that we all have to deal with whether we like it or not. Exploring and becoming comfortable with impermanence is a key part of Buddhist philosophy.

One of the books I have read while sitting alongside Samuel’s bed is “Living Beautifully with Uncertainty and Change” by Pema Chodron.

In it she reminds us that

whether we’re conscious of it or not, the ground is always shifting. Nothing lasts, including us.

She also provides great reminder about the conditions we all experience in life and provides some excellent points on exploring the fact that we are always trying to get solid ground under our feet, always concerning ourselves with pleasure and pain, gain and loss, fame and disgrace, and praise and blame; always moving between the various states.

Sitting and watching Samuel for weeks, and as a family trying to keep things together, calm and purposeful, has been great lesson in the movement between all these states.

How to be of service..

I try to be compassionate. A strong reflection on compassion is always accompanied by the question “how can I be of service”?

In the book Pema Chodron also reminds us

Time after time… We will find that we are not really sure what will help and not hurt

As we have been making decisions for Samuel over the past weeks a constant concern has been about making decisions that won’t hurt him. We have made decisions about removing additional pressure support for Samuel, some slight changes in his medication, getting used to changes in his breathing patterns…. Having to accept things that in the past we would not have accepted.

It’s all an experiment

Pema invites is to live our life as an experiment and;

adopt an attitude of “I’m not sure what will help in this situation, but I am going to experiment and try this”. Sometimes the result will be “Wow, did that ever NOT work”, but if it is we have learnt something, and now we can try something different

Samuel’s colour is not what it usually is, he looks a little blue around the lips and nose in the mornings, he is occasionally working harder with his breathing, he is clearly in pain more often.

We are figuring out what works and what doesn’t. We are watching and waiting still but as always we are being guided by Samuel and it’s clear he is going to decide what will happen and when.

Until them we will continue to deal with the fundamental ambiguity of being human in our situation.

Slow and steady..

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In the last post I talked about the arrival of that day.

Samuel Four days in…

We have now been at Bear Cottage for four days and it is a slow and steady course we are taking. There have been some changes in Samuel, with increased and thicker secretions, continued lengthy periods of being asleep, some periods of significant increase in his work of breathing, decreased urine output etc. Thankfully so far he appears to be comfortable most of the time and not distressed.

Those expensive machines.. What do they mean now?

We are accustomed to Samuel being hooked up to monitors while hospitalized. Monitors that allow us (along with our observations of how he is going) to be involved in discussions around what actions to take to help make Samuel better, do we add oxygen, do we change machine pressures, do we increase physiotherapy etc etc.

The nature of discussions around those machines and the potential action has changed.. The options now are not about making Samuel “better” but around making sure we keep him comfortable. The conversations also include what value or benefit we obtain having the monitors on Samuel at all. Apart from another indicator that shows us that he is deteriorating what do the numbers mean? The monitors are in some ways now a security blanket for us, without any direct benefit to Samuel. We are slowly adjusting to having the monitors off for various periods throughout the day.

Using the best available monitoring tools…

The most important aspect about providing benefit to Samuel is our observations about what Samuel is doing.. Does he appear comfortable? Is his breathing becoming laboured? Is he appearing more exhausted? When those things emerge what do we do about them? The choices then are about giving him medication to relieve the symptoms, rather than reverse the problem.

We have more choices to make around how long we continue with Samuel’s BiPap.

Seeking quality time

The machines all impede in someway the ability to have quality cuddle time with Samuel, and as every moment we have with Samuel is precious for us as a family it is extremely difficult to make decisions to take away things that have helped us care for him, but we also don’t want those things to interfere with our ability to care for and share as possible with him in these changes circumstances.

That hard place…

The choices we have to make do feel like that cliche of being stuck between a rock and a hard place.. Concerned that withdrawing supports feels like we are hastening his death, and concerned that we don’t want him to be in pain any longer than is absolutely necessary.

things to be grateful for

Thankfully we are surrounded by the team at Bear Cottage, all extensively experienced in helping families in our circumstances, and amazingly compassionate in helping is to walk our way through each of the decisions.

We have also been with other families who have been where we are, or are preparing for where we are.

We could not be in a better place than where we are…