NYE sans Samuel

Being present in the moment… The theme of my last post.

New Years Eve is a particular point about being present as everyone counts down to one point in time that they hope is full of promise.

Being present in every moment means being fully present in the moments when my grief wells up as well. So while I explained my New Year’s wish for you and I in my last post.. These are the thoughts that emerged in the lead up to that moment.

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NYE sans Samuel.

Flashing, blinding light
A rainbow of color,
Harbour back drop
Revelers by the thousands,
Marking the passing of the year that was your last.
Counting in the new,
The first,
Of far too many,
That will be marked by your absence.
A new year….
But happy?

 

copyright Mick Morris 2015

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!

 

 

 

 

 

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 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.

That day finally came

Samuel_headshotUpdating Samuels picture..

In the last post I talked about our circumstances and how they felt like being in Limbo. As a family we have bent and bent.. but in some respects we can bend no more.

I have talked about looking for the fire in Samuel’s eyes, the hope of where there is a spark and the degree of difficulty about some of the questions we knew were coming at some point. As I said in one of the other posts I have had an uneasy feeling throughout Samuel’s admission and in many ways we all knew, at least intellectually, that the day was approaching where some tough decisions would need to be made.

Samuel has dictated that those decisions (or at least the first of them) needed to be made today, knowing it was coming intellectually is still no preparation for the reality and the emotion that hits you when the decisions actually need to be made.

Our incredible teams of doctors

My family will be eternally grateful for the care and guidance that many teams at the Childrens Hospital at Westmead have provided us. Care and guidance that have allowed us to give Samuel the best possible quality of life over the past almost seven years since his accident. That care and guidance continued today with Samuel’s pediatrician taking a big chunk of time to sit with Jo-ann and myself and talk through everything that has happened and to spell out his concerns about the capacity to continue to give Samuel a meaningful quality of life and the very real indicators that Samuel has very little fight left to give, along with his wish to continue to do the right thing by Samuel and us as a family.

I have no doubt that the conversation we had this morning is one of the hardest that a doctor ever has to have, but in his usual fashion Samuel’s main doctor did it in the most caring and respectful way humanly possible.

That conversation was the first a few very tough ones necessary throughout today to beginn to layout the plan to make Samuel’s last days as special as they can possibly be, to make sure that he remains as comfortable as possible and that he is always surrounded by his family and people that love him.

What does the plan look like?

Part of that plan is to stay at the Children’s Hospital at Westmead for the next few days while the first steps and changes to Samuel’s care plan are made, and then to move over to Bear Cottage.

The Bear Cottage team has been involved in helping to look after Samuel and the rest of the family over the past few years. They have  provided us much-needed respite and pampering from time to time. It is a warm, welcoming and incredibly friendly place where we will be surrounded by a team of staff that know Samuel and the family well and with whom we have discussed many things about Samuel over the years. We will also be with other families who are at various stages of the journey we have been on with Samuel. We know that the Bear Cottage team will help us make Samuel’s last days as special as they can possibly be.

Sharing the news

There is no right or easy way to talk to your children about the coming death of their sibling. Jo-ann and I are lucky to have two beautiful compassionate young women who love Samuel unflinchingly and unfailingly. Sharing the ongoing changes with them, and then getting home and sitting down with them both to have a very long chat about Samuel and what the coming days may mean was made as easy as it could be by their maturity beyond their years, and their ability to be open and honest about what they are worried about, what they want for Samuel and for us as a family. Jo-ann and I are incredibly proud parents of three children who inspire us endlessly despite the challenges that they have each faced.

Sharing beyond home

Phone calls to a few, facebook updates, a few twitter messages, the message about Samuel and his circumstances has spread far and wide including to many places around the world. How far and wide this network of people extends is an indicator of the impact that Samuel’s life has already had.

Thank You

We are really thankful for all of the messages of love and support that so many people have already sent us, and continue to send us. They are too numerous to thank individually without taking time away from other important things that we need to focus on. So please take this as our thanks to you for your love and support (of which we are sure we will need plenty of over the coming days/weeks).