I’m fine, no really! Ok who am I trying to fool?

I'm fine

 

I’m fine… no really I am! OK who am I trying to fool?  I’m not OK, but why should I be?

After performing the saddest duty of life I don’t expect to be fine, and the reality is that I am experiencing every single one of the emotions depicted in the image above. Sometimes one at a time, sometimes several at once, and occasionally feeling every one of them simultaneously, and it’s perfectly bloody normal, even if it doesn’t feel normal.

I’m struggling, that’s the truth, but I’d be more worried about myself if I wasn’t struggling.

The hardest part about struggling is the reality that those that I love are struggling too. There’s no escaping it, but it’s hard to give on an empty tank, it’s hard to see them hurt and not be able to do what is needed for them.

Managing the social dance

I’ve written before on social conventions and the dance that goes on around asking someone how they are.. and I’ve lost count of the amount of times in the past weeks that I’ve answered “I’m fine”  to a question… when I really wanted to yell and scream and rally against the inequities of life..

I’ve been reflecting on how prepared people are to hear the truth…. what would they do if I hit them with the truth?

In fact when you ask the question “how are you” to someone, are you prepared to hear what is really happening to them, or what they are feeling.. or are you hoping that you will simply get the polite ” I’m fine” ……

Resilience

As tough as it is to ride this wave of emotion at the moment, I know enough to know it’s normal, I know enough to know that it too will pass (although it will never go away, our love for Samuel was so strong that the pain will always be there to some degree), I know  that I love my family, and my family is tough … we’ve dealt with a lot, and we always bounce back. I know that I am and we are resilient and we will get through.

I know enough to not be afraid to cry.… and to let the tears flow….

I know enough to know that sometimes I have to sit with my sadness

I also know that right now though it feels like I’m about to break……

 

 

image credit @jessicahagy from This is Indexed

 

 

 

The saddest duty of life.

Samuel_headshot

 

In this blog I have told the story of my son Samuel… (how did I get here) and updated his journey along the way in quite a few posts. I have always been inspired by little man.

On 22nd February 2014, almost eight years after his non-fatal drowning that left him with severe disabilities, surrounded by family Samuel finally no longer able to continue his struggle, and as I held his hand and stroked his hair he took his last breath and let go of this life.

The saddest duty of life

Yesterday (7th March 2014) my family performed the saddest duty of life. Laying my little man to rest.  Prior to this we held a Celebration of his life. My family was humbled by the attendance of over 400 people at the celebration, and around 200 that attended his funeral, as well as the many messages from all over the world.

My eulogy for my little man…

These are the words I shared with those that joined us to Celebrate Samuel’s life and joined with us at the funeral.

“When my heart is breaking, and I am missing the presence of Samuel how do I pay tribute to a little man who has taught me so much?

Dr Seuss is claimed to have said  “Don’t cry because it’s over, laugh because it happened”

 It might seem like a strange thing to say while we have been shedding many tears and will continue to do so, but I want to focus on the things that we can laugh about, and smile about as we remember Samuel now and always.

 I will always carry with me the laughs and smiles of putting the key in the front door of our house and hearing Samuel come hop skipping down the hallway with a gleeful DAAAADDYYYY. Of having him leap into my arms, give me a cuddle and then immediately wriggle his way down only to take off and return to whatever it was he was doing.

 I will forever remember Samuel, from no matter where in the house he was, running into the lounge room and standing in front of the TV as soon as he heard the Simpsons theme, and his outrageous laugh as the Simpson family crammed onto the couch, and again as soon as the intro theme was over.. off he went to do whatever he was doing as he didn’t really care about the show just the intro.

 I will remember the times Samuel would wait patiently at the start of a Pixar movie, quiet and still until the little lamp jumped up and down on the big lamp, and Samuel would jump up and down in time with squeals of laughter.

 I will remember the times when Samuel would go very quiet while he was playing and I’d think where is the cheeky little monkey… Only to find him on the lounge down the back with his bum in the air and his head buried under a lounge cushion.. Sound asleep.

 I will remember Samuel fishing, showing great patience… until he decided to bang the rods on the side of the boat and when told to stop just casually looked up and then dropped the rod over the side of the boat (and did it a second time… but with his sisters rod) 

Even when I think of things after his accident I will remember him always doing things his own way. right up until his last breath. If someone predicted something about him.. he would not let that define him. From the start of his accident when they said he probably wouldn’t make the night, and he did…. when they took him off the respirator days later and told us he probably wouldn’t breath on his own and he did… when we went to Bear Cottage in March last year with the news that Samuel was not expected to make it through the weekend.. and he did for another eleven months.. all on his own without the respiratory support that he had needed for a couple of years…. 

 Samuel that was one LONG weekend! 

Even as we arrived at Bear Cottage for the last time with Samuel, he chose his timing, waiting until things had settled down and he was surrounded only by family, and then as I held his hand and stroked his hair he took his final breath and let go of this life.

Not long after Samuel’s accident in a moment of despairing about how we would look after Samuel and what would become of him a work friend said to me   “ unlike almost all of us, what you can now count on is that Samuel will ALWAYS be surrounded by people that love and care for him”.  

I did not know at the time how true that comment would be. Yes he was always surrounded by our family that loved him, but he has also been surrounded by many many people that have shared our love for him and helped to take care of him. 

From his pre-school teachers at Wishing Well that welcomed Samuel back with open arms and hearts after his accident and went on a steep learning curve with us, to the teachers at his big school Kurambee for as long as he was able to attend… to the Doctors and Nurses and other staff and volunteers at the Childrens Hospital at Westmead, to the wonderful nurses,staff and volunteers at Bear Cottage. We can never fully express our thanks to you for embracing our little man, loving and caring for him exactly the way that we wanted him loved and cared for. I know that Samuel has touched many of you and I am glad that some of you were able to join us to celebrate Samuel’s life.

I will never get to know the man that Samuel would grow to become, and my life will always be poorer for that, but Samuel is and always will be my little man.

There is a Poem called the “The measure of man” that begins 

 “Not how did he die, But how did he live,

Not what did he gain, But what did he give

these are things that measure the worth,

of a man as a man, regardless of birth”

In his ten short years Samuel has touched many hearts and minds around the world. We have been inundated with messages from New Zealand, the USA, UK, Ireland, the middle east, South Africa, Sweden and other parts of Europe, from people whose lives had been touched by Samuel in some way.  

Samuel’s story, his strength, his tenacity and his courage through all he has faced has been shared through the work of the foundation created to honour him, the Samuel Morris Foundation. His story has been shared with Learn to Swim and Water Safety teachers, lifeguards, Life Saving Organisations and Doctors through conference presentations in Australia, Ireland, Germany and New Zealand as well as online. With many people sending comments after these events about how much Samuel had impacted on them personally, and how they would be thinking about their work differently as a result.

On Sunday 2nd March, one of those touched by Samuel, the mother of another child living with disabilities after a near drowning organised a balloon release event to be held for Samuel, this was shared via Facebook and again we were amazed at how far and wide the photos of the balloon release came from and the heartfelt messages that people sent with the balloons and photos, many from people we have never had the opportunity to meet, but who were touched by Samuel.

Sharing Samuel’s story has given me the chance to explore subjects, to go places and to build relationships with amazing people that I would never have had the opportunity to do so if it was not for my little man and the strength and tenacity that he put into his almost eight year fight for life.

Samuel has given so much strength, courage and inspiration in his ten short years, there are many of us that can live a long full life and never manage to touch and influence so many people across such a vast distance.

I will never get to know the grown up man that Samuel could have become… but I know that I am a better man because of Samuel’s influence on my own life.

Don’t cry because it’s over, laugh because it happened…..So yes…in time, I will not cry because Samuel’s life here on earth is over, I will laugh because his life happened …. it is not goodbye to my little man, because I will always carry him in my heart.. so for now… it is see you again some time Samuel.”

 

Connect, Renew, Systems

new-year-resolutions

I did not make any new years resolutions for this year.. because I have explored all the ways to guarantee that you fail at your new years resolutions before……and as this post is going up close to the end of January chances are almost 80% of peoples new years resolutions will be done and dusted and consigned to failure pile  (or put off for another “attempt” next year)

I have spent some time reflecting on last year and I guess I could sum it up in one word that I do like  DISCOMBOBULATED.

The whole of last year was a time of confusion, feeling disoriented and out of sorts (if you want the summary then start with my xmas post and work your way backwards through the links. In all honesty it was the worst year since Samuel had his accident and created the reason I am here blogging. It was a year where I felt like I had lost connection with a lot of people and things that are important to me, where a lot of things became stagnant and ways of doing things that had worked for me in the past fell apart…

One thing is certain this year MUST be a lot different to last year. Some of the same stressors, like Samuel’s health will continue to decline and with that will come all the uncertainty associated with palliative care, but among all that uncertainty there has to be renewed hope and forward progress.

What do you do in the absence of new years resolutions?

Without new years resolutions there are only two options… keep doing what you have done… or doing something different.

New years resolutions are out… they fail. So what are the alternatives?

Three Words

number3bnw

For a couple of years I have watched a method used by Chris Brogan called Three Words, in which three words are chosen to provide a framework to create focus and decide goals throughout the year.

What are my three words for moving forward?

CONNECT:  I will be putting much more effort into connecting up with people, making connections between different parts of my life and different things that I read.. asking a lot more questions about how is this connected to that.. what can I do to connect this thing or person with that thing or person.

RENEW:  There are some long-term goals associated with the values that I hold that  stagnated because of life’s circumstances, these projects, goals and connections need renewed effort and focus.

SYSTEMS: I focus on building systems to help me make sure that what ever connections, projects and goals are created or renewed are maintained and built on. Where ever possible I will automate repetitive items or build systemic reminders to keep things on track and make sure that I am as resilient as possible.

What about you?

Have your new years resolutions failed already? Looking to do something different why not try Chris Brogan’s approach… and if you do, what are your three words?

A few follow up posts will be published throughout the year to track progress.

 

Old reliable.. Going analogue

Stuck with silly season brain fade as I return to duty today….

I love my gadgets, but sometimes old reliable analogue technology comes in handy.

So today the digital tools get put down (well most of them) and I’m breaking out the tool that is mightier than the sword (and a lot easier to carry around without getting arrested) and few sticky notes.

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