Exploring Resilience via Lifes Burning Issues

Tag: disability (Page 1 of 2)

The saddest duty of life.

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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.”

 

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.

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