Small reminders that hurt

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There are so many small reminders that Samuel is gone. They sneak up on you and surprise you with how powerfully they strike.

A mundane thing like receiving our new Medicare cards. Normally you would just open the envelope, have a brief look, take the old one out of your wallet and put in the new one… but not today…..

Today that quick look meant to be confronted with the fact that Samuel’s name will no longer appear on our Medicare cards listed under ours, like it has for so long….. another reminder.

Tanja’s name disappeared, but in the way we expected, the same way Taylor’s name will eventually disappear from our cards, she grew up and became responsible for her own, a chance Samuel will never have.

There are so many rituals and processes to work our way through that will be reminders that our little boy is not here. Always reminders that We are missing our little man.

One is not the loneliest number

One is the loneliest number

Famous song lyrics would have us believe that one is the loneliest number, but that’s a lie.

The loneliest number is actually a formula:

Lonely = x – 1

Where x is the number of members of your family and minus one represents the child in that family that has died…..

That is the loneliest number.

A number that will always be hollow and resonate with the echo of an absence.

Samuel Morris

Samuel Morris 27Aug03 – 22Feb14

Things I’m learning about grief

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After performing the saddest duty of life at Samuel’s funeral life continues… but it is not, and can never be the same.Today marks four months since Samuel died, and I’m learning new things everyday about the impact of his death.  Losing a child has a profound impact.

Many families experience this pain, and there are a few families I know learning the lessons of grief too. A consequence of having a child as special as Samuel is that you get to meet and know a lot of other families with really special kids and this year our network has experienced the loss of a few of these amazing little people, and a few more are struggling with declining health.

I am learning the hard lessons about grief, I am sure there is a lot more to learn, but this is still a new way of life…  so what have I learned so far?

There is no preparation

I am no stranger to death, I have witnessed it many times in my career. However, no matter how prepared you think you are intellectually for the death of those close to you, you can never be fully prepared emotionally for the loss and grief.

Through all of the challenges that Samuel faced, and all the times that we were “prepared” for the fact that he was going to die, there is nothing…absolutely nothing that can prepare you for that moment.

There is nothing that can prepare you for the sheer flood of emotions then, and in the days, weeks and months that follow.

Grief triggers are EVERYWHERE

Yes there are all the “expected” things that you know are going to remind you. I expect to have feelings around photo’s of Samuel, around places that were important in our time with him.

But the reality is that triggers are all over the place, and they can lead to sudden outbursts of emotion, and they happen in places and at times that you least expect them to happen.

I was reading a book that included the detail of some psychology experiments that involved people washing and the impact the act of washing had on thought processes around a separate task… and before I knew it my mind had jumped to pictures of me washing Samuel for the last time before he died, and washing him after he died… both beautiful memories…. but memories that had me sitting in my office in a flood of tears, overwhelmed by a deep feeling of loss.

This reaction has been triggered by songs, by other images, by conversations… by many things.

The pain of a loss is a reflection of love

The words of poet Mark Doty are a beautiful explanation …

grief might be, in some ways, the long aftermath of love, the internal work of knowing, holding, more fully valuing what we have lost. 

You can never regret having loved someone with all your heart, and grief is teaching me just how much love I had and continue to have for Samuel, and it is certainly teaching more and more about Samuel’s impact on my life.

You grieve your past, present and future with them

Some of the grief around Samuel has been with us for a long time, we had to grieve for the little boy he was before his accident, we still grieve for that version of Samuel.

Then there was the “little stream of losses” along the way as Samuel deteriorated and was no longer able to do certain things. 

There’s the now of grieving for him. Missing him, noticing the differences that life holds without him.

There’s the future of grieving from him…. thinking of all those things that he will never be a part of in our futures.

It is messy and it is confusing.

Most people have probably heard about the “stages of grieving” by Kubler-Ross… it’s a useful theoretical model for having an intellectual understanding of grief…. but like my experience of many other models for life “knowing” something does not prepare you for it……. and when it happens it’s not that clear cut…. it’s not stage 1 followed by stage 2 etc etc…. some days it’s every stage all at once, sometimes it’s 5 followed by one followed by 3….. there is no such thing as a linear process of grief it is messy and it is confusing.

Then there is the anxiety that comes with grieving which is not something that the “models of grieving” discuss or have you expect…..the heart palpitations, shortness of breath and other anxiety symptoms that spring out of nowhere as part of the experience of grief.

You cannot compare grief and loss

With the best of intention people will try….. yes, there might be some similarity in the events, and there is certainly the shared experience of broken hearts and loss….. but each and every experience is different.

They didn’t lose Samuel… they didn’t have the relationship with him that is unique to me, the relationship that is unique to Jo-ann, or the relationship that is unique to Tanja or Taylor.

Grief is a unique and individual experience… I can’t compare my experience of it with my own wife’s experience due to the differences in the relationship between a mum and a dad and their child, we are all grieving but by necessity have to do it in our own way that honours our unique experience and relationship with Samuel

So there is no way I could even begin to comprehend another families grief and loss… I can sympathise with the sense of loss and the broken heart but I will never know what it feels like to have lost their unique child… and they will never know what it is like to have lost Samuel.

There are days when you will feel totally and completely alone

It doesn’t matter how many people are around, how supportive people are, and even in the midst of family…. the sensation of being completely and utterly alone can hit.. and nothing can shift it.

Time does NOT and cannot heal this wound……

The Rev Graham Long from the wayside chapel put it beautifully in a remembrance ceremony held by Bear Cottage. to paraphrase him

 Time does not heal the wound of losing a child, and nor would we want it too. To heal the wound would be in some way a signal that we have forgotten them, and we never want to forget them. In time scar tissue forms on the heart.. and that scar on our hearts is a reminder that they lived, a scar we WANT to carry with us because of everything it reminds us of.

 

I miss my little man every single day, with every fibre of my heart. Life does go on, it’s not the same, and it never can be…. I will always love him, and carry him in my heart…. and continue to learn to how to grieve for him.

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

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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.

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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.”