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.

Small Signs

Small signs…

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I don’t ever see dragonflies sitting still, but today when I visited Samuel’s grave I found this little fella keeping watch over him.

Getting up close didn’t seem to disturb it at all and it stayed in the one spot for my whole visit.

The dragonfly has been a part of my experience of Samuel’s death, and part of the experience that reminds me that there are connections continuing.

After I shared the picture above on social media someone sent me a link that provides an explanation about dragonflies as a totem and the history and symbolism of dragonflies, an interesting and thought provoking read.

These are small signs…. I still miss the physical presence of my little man, even though I know and feel that he is around.

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

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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.

 

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 🙂 ]

 

Checking in for check out and check up…

Our seven and a half-year roller-coaster ride since Samuel’s accident has had moments of intense highs and intense lows, but there is one constant throughout the whole time……

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Jo-ann lives the experience twenty-four hours a day, seven days a week, with very little down time to help recharge her batteries. I am lucky that I get a change of scenery through going to work, foundation meetings etc etc, but for Jo-ann it is a constant.

I really admire how much Jo-ann has put up with and how she continues to get on with it, no matter how much it hurts her.. and it hurts a LOT ….

She’s been told to check out….

Check out of home that is…

As things have happened for Samuel we have been in regular touch with Bear Cottage and really appreciate their continued help in discussing things with us and it remains a comfort, knowing that they are there to support us and ready to have Samuel and the family back at a moments notice.

In their usual fashion they have made some space available for Samuel and Jo-ann.

Jo-ann and Samuel are checking in…..

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Jo-ann and Samuel are checking into Bear Cottage today to give Jo-ann a few days where she really does not have to focus on the needs of the whole family, can leave most of Samuel’s care to the wonderful staff and really concentrate on unwinding and recharging.

Samuel gets a check up

While Jo-ann unwinds, it is also a good opportunity to have a check up on where Samuel is up to.

We see Samuel day in day out, yes we see changes and we notice things, however the Bear Cottage staff will have a few days to watch him, catch up on what is happening for him and assess where they think he is up to. That will be useful to us the staff will have an update appreciation of Samuel’s condition and be more attuned to him when we make those phone calls saying HELP… what do we do now.

The girls get stuck with Dad.

There has to be worse fates…. (but you’ll have to ask the girls what they might be :-] ) but the girls are stuck at home with Dad so they can continue to go to school… might have to come up with a LONG work list them…