Things I’m learning about grief

SamuelandI

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.

Searching for the meaning of life

In Douglas Adams “Hitchhikers guide to the Galaxy” we learn that the answer to the ultimate question on life the universe and everything is 42. It’s just a shame that we never did get to find out what the ultimate question was.

It is even funnier that “life the universe and everything” and the number “42” have taken on cult status across the internet, particularly when Adams says he chose the number randomly and as a joke…..

But there are some things in life for which the number 42 does have some significance.

Runner-Medium-2844081490_468598af61-235x350

 

A Marathon?

 

Emil Zatopek, a three-time Olympic Gold Medalist (one of which is a Marathon medal, after he decided to run in the event at the last-minute) said

“If you want to win something run a hundred metres, if you want to experience something run a marathon”

 

Winning or running a marathon?

Our experience with Samuel has been an ongoing mix of sprints and marathons, somethings we have won along the way.. but the marathon of his experience is continuing….

Picking Milestones…

Last year I picked myself up and ran a half marathon.. (13.6 miles or 21.1 km) or what some people want to call a “PIKERMI” (pronounced pee-KER-mee). The name comes from the town that is halfway between Athens and Marathon. The philosophy behind choosing this name, and not calling it a half marathon, is that running  13.6 miles or 21.1 km should not be considered to be a half of anything……

I’m not one to do things by halves….

Doing my first Pikermi was an interesting experiment, but not being one to do things by half I have decided that it is time to really experience something and to run a full marathon….

While running the marathon is not going to teach me the meaning to life the universe and everything…. after all there is a slight miscalculation with the Marathon being 42.195 Km’s (26 Miles), I am sure that true to Emil Zatopek’s advice I am really about to experience something (including a lot of pain as I crank up my training).

100 Days (ish)

When I decided to do my Pikermi I had 60 days until my chosen event…. some called me crazy.. but I got there.

This year I have chosen and event that gives me a 100 day lead in time.

Where and when?

I have chosen the Blackmore’s Sydney Marathon which happens on Sunday 22nd September (a little earlier than originally planned.. but other plans have ruled out those events 🙁  )

I’ll keep things up to date with my training with an occasional post on here, and some regular updates on my facebook and twitter accounts….

 

When things don’t go as expected

As always Samuel glows

As always Samuel glows

I previously talked about the degree of difficulty we are facing with Samuel, about being in Limbo, about things being slow and steady and about dealing with ambiquity.

Several times along Samuel’s journey things have happened with a sense of urgency, but then……..

Things don’t go as expected…

Right at the start the sense of urgency was about being ready for Samuel to die in intensive care, then when the respirator was disconnected things did not go as expected and he did all the work on his own, setting off what has been a seven-year long journey of discovery.

Then as things progressed a number of problems emerged and lots of discussion occurred around what was to be expected… and things never went as expected. Samuel always decided to things better or worse than expected. If there was a rule book, Samuel was prepared to break the rules and work outside all expectations.

Samuel’s lungs deteriorated, due to the Scoliosis and repeated pneumonia’s and there was a lot of discussion about his capacity to get through the corrective surgery to rod and fuse his spine. There was a very clear expectation that Samuel might not make it through the surgery and/or post surgical period … but he did.

We have had significant periods of deterioration in Samuel’s health and sincerely expected that he would not see his seventh birthday… then his eighth and then his ninth…. but again Samuel has not done what has been expected.

Recent expectations

Samuel clearly deteriorated over the past months with repeated hospitalisation for pneumonia, changes to the bugs, not responding to treatment. I posted about looking for the fire in his eyes, and waiting for the spark.

Samuel was moved to Bear Cottage with an expectation that things would progress rather quickly….

What has happened?

A lot.. but not a lot is the fair summary. As mentioned in earlier posts there are little signs of progress with Samuel. He is looking extremely pale on and off, he is working hard with his breathing on and off, his secretions are getting thicker, he is clearly in more pain more often, he is having increased seizure activity here and there and he is gagging and needing suctioning more often.

We have ceased Samuel’s pressure support, with an expectation that things would move quicker.. but you guessed it, Samuel decided that without pressure support he would keep up the oxygen levels in his blood overnight just fine thank you very much! (They are not as high as they should be all the time, but they are certainly better than what they were in hospital when he was on continuous pressure support.)

It is clear that things are progressing with Samuel but just nowhere near as fast as anyone expected.

Should we expect anything?

After seven years of experience with Samuel (and six weeks here at Bear Cottage) I guess the one thing to expect is that Samuel will not do as expected, never has and probably never will!

It sounds like another cliché, but the only thing we can expect is to expect the unexpected!

We will simply get on with continuing to deal with the fundamental ambiguity of being human, and watching Samuel decide what will happen and when.

Thanks to everyone who is keeping up to date with Samuel’s progress and asking about what is happening. We appreciate all of your care and support.