Truth behind the mask

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You see me with a smile and a joke, you see me making the most of tough circumstances, and you see me propping up others. In fact you often compliment me on how I have handled the circumstances that got me here and the saddest duty in life. You congratulate me on the work that I do professionally and as a volunteer and the influence it has. You tell me what a difference that makes, you tell me of the lives it has probably saved. You tell me you admire me. You see a dogged and determined person, you see me as a success.

Sometimes you see me wearing a mask.

Picking a mask

You don’t see me picking my mask…. slipping it on to present to the world. Picking a mask to protect, to hide, to conceal.

You don’t see the feeling of abject failure, you don’t see the pain that racks every joint of my body. You don’t see the weight sitting in my shoulders. You don’t see the fear that rests in my gut. You don’t see me struggling to enjoy little things in life. You don’t see my frustration and the effort it takes to do almost anything.

You don’t see the tears the well in private, the tears that wet my pillow as I drift off to sleep, or the hours of tear filled eyes watching the ceiling in the middle of the night. You don’t see the tears that accompany my solo drives.

Behind the Mask

All those things are currently lurking behind that mask that I choose to show you and the world.

The truth is that lurking behind the mask you see is the deep and dark shadow of depression. A shadow that is currently cast over everything.

It doesn’t matter how successful you may appear to be, depression does not discriminate.

Knowing it…..

I’m fortunate, my training and my history means I recognise depression for what it is…. I’m fortunate to have a wife and children that love me unconditionally. I’m fortunate that I know where to go for help. I’m fortunate that to some extent I know how to sit with my sadness.

I’m fortunate that I know that seeking help is important (as hard as it is to acknowledge that depression has a grip on you and to take that step).. I’m fortunate for a wife that guides in that direction. I’m fortunate that medication has a good effect on my depression. I’m fortunate for a lot of things.

Don’t assume

You just never know what the person in front of you is dealing with behind the mask that they have chosen to wear for you that day. You don’t know what battle they might be facing in private. Be kind, be aware.

Know where to send people…..

LifelineBeyond BlueBlack Dog Institute, SANE

Image Credit for this post Richard Jonkman

Help… It’s hard to say yes

Charles Dickens wrote

No-one is useless in this world who lightens the burden of others

 

Scultpure - "My Boy" by Nathan Sawaya

sculpture – “My Boy” by Nathan Sawaya

People to be grateful for

We are very fortunate to be in a place where people are offering to take care of Samuel to try to relieve the pressure on us and allow us to do a few things together as a couple or as a family, however;

What do you do when someone offers you help out of a sincere desire to help carry the burden?

What do you do when you desperately want to say yes… But you can’t?

It’s a question that has confronted us a bit during our time dealing with Samuel, and one that in recent times has become harder and harder to deal with.

We would love to say yes to those offers, and we feel bad when we have to knock back those kind offers.

The context of saying thanks, but no thanks…

The context of why it is not possible to say yes is probably difficult for most people to understand, because we have been reluctant to really spell out difficulties that it might entail.

Samuel often needs suctioning to manage his secretions and keep his airways clear. It’s a process that took us a while to learn and to become comfortable with at the start of our journey. It was also the feature of caring for Samuel that was a major contributor to the difficulties of continuing to be able to send him to school.

Attendant carers needed to be taught how to suction Samuel, a process that would take anywhere up to four hours per carer… But what we couldn’t teach them quickly, or help them become comfortable with, are the signals that Samuel gives in the lead up to needing to be suctioned. If you miss those signals then Samuel will quickly be in the process of choking and this immediately poses the risk of him aspirating. If he aspirates this quickly leads to the onset of pneumonia and all the associated problems that he has experienced repeatedly, and the current reality is an aspiration and pneumonia is highly likely to be fatal.

Another complicating factor with caring for Samuel, or with having someone else care for him, is the existence of some advanced care directives that are in place and what they mean for people caring for him. These directives mean certain things for what the Ambulance service have been asked to do or not do, and in the event that he does go to hospital what care will be provided for him by his Doctors. Despite these being in place our experience is that it is still necessary to advocate for Samuel to make sure that these directives are met, as they may not appear in the information that is given to the Ambulance Officers while they are en route to our place.

The existence of these orders even has an impact on our ability to utilize professional respite services that have been involved Samuel’s care for quite a while, as there is some conflict between their agencies perceived duty of care and the details contained in these directives.

We would not want to place people who sincerely want to assist us in a position where Samuel’s care is precarious and they might have to advocate with Ambulance officers to ensure that our wishes for Samuel’s care and treatment are carried out all in a situation that is highly likely to be unfamiliar to them.

As a result we are extremely reluctant to leave Samuel in a position that could see him inadvertently suffer more by being subject to aggressive interventions that are not wanted, and extremely reluctant to put our friends in a position where this might occur to them.

What does help?

There are however many ways that people have been and can continue to ease the burden during this phase of our lives. The little things that people do, the phone call, the message, the sincere question we when bump into each other.. The acknowledgement that you don’t know what to say (the truth is that there is nothing that can be said…), the joke shared, the cuppa shared, please remember …..

Thousands of candles can be lighted by a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.

Each of those little things helps keep our candle burning……….

 

 

When your world shrinks….

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Back to Bear Cottage…

After all the difficulties with Samuel he has been home for two weeks. Samuel and Jo-ann have returned to Bear Cottage… but that is not a worry or cause for concern.. it’s planned…. Jo-ann will be a little spoiled as Bear Cottage holds their mother’s day camp” giving some pampering to her and some other extremely deserving mums.

The return to Bear Cottage will actually act a bit of a circuit breaker for all of us.

Jo-ann gets pampered, Samuel gets some more care and attention from the lovely staff (and we get a bit of a progress check about Samuel from the staff, they are more likely to see any significant changes in Samuel, having had a couple of weeks break since they last saw him).

The girls are at home with me…  back to school for them both and a bit of pressure off for them around home too.

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What has happened with Samuel at home?

Not all smooth sailing and things still don’t go as expected.

Some days have been horrendous, where it has been almost impossible to keep him comfortable no matter what drugs we are able to give him and other days he has simply slept his way through the day without a noise.

A worrying development was having Taylor home from school, completely wiped out by a bad head cold… which spread to Tanja and then having both girls home from school. It was inevitable that Samuel would come down with it.

Samuel’s secretions started to thicken up and go a bit off colour, he has needed a lot of suctioning and all of this started to trigger a large dose of worry for Jo-ann and I.. what would it mean for him?

We don’t really know. He continues to do weird things.. one minute his skin feels like it is burning,the next it feels like an ice-cube, but his core temperature has been fine. One minute he is breathing comfortably, the next he is breathing fast and hard.. but his lungs have still sounded mostly clear.

Reflecting on a shrinking world…

The last few days have provided an opportunity to think about what has happened. I realised that what has happened, for me at least, is that my world has shrunk…

Sometimes it is absolutely necessary for your world to shrink and  to become extremely task focused, because what is in front of you is an emergency (even though that “task” can be huge and have lots of active parts and layers to it that all need attention, and are all priorities that must be juggled … like managing a large fire 😉  )

Mt Druitt Factory Fire - 2-  28 jan 2011

When managing a large fire, I don’t concern myself with what paperwork is still sitting on my office desk waiting for some attention…but what needs to be done here and now to have the best possible impact on the situation.

However, being back at work for a few shifts, and attending to a few things at work that would not normally be part of my responsibilities really drew my attention to the fact that my focus has been really narrowed (and rightfully so) for months now, including my focus at work..  all essentially since Samuel went to hospital at christmas time.

Seeing the contrast

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Noticing that my world has shrunk really highlighted the contrast to even the relatively recent past.

Dealing with Samuel and all his problems has been a constant for just over seven years.. sometimes needing periods of intense focus on only him but it has been seven years during which there has been a lot going on and I have done many, many things… but when I really stopped and took notice the contrast between last year and this year was significant.

Last year my world was continuing to expand, there were significant things happening that were growing my circle of attention and concern. Things like applying for, succeeding at obtaining, and then travelling for and writing up my Churchill Fellowship. A process that expanded the range of people who I was in touch with right across the globe. The Churchill Fellowship and a couple of projects happening for the Samuel Morris Foundation were setting up a great potential to significantly affect the numbers of children and families that are affected by non-fatal drowning. (This potential is obviously still there… just delayed)

This year, everything has been focused on Samuel and many other things have been allowed to slip by… I have not been talking to as many people, in fact the circle of contact with people has been incredibly narrow and limited. I have not been thinking about a whole range of issues that would normally concern me in a broad strategic or global perspective.

Of course it is perfectly legitimate and expected that my focus is on Samuel and the family, and I would not want it any other way.. but it was an interesting moment to have my attention drawn to the contrast.

The courage to continue….

I have mentioned before the issue of courage… The current situation continues to be full of uncertainty, and thoughts about where things are heading can still be confusing and there are still so many “what if” scenarios and issues…

However thinking about the contrast between last year and this year brought to mind a relevant quote.. by who other than Sir Winston Churchill (rather apt, seeing as how it
is as a result of his legacy that some of my opportunities to expand were provided)…

“Success is not final, failure is not fatal: It is the courage to continue that counts…”

Samuel keeps showing that courage.. so should we…. adapt and overcome!

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.

 

 

 

Looking for the fire in his eyes

SamuelSamuel is back in hospital …….

My last post was about where I have been for the past months and I mentioned my son having been in hospital for part of that time (you’ll find the reason for it in the post how did I get here).

The warmth of the fire in his eyes

The thing that has always struck me about my brave little man is that no matter how sick he has been (and he has been incredibly unwell on far too many occassions), I have always been positive and hopeful because he has always had a fire in his eyes.

Samuel has been very sleepy over the past days and has only had his eyes open for a few minutes here and there (one of those occassions captured in the image above). When his eyes are open I find myself desperately looking  in hope for the fire that has always been in his eyes, but right now I’m struggling to find just a spark.

Watching and waiting for the spark

We have had the palliative team involved in Samuel’s care for a while, so conversations about death and dying are sadly way too familiar, but have always been tempered for me by the fire in Samuel’s eyes and the hope that it gives me. 

It is only once before that I have not seen the fire in Samuel’s eyes and it was for a brief time and then the spark took hold and the fire returned to his eyes, but this time it feels different and I cant put my finger on why it feels different. So we are settling in to watch and wait all over again. 

What to do while I watch and wait……

I’ve been doing my best to follow my own advice, like how to sit with sadness, and how to be courageous . So for now I am going to take a leaf from the advice about courage… and I am going put on the uniform of “Dad” knowing what I might be called on for and I am going to keep whispering to myself ….

” I will try again tomorrow”