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

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

That day finally came

Samuel_headshotUpdating Samuels picture..

In the last post I talked about our circumstances and how they felt like being in Limbo. As a family we have bent and bent.. but in some respects we can bend no more.

I have talked about looking for the fire in Samuel’s eyes, the hope of where there is a spark and the degree of difficulty about some of the questions we knew were coming at some point. As I said in one of the other posts I have had an uneasy feeling throughout Samuel’s admission and in many ways we all knew, at least intellectually, that the day was approaching where some tough decisions would need to be made.

Samuel has dictated that those decisions (or at least the first of them) needed to be made today, knowing it was coming intellectually is still no preparation for the reality and the emotion that hits you when the decisions actually need to be made.

Our incredible teams of doctors

My family will be eternally grateful for the care and guidance that many teams at the Childrens Hospital at Westmead have provided us. Care and guidance that have allowed us to give Samuel the best possible quality of life over the past almost seven years since his accident. That care and guidance continued today with Samuel’s pediatrician taking a big chunk of time to sit with Jo-ann and myself and talk through everything that has happened and to spell out his concerns about the capacity to continue to give Samuel a meaningful quality of life and the very real indicators that Samuel has very little fight left to give, along with his wish to continue to do the right thing by Samuel and us as a family.

I have no doubt that the conversation we had this morning is one of the hardest that a doctor ever has to have, but in his usual fashion Samuel’s main doctor did it in the most caring and respectful way humanly possible.

That conversation was the first a few very tough ones necessary throughout today to beginn to layout the plan to make Samuel’s last days as special as they can possibly be, to make sure that he remains as comfortable as possible and that he is always surrounded by his family and people that love him.

What does the plan look like?

Part of that plan is to stay at the Children’s Hospital at Westmead for the next few days while the first steps and changes to Samuel’s care plan are made, and then to move over to Bear Cottage.

The Bear Cottage team has been involved in helping to look after Samuel and the rest of the family over the past few years. They have  provided us much-needed respite and pampering from time to time. It is a warm, welcoming and incredibly friendly place where we will be surrounded by a team of staff that know Samuel and the family well and with whom we have discussed many things about Samuel over the years. We will also be with other families who are at various stages of the journey we have been on with Samuel. We know that the Bear Cottage team will help us make Samuel’s last days as special as they can possibly be.

Sharing the news

There is no right or easy way to talk to your children about the coming death of their sibling. Jo-ann and I are lucky to have two beautiful compassionate young women who love Samuel unflinchingly and unfailingly. Sharing the ongoing changes with them, and then getting home and sitting down with them both to have a very long chat about Samuel and what the coming days may mean was made as easy as it could be by their maturity beyond their years, and their ability to be open and honest about what they are worried about, what they want for Samuel and for us as a family. Jo-ann and I are incredibly proud parents of three children who inspire us endlessly despite the challenges that they have each faced.

Sharing beyond home

Phone calls to a few, facebook updates, a few twitter messages, the message about Samuel and his circumstances has spread far and wide including to many places around the world. How far and wide this network of people extends is an indicator of the impact that Samuel’s life has already had.

Thank You

We are really thankful for all of the messages of love and support that so many people have already sent us, and continue to send us. They are too numerous to thank individually without taking time away from other important things that we need to focus on. So please take this as our thanks to you for your love and support (of which we are sure we will need plenty of over the coming days/weeks).

 

 

In Limbo….

 

 

 

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In the last post I talked about the degree of difficulty about some of the decisions that are heading our way in deciding how to care for Samuel.

What is happening with Samuel now ?

Not much has changed since the last post. Samuel’s antibiotics have been changed trying to deal with the mutation in one of the bugs that have colonised his lungs, and they seem to have had a bit of success (depending on how you define success in these circumstances), but the options for antibiotics now are extremely limited.

Samuel has had periods of being awake and relatively alert, however he remains sleepy overall and having continued periods of “desaturation” (decreased oxygen in his blood) despite being on increased pressures on his BiPap. His heart rate has been somewhat erratic, fluctuating up and down, and when he goes to sleep slowing down to rates much slower than we have ever seen. He does not seem to be moving his chest much when he is desaturating and does not seem to moving much air (in other words it looks like the BiPap machine is doing most of the work for him when he is in these periods).

In the past when Samuel has been “on the mend” we have had increasing periods of time with him tolerating being off his BiPap without desaturating, with these periods increasing as the length of his admission has gone along. This time he is not tolerating any time of his machine.

The continuing question….

What does it all mean now?

It really does look like Samuel is getting worn out and tired and that his body may be beginning to give up the fight, but there are still no real answers to what it all means. There are not crystal balls, and even the Doctors, despite acknowledging that things are not looking good and may not get better, keep referring to Samuel’s history of looking grim and then bouncing back.. but they just don’t know.

The only good news is that Samuel does appear to be comfortable and not in a lot pain (or at least not giving us the signals he usually does when he is in pain)

It feels like Limbo…

Being in limbo means being in an intermediate state or place… it’s also a dance/game of seeing how low you go. The game has only two outcomes you bend as far as you can possibly go and pull yourself back up onto your feet… or… you fall over.

At the moment it feels like we are definitely in an intermediate state… and playing the game of limbo.. but our game looks the one in the image above… where we are not only at risk of falling over, but it feels like we are also at risk of bursting into flames!

Where to?

We have choices to make NOW in relation to how much more we do and where we do it. Do we continue to do whatever will be decided at hospital, or do we move into the pediatric hospice environment at the beautiful Bear Cottage, a place that has also done a great job of supporting us as a family since Samuels accident?

While we have been having numerous discussions with our various medical teams.. we have a conversation coming up with our main pediatrician and it really is time to think about a plan.. whatever that means. The reality remains it is all about keeping Samuel comfortable, pain free and to always have one of us present with him.

 

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image credit Steve_W

Degree of difficulty 10.0

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Samuel remains in hospital and the watching and waiting for the spark in his eyes to burst into flame continues.

In a recent status update on Facebook I described the experience being like taking one step forward, three sideways and one back… while adding in a triple somersault in a half pike position.

If that sounds like it is a degree of difficulty of around 9.0 then the thoughts and discussions that we are having have a degree of difficulty of 10.0…..Thinking about issues of death and dying are nothing new on this blog, or indeed new to Samuel’s circumstances. However, with every new twist decisions become more palpable and pressing.

What is happening with Samuel?

It was all looking good, or should I say better. Increased alertness, noise making.. better air entry in both lungs, saturation levels looking ok, blood gas levels ok, and then…..

The temperature spiked, his work of breathing increased.. he went from his nasal Bi-Pap mask back to his full face Bi-Pap mask and his pressures needed to be increased again.. extreme difficulty drawing blood for the necessary tests, blood coagulating very quickly, blood gases being a bit out of whack and continuing problems with his electrolyte levels.. particularly being a bit low on potassium (important for regulating things like the heart rhythm).. and he has less of the life and spark in his eyes again.

Then some results come back and one of the bugs in his lungs has mutated and is becoming increasingly resistant to the antibiotics (which are already in the “last line of defence” category).

What does it all mean?

If only there was a simple answer to that question. What it means is more questions than answers.

I’ve always been interested in the question about what constitutes a good life, but know its time to also contemplate the question about what constitutes a good death?

Where do you look for advice like that?

Our experience with all of Samuel’s doctors and nurses at the Childrens Hospital at Westmead (CHW) has been an overwhelmingly positive one, and they are all doing what they can to sit with us and discuss questions about what is happening to Samuel, what it means and the type of decisions we may have to make.

The World Health Organisation defines palliative care as “the active and total care of the child’s body, mind and spirit, and also involves giving support to the child’s family”. Our teams at CWH really are doing a great job of meeting this definition.. as they have across the years. The conversations are just becoming more intense, more focused and in some ways more specific around treatment decisions.

There are some decisions that we may be forced to make, and there are some that Samuel or circumstances will dictate and/or take out of our hands.

What is a good and natural death?

We already have, and have had for quite a while an “Allow Natural Death” order in place, limiting the scope of treatment that can be implemented in the case that Samuel goes into respiratory or cardiac arrest.

I have read a fair bit around the associated decision making, including reading the “Decision Making at the end of life in infants, children and adolescents” Policy document of the Royal Australasian College of Physicians, so that I can really understand where some of the obligations, rights and responsibilities of our medical teams are coming from.

It sets out principles including Respect for Life, A duty to act in the best interests of the child, and palliative care, Autonomy and Competence and Right to information and choice. It includes discussion about withholding or withdrawing treatment, It even includes a section dealing with Severe Neuorlogical Impairment.. clearly where Samuel fits.

It talks about quality of life….. and how subjective that issue is.. as conditions progress what really is quality of life??

I’ve also read a few other bioehtics articles around end of life decision making.. some of these involve discussion of concepts like “a life worth living” and “a life not worth living” and “determining thresholds”. as harsh as they sound from a “medical professional” point of view all of the concepts used make sense.

BUT WHAT ABOUT….

It doesn’t matter how much sense all the policy documents and academic bioethics papers make.. what about when it is your child??

Being confronted with the REAL questions about what is the plan from here, what will we consider, what wont we consider, when will we make decisions about different aspects of treatment none of those arguments matter.. it is simply gut wrenching and there are no answers.

I referred to courage again in the last couple of posts… but I don’t know what courage looks like here. Yes I’ll whisper to myself that I’ll try again tomorrow, yes tomorrow we will be thinking about these things again.. the answers probably won’t be any clearer.

Right now the issue is about overcoming my own fear about making the right decisions for Samuel. Decisions that will keep him as comfortable as possible, not allow him to be overly distressed and ultimately to try and make sure that he does not die on his own when that time comes (even though that is something we simply can’t control.)

Then again…

Samuel always has his way, and he is just as likely to turn around, pick up and look at as like “whats all the fuss, let’s go home” (and do this all again some other time!)