Friday, September 25, 2015

What is a hero?

I have a beautiful extended family!  You know the type of families that are scattered everywhere but would be there for each other in an instant maybe not in person but certainly on the other end of a phone call or a message, just something to let them know they are loved.  

Jason, Me, My Hubby and Meaghan 

One of my cousin’s Jason has a dear son who is disabled, confined to a wheelchair and we are told terminally ill.  There is no known reason for this that his family can be given it is just one of those really crappy things that happens to some families in life.  They muddle through life as best they can.  The only family holidays they take are short trips to his parents on the South Coast on NSW and to Bear Cottage in Manly.  Life for the family revolves around how well Caleb is as to what they can do as a family.  

This is the story written by Jason’s niece Tea Luppino in 2011.  She was in Yr 8 at the time.

Jess, Tea, Caleb (on Jess' lap), Maya, Asha

Heroes are different to everyone. But this is what I believe one to be… 

My hero is not just my hero though, he’s my whole families. He’s only young, and hasn’t done anything to make him hugely famous, but to us, he’s the best hero we have… 
Caleb Jaxson Heddle was born 22nd March, 2005. He was born a healthy boy, just under 10 pounds and 24 inches in length. He was the second child in the family, with his older sibling being Asha. At 3 months, some things were suspected, his eyes flickered, and he didn’t respond in the way most children do when adults play with them. In October, 2005, he was diagnosed with Congenital Nystagmus. We were all devastated, but my Aunty and Uncle and Grandparents went to a meeting with Vision Australia and they gave hope that Caleb would live a normal life. 

Everything then seemed okay that is, until they came to visit us in the month of May, 2006… Caleb was 14 months old when he came down to visit. He was in my arms when he had his first of many seizures. This was unexpected, and everyone was shocked. He was then hospitalized in Colac and Geelong, and when he was well enough for the trip home to Canberra he underwent a lot of testing. 

It showed that his front and rear lobes of his brain were atrophied (not developed). Subsequent testing hasn’t showed that Caleb has any congenital or hereditary condition. Doctor’s don’t have a proper name for what is wrong with him, but the best guess is that he picked up a virus shortly after he was born, or in the hospital. 
Fundraising, as well of support from family and friends has helped in the cost of a special bed, wheelchair, and renovations around the house. Caleb’s body cannot control his body temperature, which causes seizures. He has to always be warm, but not too hot, or cold either. He is legally blind, and deaf, and attends a special school well he is well enough. He will ever be able to feed himself, and he had a naso-gastric until recently, which he pulled out and now he is just fed mushy food. He won’t ever be able to walk either, so he gets around in his wheelchair. Despite all of this, Caleb has an angel-like smile, and loves to be cuddled by his sisters when he is well, but doesn’t like to be touched at all when he’s sick. 

In mid 2010, Caleb started to regress quite quickly, and in February 2011, we thought we might lose him before his birthday. Luckily, Caleb is still here, but isn’t doing any better. We don’t how much time we have left with Caleb, but each day’s a gift. Asha and Maya both know Caleb isn’t well. Asha is 8, and already knows how life is with Caleb, and even knows what to do when he has a seizure. Maya is 19 months old, and understands Caleb’s condition. She calls him bubby, though he is 6. 
We all think that Maya is double the personality for a normal child her age, and it’s a gift that she is a healthy little girl, although she is quite mischievous, and recently broke her nose running into the couch.  Asha asked if Mum, Dad, Jess and I could come down and take some family photos, because the last one taken Maya hadn’t been born, and she wanted some with everyone because she knows that we don’t have a lot of time left with our special little man. 
Caleb isn’t a hero as such; he is a boy that is fighting for his life. He has had hell on earth, and it isn’t fair. He is our hero, because he is going through all this pain, and still manages to have a smile on his face. 

Caleb with Jason's sister Bec (also Tea's Mum) 

To you, Caleb mightn’t seem a hero. You might think a hero is something Spiderman. But to me, a hero isn’t a model, or a footy player, or a TV host; it’s something as special, as a little boy going through a lot of challenges, and to stay in our life

An update on Caleb is that he just keeps on going on.  Time and time again he defies the medical staff who say it’s time to prepare and yet Caleb is still here with us.  This year he turned 10 which was a milestone no one thought he would make.  The reality is that no one can tell Jason and his family what the progression will be for Caleb and that could partly be because they really just aren’t sure what is happening.  They do know that Caleb’s life won’t be a long one, but his time with his family is precious and his is a light in all of our lives. 

A recent family photo

Meaghan and Asha when they first got the van in 07

At the moment we are trying as a family to work out how to get Jason and his family back on the rd.  Unfortunately their Van has died.  It needs a completely new engine which is really tough on the family especially as the Van has done less than 60,000kms.  So now instead of a coast holiday for the school holidays they are stuck at home.  Caleb needs to travel in purpose converted disability transport because he can’t hold himself up in a normal seat and now whilst he is well under the weight for a car seat his height and muscle atrophy makes it nearly impossible for him to travel in a normal car seat.  So for now that means that even their much needed respite trips to Bear Cottage are also out until they can get some new transport that is suitable for Caleb. 

Jason with some other Dad's from Bear Cottage about to learn synchronised swimming on a much needed time out Dad's weekend. 

Caleb having a tow behind the boat 

Jason a proud Dad of his son. 

Thursday, September 17, 2015

How long is a piece of string?

When you get sick or injured the first thing that everyone wants to know is how long will it be before you are better?  When you have a physical injury like a broken leg the answer is easy I will have plaster for x time then I will do physio for x time and then I will be back to normal.  When it is an illness that requires surgery and post surgical treatment again typically the answer is still easyish in that there is a fairly typical prognosis and failing any unforseen complications Drs can usually give you a pretty good indication of how long your recovery will take.  
The thing with mental illness is that it is invisible for most people, there are rarely visible scars and there are rarely bandages around our heads to indicate that we are sick or injured and need time to recover, plus some days we might be ok and the next week recovering from being ok.  The other thing with a mental illness regardless of the diagnosis (depression, anxiety, ptsd, bipolar, the list is long and not exhaustive) the treatment and recovery is different to every single person.  Sure there might be a guide that is followed of diagnosis, medication, therapy, hospitalisation, more therapy etc but this is a guide and what works for one person may not work for another with exactly the same condition.  
This is where the treatment for mental illness is so hard because no two people are the same and as such no two treatments can be the same.  A lot of treatments for mental illness require patience from both the Drs and the patient and lots of trial and error to find out what works for you.  Because of this it makes it very hard to say when you will be better or how long it will take.  The other key point is that no-one knows what better looks like, we just know that we don't want to feel this way anymore and better has to be different to the before, because in many cases the before is how we got to here so it is important to make sure that better isn't simply falling back into old habits, but to make sure we develop healthy ways to look after ourselves in the after so that we can avoid going backwards.  That is not to say there won't be times where life gets on top of us and it does feel too hard but hopefully the treatment will have given us the tools to understand this and to be able to seek help sooner. 
So for me in terms of when will I be better, the answer is really how long is a piece of string?  Today, is a good day where I want to get up, where I want to eat, and look after myself and do things for the family, but there are also days where getting better feels far too hard.  I know that is hard to hear for my family but it is true, sometimes life and living feels like it will simply take more energy than I have in my body to give.  For me my breakdown was both mental and physical and I think it was always apparent that the physical recovery was going to be quicker than the mental.  
Physically, I am told and I can read from my journals that I have improved a lot.  I was walking with a drag on my left leg, the strength in my left arm was non existent but now I can drag things around and I can certainly peg washing on the line!  My balance is still a bit off, I had a fall the other day and gave myself a nice blackeye as a result so the walking stick will be my friend for a little while longer I think.  I am not driving I am not sure if that is a physical thing or a mental thing, I know I still hate being a passenger so I am in no hurry to get back behind the wheel and drive.  
Emotionally and mentally my recovery is taking a lot longer.  I am not sure that there is ever actual an end point for mental health recovery, there is no linear track of recovery it is more up and down like a roller coaster hopefully the roller coaster keeps going forward and not backtracking on itself.  What I know from my journals is that there has been some resolutions to things that have occurred over time which hopefully means that part can be put to rest and I will let this go eventually.  This is hard to do when you know that you have hurt people and you are reading about these events and trying to infer emotion and understanding when you can't recall them for yourself.  I can only do my best to assure people this won't happen again and apologise fr my actions. 
When you can't remember things and you are living via reading journals or from other people telling you what happened it is extremely hard to understand the mindset that you were in at the time or why you didn't reach out to others for help instead of internalising it all and self destructing.  This is also part of a burden that I carry knowing that others have had to pick up after me and my mess and that I have disappointed and let down those who love me the most.  For this I am forever indebted to you for that and I love you for everything you have done and continure to do.  Sadly, day to day though my memory has not come back and we are trying hard to work on this.  
Recovery from depression/anxiety/ptsd is going to take a lot longer than anything else.  It took me a long, long time to get to the point where I couldn't cope or pretend anymore so it will take a long time to find my way out of it.  What we know is that the me from the before needs to be different from the me in the after.  The me in the before got me to here so one thing I have read we are working on is understanding that I have limitations.  I crowded my head and life with lots and lots of things so that I left no space for me to process the things I really needed to process.  I put on my happy face and got on with things.  
The parts of me from before that meant that people would often turn to me for help or support are all still there but for now I need to use those to help myself get well.  But to really get well there are lots of things that I have pushed away and haven't dealt with and now is the time I need to deal with them and feel all the feels that go with those events that I have avoided for a long time.  
So in short how am I doing or am I ok, no I am not really ok but I am doing better than I as because I know now that I am not ok and that does not make me a failure.  I have been out to one social event of my choosing which was incredibly hard but nice at the same time and I am getting better at being around people.  Please don't be a stranger I do love hearing from you all.  I hope everyone is doing really well and thank you again for all your love and support. 
Cathy xoxo 

Thursday, September 10, 2015


September 10 2015 is R U Ok day.  

It is a day set aside to raise awareness worldwide about how important a conversation could be in helping to prevent suicide.  R U Ok day started in 2009 in Australia and is focussed around how important making connections with others can be in helping someone to reach out and get help.  
If I am totally honest I am not sure that I would ever have anserwed the question with a no, but partly this was because I really thought I was doing ok.  I figured if I wasn't rocking in a corner and could still basically function then I must be ok and let's face it I had absolutely no rational reason to not be ok.  
Thing is mental illness doesn't work like that, it doesn't discriminate, it isn't rational, and it actually has very little to do whether we think we should be ok or not.  What I have discovered is that regardless of how hard you try you simply can't think yourself happy and that constant worry and fear that something will happen to someone you love just doesn't go away because you want it to.  When you are not ok some of the feelings you can have are pain, emptiness, loneliness, fear, panic, anger, guilt, sadness like you have never felt before and more.  I find it really hard even now to put into words how I am feeling; I will often say I am ok or fine because finding other words to describe how I am really feeling is just simply too hard.  
Typically with all the feelings listed above come physical issues of constant fatigue and headaches and these just add to everything else.  I felt like I simply didn't want to burden anyone else's busy life with my petty problems so I found it easier to be the person that other's would turn to mainly because this would take the focus in my brain off myself onto something else.  
Equally then and even now it isn't for me ever about actually wanting to die as much as it is about wanting to end the pain or to go somewhere where I can no longer feel anything.  Of course when you have depression you are incredibly sad and just want everything to either end, but then when you are also dealing with anxiety you live in a constant state of heightened awareness and are hyper vigilant about everything especially about dying and/or your loved ones dying and you not being there to guide them through life and to be there when they grow up.  So truly in many cases that desire to die is not actually about wanting to die in as much as you just want the pain to end.  
 I thought that as this is something that I am living with at the moment and has always been something that means a lot to me I would put together a little tip sheet on how to ask R U Ok. 

Here are 4 basic steps to think about: 

1.  Before you ask the question make sure that you are in the right headspace for an honest answer; make sure that you have time to listen; and most importantly make sure you really care and are willing to walk alongside someone if they do open up to you. 
2.  Sometimes it is entirely possible that someone might pour out their soul to you and this might include things that you don't want to know or that could change your opinion of the person or even they may have done things that go against your moral code (and quite possibly theirs).  Remember that they are sick and now is not the time for jugdement, they will need your support more than anything right now so if you don't think you can do this perhaps re-think asking the question.  But if you think you can ask and listen with no judgement make sure they know that whatever they tell you is in confidence it takes a lot for someone to open up, this is never easy regardless of how obvious it might be to everyone else they are not ok.
3.  If when you ask the question you do get an honest answer and it is as you suspected they are not ok, you will not be their answer.  They will need your love and support but most importantly they will need professional help.  This might be talk therapy, it may be medication, it may be lots of other things but you will not be the answer, you will be part of the solution but more than anything encourage them to get professional help.  Let them know you will be there for them and will go with them if needed. 
4.  Lastly, once you have started the conversation, the time might not have been right for them to completely open up to you or perhaps the question prompted them to think that you could be the person they can open up to.  So make sure you follow up with them, opening up to someone is can leave someone feeling extremely vulnerable so keeping in touch is very important.  

Lastly if you are not doing ok and you are reading this and feel you have nowhere to turn here are some places in Australia to at least start the conversation.  Remember you are not alone! 


Hey everyone, I'm Cathy and no I'm not ok but I know this now and with lots of love, support and professional help I will get there

Big hugs 
Cathy xoxo 

 Images from