Brave Warrior

12 months ago, the world lost a star that shone so bright that in the time we all took to shelter our eyes from his brilliance, he was called home to the Angels.

On the 19th September 2014, at just 4 years of age, little Talon lost his battle with Idiopathic Pulmonary Arterial Hypertension.

I am sitting here in my lounge room, trying desperate to think of the right words to honour his memory, and it's hard.  How can I explain to you all the connection I saw between Julian and Talon?  How proud I felt watching my own 14 year old son finally find his own personal hero in a little boy 10 years younger than him?

Should I tell you about the first time I attempted to chat with this shy little human, and how I had to resort to bribery in the form of chocolate brownies?  Should I tell you how he looked at his Mum and Dad as if to say "Who on earth is this woman?  And can I have a brownie?"

Should I tell you about the too short amount of time Jules and Talon visited in the hospital, when they were both admitted on the same ward?  And how Talon finally came out of his shell when Julian found a way to connect with him?  Card tricks.  Clearly my brownies stood no chance again the magic of my own son!

Should I tell you how Julian's attention transformed from a shy little boy to a chatterbox?  How I felt a lump in my throat when he started to show me his fire truck?  How proud I was as a mother when I watched Julian teach him how to grit his teeth and growl "Just do it!" when the nurses had to do a blood test?  The connection I felt with his own Mum, while we watched our soldiers, both big and small, grinning at each other with the same glee only boys can grin with?  You know that cheeky grin I'm talking about.

Should I tell you how Talon's favourite nurse is Julian's favourite nurse?

Or should I tell you how my chest went cold and my heart stopped for a while, only to start pounding so hard I could hear it's echo in my ears when I read the devastating news that Talon had lost his battle, that his too small body had let go of this life?

I'm finding it so hard to find the right words to tell you all how it made me feel to watch him, in that short amount of time, fight with all his heart.  He was such a brave boy and an enormous inspiration to Julian, who said to me when we left the hospital "Mum, he's my hero.  He's so brave.  I've never met anyone like him, I can't wait to watch him grow up.  He reminds me of me at that age."

Talon, thank you.  Thank you for opening your heart to Julian.  Thank you for your friendship with him.  Thank you for being fascinated by Julian's card tricks.  Thank you for helping Julian to remember why he fights IPAH every day.

Thank you for the smile that reached your eyes, lit up the room and brought an answering smile to everyone's lips.

Thank you for showing us what it means to be brave and fight on even when we're too tired to join the battle over and over again.

Julian and the loss of my brother

A couple of days ago, Mum asked me how Julian was coping with my older brother’s passing, and I had to take a few minutes to think about it.  To be honest, I’m not really sure.  Given the fact that he and I have been at loggerheads these past few weeks, I’d hazard a guess that it’s not fantastic.  The problem here is that, he won’t talk to me about it and I’m left wondering if I should push him to talk or leave him be . . .

I’ve decided to leave him be.  He’s seeing his psychiatrist this afternoon, so he may feel more comfortable talking to her.

I’ve also decided that this time around, I need to focus more on myself than on Julian.  I know he has lost his Uncle, but I have lost my big brother.  As you grow older, you can sometimes lose the closeness you had with your siblings, especially when you have families on your own.  Unfortunately, this happened with Robert and I, especially over the last few years, and there’s a certain amount of regret coupled with my grief.

Robert was a huge inspiration to Nigel and I when Julian was diagnosed.  He was born with a Congenital Heart Defect called ‘Secondary Pulmonary Hypertension’ caused by ‘Eisenmongers’, and also developed another condition called ‘Polycythemia’.  Our father and his mother were told that the chances of surviving his childhood were virtually non-existent, and yet he went on to be one of the oldest surviving people with his condition in Australia, passing away just 2 days short of his 49^th Birthday.

You can see why Nigel and I took comfort in Robert’s life.   When Julian was diagnosed and we were told that he probably wouldn’t survive his childhood, he reminded us that the doctor’s had been wrong about how long he would live since he was born.  We used his life to remind Julian – who will turn 13 in November - of how it is possible to beat the odds the medical world tells you are against you.  Every year was a milestone for Robert, and every time the doctors told him “You won’t” he looked them in the eye and said “I will”.

I have asked the psychiatrist to talk to Julian about Robert.  I hope that this appointment will help him ease his grief and worries.  And I hope that it will help him to feel that he can talk to his Dad and I about it as well.

My Brother Robert

When my brother Robert was born, he was diagnosed with a Congenital Heart Defect called ‘Secondary Pulmonary Hypertension’ caused by ‘Eisenmongers’.  He also had a condition called 'Polycythemia'.  Our father and his mother were told that his chances of surviving until he was 2 years of age was slim to non-existent.  Then they said 6.  Then 10.  Then 16.  Then 21.  Then they stopped telling how long he didn’t have and started focusing on how long he could have.  No one really knew, and I grew up having that constantly at the back of my mind.  

Yesterday, my brother Robert passed away.  He would have turned 49 tomorrow.

Our morning had started off like any normal Monday morning.  Nagging the kids to “Get out of bed, you have school and Kindy”, organising lunches and ironing clothes.  Shooing them out of the house to the car, making sure Julian’s wheelchair was in the back and the last minute race for a forgotten bag for Kindy.  Nigel isn’t usually with me on a school run, however he was yesterday as he had a doctor’s appointment, and I am so grateful he was.  After our final stop at Kindy, we decided to stop off at our local Supa IGA so I could pick up a couple of things for dinner and some fruit.  We met up with a friend in the car park and Nigel stayed outside to chat while I went in and picked up what I needed.  

See?  A normal start.

Nigel was waiting at the check-out for me and after a quick goodbye to our friend, we walked out to the car.  Mum rang me just as we had walked out the door; as soon as she asked me where we were and if Nigel was with me, I knew something was wrong, and despite the fact that my Nanna has not been well lately, I knew it had something to do with my big brother.

I know I cried out “No”.  I know I dropped the groceries and I know that if Nigel hadn’t caught my phone as he grabbed on to me, it would have fallen to the footpath as well.  I know my legs went out from under me, and I could feel Nigel’s arms and legs start to shake from having to hold me up.  I know that for a split second I felt grateful we live in the small community that we do when I heard a woman ask Nigel if I was okay, but that faded quickly in my grief.  And I know that for a very long time, I went numb.

We saw our doctor.  Nigel had a blood test.  Both our GP and the nurse expressed their condolences after they asked me if I was okay.  I told the nurse that I was feeling guilty and she wanted to know why.  I told her that the night before I had rung my Dad for Father’s Day and he told me Robert had called him too.  He said that Robert was having trouble losing weight, and I got irritated.  I told my Dad that it was because my brother didn’t look after himself.  He smoked and he didn’t always eat properly, even though he had made huge changes in his diet recently.

I was frustrated with my brother, and I let my Dad hear that in my voice.  Our nurse told me, in no uncertain terms, not to be silly.  She told me what Nigel had been trying to say, but hearing it from someone detached from us made it so much easier to hear.  She told me that I got irritated and frustrated because of how much I loved Robert, and how much I cared about him and his health, and that it was okay to have felt that way at that time.  I shouldn’t feel guilty, because the frustration and irritation stemmed from love.  It helped to hear that.

This morning I woke up angry with Robert.  I was angry because he had started smoking at such a young age – he was still a kid – and even though I understand his reasons for starting as a kid, as an adult he had a life with his family to look forward to.  I was angry because he didn’t look after himself better.

And I’m angry because we had drifted apart over the last few years and neither of us stood up and crossed the gap, even though we both had many opportunities to do so.  Despite this gap between us, whenever we did see each other at family gatherings, his hugs let me know how much he still loved his little sis.  His ‘Olki-Mura’.

I wish I could hear his laugh one more time.  When my big brother laughed, he did so with his entire body.  His shoulders would shake, his tummy would bounce, even his arms and his legs would jump up and down.  He had a way of laughing that made you turn and look and wish you were in on the joke.

From the day Julian was diagnosed right up until yesterday, Robert was our ‘litmus’ for Julian.  We used his achievements in life to remind Julian of how possible it is to beat the odds the medical world tells you are against you.

Thank you, Robert, for giving us hope.  We will always remember how you filled your life with as much as you could, how you challenged the limitations doctors tried to place on you.  How you would just shrug your shoulders and say ‘Ah, well, that’s just the way it is’ and keep on going with how you had decided you were going to live your life.

I love you, and I will miss you for the rest of my life.

Living with IPAH – Part One

From my point of view as a Mum:

 

One of the hardest things to accept about Idiopathic Pulmonary Arterial Hypertension was hearing that I was going to lose my son to it.  No one should have to hear that their child is being given a life sentence – especially from something that has no medical reason for happening.  And you know what?  It's not fair.  I'm sitting here at my laptop listening to Julian chatting with a mate he has over today, and it breaks my heart to think that one day, I won't be able to hear his voice anymore.  I won't see those silly faces he pulls, won't be able to wonder at how tall he's growing or feel the comforting squeeze around my waist as he gives me a hug.  One day, those bullet kisses he gives me on the cheek at night (the ones where he almost 'punches' his kiss on my cheek!) will stop.  I can't imagine a life without my first born son . . . I just know that I will lose a part of myself along with him.

 

My life seems to be full of disagreements with medical professionals, constant visits to the doctors, hospital stays for a ‘simple’ bout of gastro, trips to the chemist (I know almost all the staff by name now and definitely by face!), calls from the school . . . it goes on and on.  I’d love to be able to go a day without having to use the phrase “Jules have you had your tablets yet?” or, better yet, “Julian!  Why haven’t you had your tablets yet?!”  Right now, I’m constantly worried about the ‘flu, even though he’s had his ‘flu needle.

 

Sometimes I wonder what our lives would be like if Julian had never collapsed for that first time, if this awful condition had never become part of our everyday family life.  Would he be sporty and our afternoons be spent at sports practice and weekends at games?  Or would he still be my little bookworm that loves curling up with a great book?  I know we would be spending more time in the ‘great outdoors’ as a family, instead of Nigel taking the kids one at a time for a nice long bushwalk so our other children don’t miss out on the world.

 

Despite all this, I don’t think IPAH has to be the almost immediate life sentence (between 2 – 5 years) it once was.  I know that one day we will lose our son to IPAH but it obviously wasn’t as soon as we were told we would, and as his cardiologist – Dr. W – once told us, Julian’s life would have be about ‘quality not quantity’.  We really took that to heart (excuse the pun!) and I firmly believe that the ‘quality’ has given us the ‘quantity’ we were told we wouldn’t have.  We’ve made sure that Julian is as active as he can be, doing what he can and, being extremely sensible about it, has enabled him to lead as fulfilling a life as possible.  So many new medical treatments have become available since Julian was diagnosed, and I’m sure that there will be many more in his future.  Julian has told me that he’s just waiting for the research and technology to allow cloning of a person’s organs from their own DNA.  That way, he can have the heart/double lung transplant he may one day require and not have to worry about his body rejecting them!

 

Positive outlooks are so important, and allow our dreams to flourish where they might have otherwise perished.

 

      “Keep your face always toward the sunshine – and shadows will fall behind you.” – Walt

      Whitman