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.