Day 4 with an Event Recorder

Why is it that up until the point you actually have tests done, the problem that was presenting itself would happen on a daily basis suddenly slows down and you’re lucky to have just one present itself in a week???  Grrrr.

In between Julian’s last two Pulmonary Hypertension Clinics he started to get almost daily palpitations, and they were pretty random in occurrence.  Under exertion, at rest, it didn’t really matter what he was doing, all of a sudden you could see his t-shirt moving in time with his rapidly beating heart and he would go pale and blue all at the same time.

It was enough to concern his specialists and Dr. W referred Julian to have a 24 hour Halter Monitor and an Event Recorder for a week. He has red splotches all over his chest and on his side from the stickers they use (it’s getting harder and harder to find a ‘clear’ spot on his chest!).  Needless to say, we’re slathering them with Medi-Quatro several times a day to get them to heal.  I know he needs to have this done, but it’s so hard to watch him desperately try not to rip them off when they start to itch.  

So far, he’s managed to catch two.  One while he was playing soccer with his younger brother and one while we were lazing on the couch last night, catching up on all the missed ‘Person of Interest’ – we’ve got about 14 more episodes to watch now!

Dr. W granted my rather cheeky request to attempt to bring an episode on – in fact, the grin on his face (while the other 8 people in the room looked at me in mild horror) when he said “Do you think you can?  Knock yourself out” showed me how well he has come to know me over the past nine years!  I haven’t tried it yet; I have until Monday.  Julian’s already started peeking around corners and looking over his shoulder, waiting for when I do . . .  if I do.  I probably won’t.  Shhhh, don’t tell him that though.

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.