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.

10 Years Ago To The Day

Julian with his favourite author, John Flanagan

10 years ago to the day, Julian collapsed for the first time at my Nanna’s 80^th Birthday party.  Imagine if you will, the heart-wrenching sound of your first born (and only at the time) wailing at the top of his lungs and as you and your husband race towards the sound you know came from your boy, you see him collapsing in a heap before you can get to him.

“Oh my God, what’s happened?!”  After it’s all settled down, you’re never really sure if you actually yelled those words aloud or in your head.  Hands are fluttering uselessly as your husband scoops him up on the floor and together you bump your way through a gathering of your very large family and head towards the office where your Mum has worked for the last 9 years of your life and see her holding the door open with the phone in her hand, waiting to call the ambulance.  Questions, so many questions are asked by the operator, and after you hear “Call us back immediately if the situation worsens” you’re not even sure you were very coherent when you answered them.

Then, when you hang up you see two concerned women hovering near the door.  If you weren’t so worried and almost in tears it would be a face palm moment.  In your hurry to get to a phone, you’ve raced past two of your Aunties who are registered nurses!  They are quick to come in and check over your boy, and you can slowly see the awareness come back into his eyes.  Your nephew (who was playing next to your son when he started wailing) is in tears waiting to see if he’s okay, so you put your own worries aside to give him a cuddle, reassure him and ask if he knows what happened.  He doesn’t.  No one does.  Julian was simply on a chair at a table when he stumbled down and started crying for us.  

The ambulance comes, and the Ambulance Officers joke around with all of us while they check our 2 ½ year old over.  He looks so tiny on his Daddy’s lap with them kneeling down, putting a stethoscope to his chest and doing their best to coax a smile out of him.  His collapse has been put down to winding himself.  He’s an active boy, perhaps he hit his chest getting up to the table?  It’s possible, and heads are nodding, including ours.  After all, the kids have all been pretty rambunctious, enjoying their own little party with the baby-sitter in the other room.  The ambulance leaves without us, and we go back to enjoying the company of family and waiting until it’s time to cut the birthday cake.

Looking back, I can’t help but wonder what would have happened if we had decided to go to hospital anyway.  Would Julian have been diagnosed earlier?  I don’t believe so.  We had a long journey and a lot of – let’s say ‘disagreements’ – with medical professionals over the next 8 ½ months and it wouldn’t have made any difference if we had gone to hospital then. 

10 years ago to the day, Julian collapsed for the first time and set us on a journey we will never forget.

Stress relief for Siblings

I have 3 older brothers - you can imagine my childhood! - and each one of them has a heart condition.  My biggest big brother was born with a condition similar to Julian’s called Secondary Pulmonary Hypertension, caused by another condition called Eisenmenger Syndrome.  My middle big brother has had 2 heart attacks and has twice had surgery to have stents put in, as well as having a blood clot in the heart.  My baby big brother has a Bi-cuspid Aortic Valve, sharing the same Congenital Heart Defect (CHD) as Jimmy Barnes.  We didn’t find out until I was an adult that I have a CHD called a PDA, or Patent Ductus Arteriosus.  What a lovely family history for our children to inherit!

We grew up knowing that my BBB (biggest big brother) was not long of this Earth – or so the doctor’s had said anyway – and as his younger siblings, we were always and forever running to my folks, with the words “He’s running again!” echoing through the streets.  Who could have known that my own children would be repeating those exact same words to me?

It’s extremely stressful growing up with the terror of knowing you may lose your big brother at any given moment, on any given day.  Sometimes you wake up at night, paralysed with fear that Mum and Dad might be telling you today that he’s gone.  I know that my BBB grew up with his condition hanging over his head, but I sometimes felt that he didn’t understand that it hung over ours as well.  I was an extremely affectionate (and cheeky) little sister, and from memory, overdid the hugs when we spent time with him just so he could store them up for Heaven.  Or, that’s what I thought when I was little anyway.  I thought that if I gave him enough, God could hand them out one day at a time, they would last forever, and he would never miss out of one of my cuddles.  My little girl is exactly the same with Julian, hugging him to the point where I think he sometimes feels a little smothered by love!

Knowing how much that affected me as a child, Nigel and I try our best to make sure that Julian’s younger brothers and sister have a little ‘stress relief’, away from the worries of their big brother’s health.

So today, while Jules is staying with my parents for his own break, we took Ayan, Ella-Shae and Boey on an adventure drive to Fingal Head.  This time, my sheer terror for my children was from watching them creep closer and closer to the edge of a cliff with their Dad to peer over the edge and watch the water crashing onto the rocks.    

 

This afternoon was full of carefree smiles, and racing on the beach without feeling guilty that Julian couldn’t join them.  We went on a long walk to see the Lighthouse, watched the surfers and searched for dolphins.    

 We collected flowers and shells, drew long lines in the sand, and cleverly used baby powder to brush the sand off our feet to get into the car.

Right now, I’m watching the three of them relaxing on the couch.  They’re tired, and they are relaxed.  And, just for now, they’re not worried about anything.