Just when you start to relax

Well, this is going to be a little different to the blog post I had originally planned.  I’ll just have to get to that one later! 

One thing I really hate about Julian’s condition is the complete feeling of dread I feel whenever the phone rings and the phone number listed is his school.  You know, that “Oh, shit” feeling you get?  Without realising it, you’ve pulled your shoulders back, braced yourself and taken a deep breath before you have even picked up the phone.  I can still feel the knots in my shoulders from this latest call from Julian’s high school this morning . . .

Julian’s high school is great.  The Principal is fantastic and the Year 8 Co-ordinator is unbelievable.  It’s so nice to feel safe when you wave your kids off to school, knowing that the people whose care you are leaving them in are completely trustworthy and that even the students care deeply about the well-being of others.  The teacher’s at Julian’s school are extremely switched on and genuinely enjoy the company of their students.  This brings me back to my tight shoulders.  During the staff meeting this morning, each and every one of Julian’s teachers raised their concerns of how tired he looks.  Every single day, in each and every class.  So, we received a phone call from the Year 8 Co-ordinator and we put our heads together (so to speak) to come up with a plan to make Julian’s school year a bit easier on him.

After looking over his time-table, Nigel and I have agreed to let him drop 2 subjects – Home Economics (we’re big in the kitchen in our house, with the kids always getting involved in cooking and baking, so it’s no huge loss there) and Japanese (while we’d love for him to learn a language, it’s not a necessity in his life).  This will give him an afternoon in the school library to catch up on homework, do assignments and study, one afternoon off school and a morning off, which we both agree will help him out immensely.  We’re starting it as a trial from tomorrow and we’ll see how it goes over the next few weeks.

Now, if only we can get his sleep sorted out . . .  

From a sibling's point of view

"In time of test, family is best." - Burmese Proverb

I know when I was growing up, I often thought my eldest brother got wayyyy more attention because of his heart condition, and of course, this was completely unfair to the rest of us.  Why should he get more of Mum and Dad’s time than us?  My Mum wasn’t even his Mum!  Well, that was in the mind of a young child anyway.  I love my brother, and I absolutely adored him as a kid, but there were times when I thought he was just ‘putting in on’ for the attention.  I think having grown up with an older brother with a life-threatening CHD has put me in the unique position of being able to understand how Julian’s younger brothers and sister will feel while they’re growing up. 

Brothers and sisters (both younger and older) will often feel left out if a sibling is ill.  We were lucky – if you can see it that way – that Ayan was only a baby when Julian was diagnosed so our three younger children have all ‘grown up’ knowing that their big brother has a sick heart.  I don’t doubt that it would have been much harder if he had been a ‘normal’ child and wasn’t diagnosed until they were all older.  As parents, we can become absorbed in caring for our sick kids, and our other children often don’t understand what is going on because we either don’t take the time to explain things properly, or simply don’t have that time as you’re too busy taking on the extra duties that come with having an ill child.

Ayan once drew a picture of what could happen to Julian if he exerts himself too much (he had told a teacher he saw Julian running and Julian got the shits with him over it).  It was of Julian running, then an ambulance, and then Julian – dead.  It made me stop and think about the worries that they go through every day, and that their worries may just be worse than our because we – to an extent – understand the medical side of things, what is being done to care for Julian to make sure this doesn’t happen.  All they really understand (as I did as a child) was that one day they might not have a big brother any more.  With this understanding comes the need to ‘push’ their relationship with him, sometimes forcing their attentions on him when he just wants time to himself, and at other times, tattling every chance they get.  It’s their way of getting all their love in, and protecting him (and themselves from losing him) all at the same time. 

Even after Julian’s health stabilised after his surgery in August 2011, they all still had trouble dealing with the emotional issues that came along with it.  Nigel and I were able to cope differently; we were there when he had his surgery and I was in the hospital with Julian for the whole time he was there.  We spoke to doctors, nurses and other parents to help us through the worry.  Yet, for his siblings, all they really understood was that Julian had gotten sick enough that the doctors wanted to operate on his heart to stop him dying.  They didn’t see him for a week, and when he came home he could barely walk up the stairs, and for another two weeks, had no energy to play with him.  You could almost see the wheels turning in their little heads.  I thought he was going to be better when he came home?  After he had recovered, they took on what they thought was their job keeping him safe.  “Mum!  Julian’s puffed!” became a common shout in our house for months afterwards.

I don’t think that we were remiss in our parenting during this time, but our thoughts were far more focused on Julian and his surgery than they were on what might be going through their heads as well.  We had sat them down before his surgery, and explained as much as we thought they could understand, but we didn’t really think about what would happen when he came home.  So, here are a few things we came up with once we realised the kinds of worries they were also feeling:

*  Keep siblings informed of their brother/sister’s medical condition – and be honest!  They need as much information as you do.

*  Make sure you tell them – and that they understand – that it’s not their fault their brother/sister got sick.  Trust me, they do go through stages when they blame themselves.  

*  If their brother/sister is in hospital for any length of time, take them to visit.  It will strengthen their relationship, and lets both your ill child and your healthy children know that each cares for the other.

*  Let them know that it’s okay to feel angry, sad, scared, worried, because you feel that way too.  It lets them know that you understand how they feel, and that they can talk to you about anything.

*  Answer their questions.  Why does Julian have to take tablets?  Why does Julian have to see the doctors a lot?  How come Julian can’t run like we do?  Be honest in your answers, and don’t ‘baby talk’ them.

*  Find alternatives for family outings.  Obviously, Julian couldn’t handle scrambling over rocks and steep climbs, but he can do an easy bushwalk if we take it slow (luckily, Nigel photographs mushrooms so we always take a bushwalk slowly), and walks along the beach are another thing we can enjoy as a family. 

*  One on one time!  I can’t stress how important this is.  So much of your time can be taken up with your ill child, and siblings need to be reminded that they are just as important to you and that you love them just as much as always.  If there is something they want to do that they know their brother/sister can’t do, take them by themselves.  They shouldn’t have to miss out on things they enjoy because their brother/sister can’t do it – and make a point of reminding your ill child of this also.

*  If they are attending school, kindy or daycare, make sure you let their teacher’s know what is going on, especially if their brother/sister is in hospital or sicker than usual.  It’s just as important of informing your ill child’s teacher.

*  If you need someone to look after your other children because of hospital appointments or emergencies, make sure you ask someone they all know well.

*  Don’t talk down their concerns.  Let them tell you how they feel, and more importantly, listen properly not with half your attention elsewhere.

*  Make sure you don’t compare your ‘normal’ children to your sick child when they are sick themselves.  ‘Come on, if Julian doesn’t cry when he has a needle, then neither should you.’

*  Be just as encouraging and enthusiastic about their achievements as you would your sick child.  I’m looking forward to dancing with Ayan and Boey at their Grade 7 graduation and watching Nigel dance with Ella-Shae just as much as I looked forward to dancing with Julian at his. 

One of the most important things you need to realise as a parent is that you will forget to do each and every one of these points.  Writing them out just made me realise how often I forget them myself.  Don’t beat yourself up over it, you’re only human and sometimes, life can just simply get too hectic for you to remember everything for everyone all at once.

“The only rock I know that stays steady, the only institution I know that works is the family.” - Lee Iacocca

Remaining a normal parent

When Julian was diagnosed, Nigel and I sat down together once all the turmoil had settled down a bit to discuss whether or not this huge change to our lives would change how we parented Julian, his then baby brother Ayan and any potential siblings he may have in the future.  We both agreed that despite the restrictions he was now under (we were told by his cardiologist “Let him watch TV, as much as he wants”), we wanted him to live as normal a life as possible, which meant that we needed to remain ‘normal’ parents.

This isn’t as easy as it sounds.  Apart from the usual ‘well-meaning advice’ every new (or experienced) parent receives from family, friends and even complete strangers, we now had to contend with doctors, nurses, pharmacists, pathology nurses and ambulance officers.  Everyone had their own ideas on how we should behave as parents, and outside of our family and close friends, no one really wanted to let us work it out on our own.

We were learning new medical terminology, learning about medications, we had new routines to work out and on top of all that, we wanted to do all this and still remain, wait for it, here’s that word again, ‘normal’. 

It’s hard to be normal when you’re busy panicking because someone is late bringing Julian home and you’ve not long had it rammed down your throat that his medications have to be taken at a certain time, and that certain time had passed half an hour ago.

It’s hard to be normal when your old routine gets thrown out the window and is now worked around doctor’s appointments, blood tests and making sure you don’t run out of medication.

It’s hard to be normal when, day by day, this new reality is setting in.  Life as we knew it had been put on hold, and the ropes that we had used to tie everything together to get through those first few months were starting to fray.  And it’s so hard to be normal when it’s just so damn unfair.

As this new reality set in, we found ourselves becoming reconciled to our new ‘normal’ parenting behaviour.  Which was actually still our old parenting behaviour, just with a good dose of guilt tossed in for fun.  We had decided that there would be no coddling in our house.  He was still our boy, and we were going to keep raising him the way we started.  ‘Please’ and ‘Thank you’ were still – and would always be – a must in our house.  Put the lid down on the toilet once you’re finished.  Make your bed (or do your best when you’re little).  Keep your room tidy, and don’t make too much of a mess in our living areas.  Sit still, and eat nicely at the dinner table.  If you don’t eat it now, you’ll get it for your next meal.    

Rules.  Rules.  Rules.  We didn’t change them.  They still remain the same to this day, and I believe that our family is stronger because we stayed ‘normal’ parents.  So many people told us that we would have to change our lifestyle because of this bastard-arse condition.  But why should it?  Everything else had to change, but why did we have to change our parenting along with it?

We want to give Julian everything we possibly can in life – and we want to do the same for his younger siblings.  Does this mean Julian gets more leeway in his home life?  Nope.  Not a chance.  He has chores to do that are age appropriate, and aren’t affected by his health (he doesn’t mow the lawn, but he can still vacuum the car!).  If he’s sick, then the rest take up the slack – and he does the same in return when they’re ill. 

One of the things we considered when deciding to keep our parenting methods ‘same old, same old’ was that if we eased up too much on discipline and changed the rules for behaviour, when he was old enough to understand what his condition meant, we didn’t want there to be any illusion or inconsistency in what was actual and perceived when it came to the seriousness of his condition.  This meant we had to be careful because he may assume that things were far worse than we had explained to him.  We simply wanted to make sure he was completely aware of our love for him & that he wouldn’t be treated any differently.  His condition is not an excuse for misbehaviour & lack of discipline.

Does this make sense?  If our roles in our parent-child relationship remained the same, with us remaining loving, firm, positive and encouraging, then it would be less difficult for us in the other aspects of our lives.  We were also trying to prevent sibling rivalry when the boys got older.  Same rules for all children meant that there was no question of Ayan wanting the same rules and treatment as Julian – they were already the same.

Here is a perfect example of what we were trying to avoid.  During this period of adjustment in our lives, we met a great many parents of other children with heart problems and there is one family in particular that stands out in our minds.  A perfect example of how we did not want Julian to grow up.  The parents had obviously chosen to indulge the every wish of this particular child while they were growing up and the result was a petulant, demanding and extremely rude pre-teen child that had absolutely no respect for their parents, nor anyone else for that matter.  In fact, it was even the case that this child did something extremely disrespectful during our short encounter with the family, and their sibling ended up getting the blame for it – even though said sibling was on the other side of the room at the time!

Julian’s diagnosis took away the control we had over our lives for a little while, but we found that getting into that routine, getting that structure back, helped us to get every day things done and we didn’t have as much to worry about.  Keeping a sense of normality in our household allowed Julian to stay a child as much as he could, and by keeping the focus on ‘normal’ and not on his condition, we stayed strong as a family.  We cooked, we cleaned, we made beds and we had fun, and remembered to love each other a little bit more each day. 

Maybe the world wasn’t going to end after all.