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