"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.
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
