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.
