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.