Monday, 4 February 2013

My perfect kids

My perfect kids
4 February 2013

What do you mean my kids aren't perfect???

Don't be ridiculous!  Or course they are!  Every parent thinks that their children are marvellous.  Geniuses.  Gorgeous.  Clever.  Cute.  Completely and utterly perfect in every single way.

It then comes as a huge shock and an unpleasant surprise when someone tells you that in fact, they’re not.  I mean, I’m realistic after all.  I understand that they’re not going to conquer the world.  Be captains of industry.  Not going to be inventors and discover new cures for terrible illnesses.  Not going to be rulers of the world.  Not necessarily doctors, judges, nor architects either.  My expectations are fairly realistic, yet I firmly believe that if they put their minds to it, they can be anything they choose to be.

The perfection thing though is a given.  They’re my offspring after all.  But then, slowly but surely, the odd little niggle raises its ugly head.

Ag age five, we discovered that Luke is colour blind.  It’s not a biggie actually and doesn’t hamper him at all.  Quite obviously he can lead a perfectly normal life.  And the only noticeable impact it could possibly have, is that certain career paths, have been crossed off the list.  He can’t be a pilot, nor a hair dresser either.  Can you just imagine the way he would dye or highlight people’s hair!  Fruit picking has also been scrapped as a possible career choice.  He would make a terrible strawberry picker - picking green strawberries and not the red ones.  A career in electronics is out, due to the numerous colours of the electrical wires.  Mixing paint is also a no-no, so a career in Builder’s Warehouse’s paint department is off the cards too.  Ironically in some careers it’s actually beneficial.  The army prefers colour blind soldiers as snipers and spotters.  And they make brilliant entomologists too.  Luke can spot a gecko on a shrub from many paces away.  So as you can see, being colour blind is hardly debilitating.  In fact these days they don’t even call it colour blind anymore.  It is simply not politically correct enough.  The medical and “correct” term is that he is red/green deficient.  He sees colours perfectly fine and his world is not black and white.  He has the most common form of the deficiency and sadly I get to take the blame for this one.  It is genetic.  My father (the brilliant artist – go figure) was also colour blind.  He passed the gene on to my sister and I.  And this very gene lies dormant in us and doesn’t affect us at all, but in turn we pass it on to our boys.  Cole has luckily managed to dodge this particular bullet.  For Luke, shadings of the same colour confuse him and occasionally I’ll give him an instruction like “please go and fetch the grey blanket” and he’ll come back and tell me that he can’t find it.  When I go and find it and point it out to him, he’ll say, “but it’s brown”.  Odd!  So every year, as a courtesy whilst still in Primary School, I warned his class teacher.  So that on the odd occasion when he does a very fetching drawing of a green dog, she understands that it is not intentional.

Amber had the cutest little lisp, which we sadly had to fix.  It was so cute and I absolutely loved it.  But nowadays it is frowned up and is seen to hamper kids once they reach school going age.  So a few months of speech therapy sorted that one out.  At birth, her lungs were also under developed and so a very stressful time followed.  But luckily after a few days, first in ICU and then in High Care all was good.  And barring a few precautions in the first few weeks, she did fine.  In fact, if her voice is anything to go by, her lungs seem to work just fine!  And when she’s in talking mode, it appears as if she’s got circular breathing waxed too.  Barely taking a breath between sentences.  When Amber’s got you in the grips of one of her bouts of verbal diarrhoea, you’ve had it.  So irrespective of their dodgy start, her lungs are most certainly all okay now.

With Cole, the penny dropped from quite a young age that he was abnormally easily distracted.  And after a few months at Playschool, his teachers confirmed this.  They had also noticed it.  We had him assessed at just four years of age and the term ADD was first mentioned.  I was devastated!  Still we all coped fine and he was still so very young.  After two years at Chatterbox, Cole moved on to Happy Days where he would be spending another two years.  Within the first few weeks of his first year, his teacher once again noticed the concentration thing, and thus we had Cole assessed again.  Once more the ADD word was used, but he was still so little.  We worked out a merit system between home and school, which encouraged him to be a bit more focused, especially during his “school” day.  And by the time he got to his second year at Happy Days, another assessment was on the cards again.  The ADD word was used again and we were advised that we might have to consider medication by the time he got to big school.  In the interim he did some Occupational Therapy, entailing A LOT of homework for him and us.  But we did it.  By the time we got to big school, I was pretty much prepared for medicinal intervention.  And predictably, within a very short while, we got called in by his teacher.  Assessments followed.  And these were in turn followed by visits to the Paediatrician.  All in all – it was a very lengthy, tedious and drawn-out exercise.  And it cost a lot of money.  But we haven’t looked back.  Ritalin has saved our lives and has given Cole the tools and confidence to sail through school.

With regards to Luke, I was quite prepared for orthodontists and the verdict that his teeth weren’t perfect.  It was nothing personal.  But then, when he was about eleven, we noticed that the one side of his chest looked exceptionally flat.  Slightly strange.  I took him to our GP, who said it was difficult to assess what the problem could be.  That we should just hang tight a bit and see how it develops further, as it was causing no discomfort.  A bit later down the line, it was still not quite “normal” and after a visit to our GP again for flu or something, I mentioned the chest thing again.  This time he referred us to an Orthopaedic surgeon.  X-rays followed and still no clear explanation was to be had.  The lack of a pectoral muscle or an under developed one seemed the cause.  We were to stay put and leave all alone.  Luke needed to develop, grow a bit, hopefully expand (he is ridiculously skinny) and should discomfort occur, come back again.  This has all taken a few years to play out.  Luke’s chest has been bothering him more and more.  Especially now, as he is starting to develop his more adult body.  The right side of his chest is puffing out with muscle and the left side is completely and utterly flat.  Also, Luke has been complaining of pain and discomfort.  So once again, we traipsed back to the Ortho, who by now is showing a bit more concern.  In fact, he reckons he might even know what it is – Poland Syndrome  But just to be on the safe side, he calls for a CT scan.  And thus a week later Poland Syndrome is confirmed.  Now just so we’re clear, the word “syndrome” fills me with fear and dread.  Hardly the kind of thing you want to hear about your kid.  The long and short of it though, is that Luke doesn’t have much if any pectoral muscle on the left hand side of his chest.  It will never develop.  His ribs on the left hand side are also painful, a side effect from the Poland Syndrome.  Furthermore, his sternum is not properly formed and is slightly asymmetrical.  Great!!!  Luke is predictably shattered.  He’s at a very vulnerable age, where the last thing you want to do is look different to everyone else.  In order to bulk up (doctor’s orders, because his knees are also shot – but that’s an entirely different drama), he’s been exercising.  And as he’s increasing in muscle volume on the right hand side, the absence of muscle on the left hand side is becoming more noticeable.  The good news, is that this is not life threatening.  And though on the left hand side of his chest, his heart seems protected enough.  At this point in time, surgery is not really an option, as he would basically require a breast implant from what I can understand.  And if that’s the route we have to go, it would be better to wait until he’s fully developed.

I’m hurting for my boy, because he’s hurting and saddened by it.  I have however told him, that we will do everything within our power to get to the bottom of it and find out what we can do to help him.  And in that manner, because of his discomfort, we’ve been referred to a Cardio Thoracic surgeon/specialist.  Hopefully he will be able to shed more light on the matter for us.  Added to that, a friend’s husband suffered terribly as a child from a chest problem too.  And though different to Luke’s problem, it affected him as a teenager, a young adult and even as an older adult. So much so, that at the ripe age of 41, he flew to Germany and had a new minimally invasive surgery to correct his issue.  He has not looked back.  He has taken a keen interest in Luke’s wellbeing and has made contact with his surgeon in Belgium, who is keen to advise us on Luke.  It all seems slightly surreal and very high drama to me.  In the interim, I have told Luke that he must go with his emotions and feel what he is feeling.  He is quite obviously allowed to be sad, angry, frightened and upset.  I have also told him, that he will eventually get to a place of acceptance and realise that there is much to be grateful for.  It is not life threatening.  He can still do all of his sport – his beloved hockey included.  He will not be losing life or limb over this.  It is not a blatantly obvious deformity.  If is he is feeling self-conscious when it comes to swimming and hanging out with his buds at the beach or around the pool, he can wear a vest type shirt.  Furthermore, he is most aware of this.  Others not.  Unless you are looking for it, particularly now, while he is still so young, it is barely noticeable.

So, for now, we’re hanging tight.  Until Wednesday and the next specialist that is.  Who knows what will happen.  Hopefully we have equipped Luke to cope and deal with this.  In any rate at the moment he is very distracted by his knees too.  Oi vey!  And that is a whole different set of doctors again too.

Irrespective of all the niggles and seeming outward imperfections, my kids are utterly perfect in my eyes.  Except when they’re naughty, cheeky or back chat of course. 

And just for a bit of perspective, at a glance, all of my kids issues are relatively easily fixable.  Not life threatening.  With the help of medical intervention and in Luke’s case perhaps not (he can stay the way he is if he so chooses), all will be well.

However, someone close to me, whom I shall not mention for fear of incriminating the innocent, had a far worse fate.  His mother was a diagnosed Bipolar Schizophrenic Diabetic Epileptic.  I kid you not!!!  She was a particularly hard women to love.  Extremely irrational, moody and all round difficult to deal with.  It was not uncommon for her to decide that “they’re spying on her through her TV” and to take to her TV with an axe.  Once again, I kid you not!  He said that he had the best relationship with his mom, once she got Alzheimers.  She would forget what she was arguing with him about in the middle of the sentence.  And I don’t think she desecrated her TV set again either.  Problems like those are so much more difficult to fix.  And I have the deepest empathy for people who suffer like that.  And their families around them too.

And thus I’m super grateful for all three of my imperfect yet perfect kids.  Each and every one.





  1. Thanks for sharing Helene. Its tough when you see your kids struggling- but they got the best support team ever! And they are perfect, after all! I had forgotten Fafan was colour blind - can't quite get my head around that when I admire his stuning paintings on my walls!

  2. I hope and pray that Luke will be okay in his heart with it all. He's stil a handsome boy, and obviously very clever! Prefectly imperfect!

  3. We love them... warts and all.
    But it is hard to love yourself as a teenager.
    All perfect to me!