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.
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!
ReplyDeleteI 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!
ReplyDeleteWe love them... warts and all.
ReplyDeleteBut it is hard to love yourself as a teenager.
All perfect to me!