12 Years On - what the kids have taught me!

Today is the day 12 years ago that I started this magical, amazing, exhausting, invigorating and all over mind-blowing adventure we call parenting.

I got catapulted into in with an absolute shattering of what my dreams and ideals of what my first child’s birth day would be like.

Not a gentle nudge, “Honey it’s time”, not quiet cuddles and a getting to know you time as a family with a newborn.

No – not for me – it was a full blown, bells and whistles high tech birth, emergency calls, emergency caesarean, baby whisked away as soon as it could be.

Such a high tech and modern birth P only made it thanks to someone in his choir having a cell phone in 1998, thanks to the unknown person who volunteered to be bumped off a plane so he could take their seat and fly back – W’s birth notice includes thanks to the airline!


But over the past 12 years I have learnt so much, grown and developed skills I’m sure I’d never have otherwise and learnt to look at life and appreciate life from a whole different angle.


I have learnt a whole new language and alphabetic acronyms – and how to exist in a whole parallel world of first the NICU and all the medical bits and then the world of children with special needs, therapists and so on.


I have developed my mathematical skills well beyond any of mine (or my teachers’ expectations!) going from working out timing of 4 hourly feeds on my fingers to now calculating mg per kg medication dosages, converting it to how many mls of the particular strength and when checking my figures with a GP discovering the only error was HIS.


I have learnt patience to a whole new level – from waiting 4 months to see W’s first smile, to waiting 4 years to finally hear T belly laugh after finally being free from reflux pain.


I have learnt persistence – from wearing out a pair of jeans teaching W how to co-ordinate himself sufficiently to learn to crawl to teaching N not to stand on and jump from the kitchen bench – timeout up to 20 times a day for well over a month!


I have learnt the value of time – from the lifetime that seems to pass in seconds as W’s apnoea monitor alarms again and you gently re-stimulate his breathing hoping and praying that you won’t have to put your CPR theory to a practical test to the trying to carve out time for each kid in a busy day filled with appointments, housework, therapies which need to be done and supposedly also doing paid work.


I have learnt comprehensive organisational skills – from organising and keeping up to date medical files on all the kids, keeping all scripts and repeats up to date, to making sure we don’t run out of coffee!


I have learnt how to write concise medical summaries for a doctor or specialist that will get across the journey so far, in a format they can absorb quickly but won’t put anyone’s back up.

I have also learnt that doctors, far from being gods, can make mistakes like anyone else and need to be pulled up on that occasionally – or fired from my child’s team of which I am the leader.


I have learnt to admire the face of courage in the many forms my children have shown me – from the on-going, everyday pain caused by severe reflux suffered relatively uncomplainingly by all of them, to simply continuing every day knowing they will be confronted with tasks they struggle with but doing it anyway – be it understanding a demanding and exhausting world for W, struggling to focus and concentrate on less than attention grabbing tasks for N, to developing language skills for T. They have persisted, courageously, to achieve what others may do without thinking.


While the children have struggled greatly in many areas it is a privilege to watch them change, develop and fight to grow. I will never take the smallest achievement for granted again – be it W finally figuring out how to co-ordinate the ‘suck, swallow, breathe’ routine for feeding aged around 10 days old, those first staggery steps from both W and N when N was so far behind at 10 months old that he was assessed at a 3 month level, to T figuring out how to sign for sweets and immediately doing it with two fingers to indicate he wanted more than one sweet!


I won’t complain about children moaning about being hungry – the words “Mummy, I’m hungry, I need food” from a 4 ½ year old T were magic indeed.

The joy of the family seated round the table all happily eating and completing their meals without dramas is not yet something I’ve been blessed with but I still plan for that in our future.


These are just some of the many skills and experiences which my children have given me on this journey of motherhood.

I can’t say I haven’t shed tears – and not just ones of pride.

I can’t say I haven’t ever lost my patience, been extremely frustrated and angry – or wondered why me and why all the kids.

I can’t say they have achieved all I’ve set out for them and I will continue to steer, direct, guide and ensure they get whatever services and help they need to get them to achieve to the absolute best of their abilities for as long as I can.

There are definitely times where the “Welcome To Holland” outlook is much more a “Welcome To Beirut” outlook.

But I have also learnt to treasure those rare, quiet, peaceful oases where no one is in crisis mode, we are not in the build up to some fight for therapies or trying to push a doctor along, and in fact things are ticking over and everyone is healthy.


These are just a few of the things my children have taught me over the past 12 years.

When is the light at the end of the tunnel supposed to appear?

Yup, feels like a never-ending tunnel of gloom right now.

I posted on N and his eating recently and how we aren't getting anywhere and he desperately needs the nutrition.
We got the letter from the paed yesterday and for the first time it has it in print - food aversion and Nicholas.
There is was, black and white.

I know that's what we're fighting against, I've known it really for some time. But it's different when it's stated in print by a professional. When it's not just spoken of as a possibility but as a firm diagnosis.
It makes it real.
It blows away the forlorn thought whispering in the back of your head that maybe, really this is just a phase, if I do this or that he'll just snap out of it.
Nope - it's the real deal, the big black monster pushing you against the wall and the war is on - who is going to win the kid - you or the monster?

It means it's going to be a long battle, a hard battle - and that this feeding nightmare which started nearly 12 years ago when W was first learning to feed and then reflux derailed everything - is not going to end any time soon. It is and will stretch out for years ahead of us.

Why and how did we get into this mess - again? What could I have done or should have done differently? Was the surgery a bad idea since the eating mess was kicked off post op?

I don't know.

I don't believe the surgery was a bad idea. I suspect if he'd continued refluxing and vomiting we'd have wound up in this precise spot anyway. So that's one never-ending question answered.

I think the one thing which I could have done which might have changed the outcome was the lack of medical backup post op as the eating difficulties emerged.
The surgeon saw him about 4 times post op because of the eating issue but there wasn't much he could do except saying go back to the GP. GP was a locum and leaving shortly and really simply didn't want to know.
I was left in the cold with a kid who was starving himself.
If I could jump back in time I'd do the surgery with him under a paed - someone to take an overview. The only person who had the overview was me and no one was listening.

N WAS eating well before his surgery - but only had about a 3 year history of eating well and considering he was 6 1/2 that not much of his life span.

So under pressure and in pain he reverted to former eating patterns. They worked for him before so it made sense for him. Self preservation instinct and all that.
But now we have a nearly 3 year history of further eating problems.
At nearly 9 1/2 he has only 3 years experience of eating suitable amounts for good health and growth.

We have to re-train all that experience and change all those habits and thoughts, as well as get his body used to actually having a larger amount of food in his tummy without negative responses like feeling sick or hurting.

And in the meantime we have a nearly 9 1/2 year old who is formula dependant - and with a food aversion.

I don't expect the kids to be raging foodies - although that'd be lovely - but I do need them to be able to be trusted to eat enough to thrive. What's it going to be like as a teenager or early univ student? What if he winds up living away from home? Who's going to make him eat, watch the patterns, make sure he's not slipping backwards?
He has to get this sorted and new behaviours entrenched before then.
I'd like meals to not be a succession of reminders to eat and failed, rejected meals.

Actually I'd love it if just for once both N and T actually finished a meal - the same meal at the same sitting! I've never had that - ever.

And the brutal reality of what we're facing comes close on the heels of doing paperwork for T. Once again FTT holds top billing for him.
I had so hoped, wished, dreamed that he'd have lost that by now.
When I objected on the grounds that FTT is weight, growth or both below either the 3rd or 5th centile - AND HE'S NOT!! - the doctor pointed out that without his tube he would be so technically he still is FTT.

I'm sure parenting wasn't meant to be this hard. There's supposed to be a warm rosy glow around family meals - healthy food, happy talk and togetherness. Families bonding, coming together, celebrating. From the happy baby glugging away at bottle or breast, to the food play of beginning solids - it's all about growth, nurturing and love. Successful parenting.

I ponder this as I mix formula for my 9 year old, wash syringes and attach and detach tubing from a plastic tube implanted in my 5 year old's stomach.

And so the food war rages onwards, getting deeper into the trenches and mud.