13 Years on

13 years - what a milestone!
 What a life time really!
What experiences - good and bad.
What a roller coaster and marathon all in one.

It is mindblowing really to think back on where I as a person, and we as a family were at 13 years ago.

So much has changed, not been as we'd expected, planned, hoped. So much growth has happened - not necessarily in ways I'd have thought of but have paid off in so many directions. So many pre-conceived ideas have been rudely, abruptly and often slowly, painfully and thoughtfully thrown out the window.

Why 13 years?
W, my eldest turned 13 today.
13, the start of the teens is a big milestone in anyone's life but it's also a pause for the parents and a moment of "Crap! Have we really been at this lark that long??!"

13 years ago today both he and I were hanging on to life - both in question.
I improved and they relaxed.
But the scramble has been on-going with W. Doctors, paeds, dietitians, tests, OTs, physios, SLTs, meds, apnoea monitors, food diaries, weigh-ins, missed milestones, the hailstorm of diagnosis after diagnosis.
Things have slowed over the years with W if that's any reassurance to others at the brutal starting point of this ultra marathon. Out of the 35+ appointments the boys have had since the middle of Jan this year only a very small handful have been related to W.
I do have to make an appointment with Special Ed to discuss W's secondary schooling but I refuse to do that in his birthday week. I want the momentary oasis.

It annoyed the hell out of me, as a realistically and rightfully worried prem mum, to be constantly told of 6ft prems and not to worry they all grow eventually.
For those reading this who are NOT prem parents - DO NOT tell people about the boy down the road who did this. It will drive crazy rather than reassure because it IS the exception not the rule.
Having said that - I'm in danger of actually having the proverbial 6ft preemie!

But not without years of blood, sweat, toil, research, hassling doctors, high cal supplements and tears.
My 3lb 14 oz or 1.795kg baby who was only 34 cm long is now around 50kg and 170.5cm tall and increasing every day by the looks of him.
The contrast between the 2 year old who weighed 10kg and ran crying from food to W now who is always on the scrounge for food is incredible.
I guess if you play chicken long enough someone has to blink so if you stay firm it's not going to be you.

I never thought that parenting was going to be THIS kind of endurance race. I knew it'd be hard, try your patience, you'd be tired, frustrated at times, worried at times but not quite like it's been for us.

I wanted to be a mother - not a doctor, nurse, therapist, teacher.
I did not want to get to the point where we were today when I took T in to the doctor and said I thought he had a tube infection, she took one look and agreed and wrote the script for antibiotics. Didn't even need to swab. Even T knows enough these days - he specifically asked for ones that didn't need an empty tummy and could go down his tube.

But you know what?
I've gained so much too - the appreciation for every tiny milestone - sure not every mother celebrates the fact their kid can breathe on their own but knowing how a sat monitor works has been very useful!
Every mother celebrates their child pulling to a stand, crawling, sitting walking - but not everyone's watched every little component of that skill battled for with physios and home therapy.
Every mother would be very proud of their child getting a distinction and 81 % in their first ever piano exam - but not everyone also watched the same child aged 4 struggle in OT sessions to make one of his hands work the way they wanted.

I've gained incredible research skills and interpersonal communication skills, between multiple disciplines - and taught a few experts a hing or two - and even to treat me as a dumb mum at their peril!
A few medical specialists even treat me as an equal partner in the team - as I am.

Every mother will stand and fight for their kids - but the fights we have fought have often been far-reaching, significant and important.

I am more battle weary than I ever thought possible, more tired now despite not having a newborn, and some times just jaded from the constant on-slaught.

But I am a stronger person, a changed and different person, often learnt to try and find the quiet, the good moments, and what really counts - trying not to sweat the small stuff.
I have also learnt to see and appreciate the incredible strength, resilience, determination and absolute inner beauty of my boys. There can be sheer triumph in tiny achievements.

Today when we celebrated W's birthday with a fast food dinner between the older two's swimming and W's soccer practice - T managed to eat almost an entire children's meal. Yes, he's 6 and yes, I then hooked him up to his night tube feed in the carpark but he's NEVER done that before.
There can be sheer triumph in tiny achievements!

And so to W - from my tiny, might not make it 24 hours, first born, struggling through so many hoops with pride and dignity - I'm sure there are many more hoops to come, no I might not be able to be there, wearing the knees out of my jeans as I teach you to crawl, but I will be there with you to the best of my ability - as I know you will to yours. You have risen to every challenge, struggled through and triumphed as best you possibly can.
And we will cheer you on!
To an amazing 13 years of growth - many the next 13 be just as amazing - but easier!