Where exactly has this year gone?
Feels like yesterday we were getting ready for Jennifer’s operations, or getting ready to take the kids back home to Perth….
If I could sum up this year in one word it’d be progress.
Socially, cognitively, some what motorical, her language and last but not least her weight gain.
Jennifer will end this year on the right side 11kgs. On average she’s putting on about 0.5kg a month.
Which is plenty for a girl who doesn’t have the muscular structure of a healthy child the same age.
Jennifer will never be fat, get used to it.
She now reaches out socially, and if you’re an adult in the same room and you don’t say hello she’ll tell you about it!
She can play the drums, which in itself is awesome!
In 2 weeks Jennifer turns 3, which in itself is quite an achievement when thinking of the baby who looked so awful when she left Great Ormond Street.
This year, like every other year has been a rollercoaster.
The lows of seeing your child as sick as you’ve ever seen her before……
The highs of being able to take our multihandicapped child to the other side of the world without so much as a hiccup.
The delight on the face of your child when she gets the important role of picking the colour on the new car…..
That feeling of pride when you see your child is making sure that her severely brain damaged sister is geting just the same amount of stickers as she does…
The frustration of hearing the council say it’ll take 1 year (most probably 2, this is a council after all) before they can even look at your building application, evaluating that, withdrawing the application, drawing up new plans only to hear the architect say they’ve made a big mistake, you’ll still have to send in an exemption application.(https://ryanakajoey.com/2014/05/12/the-extension-part-1/) Losing months on a process that is more frustrating than you think!
Arguing over damage to your house, and being as polite and understanding as possible.
Knowing that being polite doesn’t always help, sometimes the only message that people undertsand is one that is handed out with numerous profranitites and waving arms. …
Unfortunately some people in this world are more intent on ensuring that they don’t have problems than they are on helping others with problems.
While most will never take a trip to the house of mirrors, our experience has forced us to.
And with every negative experience comes a positive lesson, at least if you choose it to be.
The thing about life is you never know what lies ahead, and sometimes what happens tomorrow can devastate you in a way you never thought possible.
That we still live in a world that uses brutality as measure of power is incomprehensible, we are surely the worst species in the universe.
Sometimes tradegy cannot be reasonably explained. A random act that is so unfair for so many reasons….
When it happens we feel empty, yet cluttered with the thoughts of a thousand men at once.
We don’t want to believe that the unthinkable has just happened.
We feel all the emotions at once, and they’re stronger than ever before.
Our brains aren’t used to coping with this sudden rush of emotions, and they can’t, they start to overload.
We loose sense of what’s happening around us until we almost can’t have a simple conversation. …
And then it happens….. we crash….
When we crash we’ve finally understood, this is really happening!
For a long time we’re not ourselves, we struggle to comprehend this new everyday life. Our brain is slowly rebooting, forgetting what used to be important and trying download the “I’m gonna be a better bloke from now on” version…
In a sense we’re all just individual grains of sand on an endless beach, we forget we’re encompassed by many other grains. Everyday we blow by and wash over those other grains like they don’t exist. We’re gathered only by random events, some of them tragic.
Only then do we decide to change, only then do we realise we should’ve been changing all the time!
Life isn’t fair sometimes, but it’s not fair for so many others too.
Some forget, because the pain wears off, the emotion subsides and they end up back on that beach alongside everyone else.
We have a daughter who’s most vital organ a human needs is in absolut chaos…
Yet she gets by, and so do we….
We get by with the help of the people who never forgot, the ones who never changed back!