How I have felt the last little while about it all...

Our son, Oscar, has a partial duplication on the long arm of chromosome four. This rare genetic disorder has resulted in global developmental delays, in particular, a profound speech disability. He also has mild cerebral palsy. I hate starting with the medical stuff as it seems to me to reduce him to a list of ailments or disabilities, rather than encapsulating the person he is. And that, for us, in a nutshell, is the constant world of living with a rare genetic disorder.

You see Oscar is a happy, funny and highly empathetic boy who brings joy to the lives of all who know him. He absolutely loves playing handball, is a pretty good cricket bowler, doesn’t like soccer very much, is obsessed with swimming, or more accurately, being allowed to have a swim at his Nana and Grandpa’s house and is currently mad for anything to do with Star Wars. Anything. At all.

He is eight now. He has two brothers – Felix who is six and Jasper who is six months. For me, having had two more children, I now realise that the roller coaster of emotion and energy that is parenthood, is a hundredfold when you throw disability into the mix.

Beyond normal parental concerns is the role of advocate, of fighter, of defender – and often for an entire cohort of families pushed to the fringe of society through no other reason than having a child not sitting pretty in the middle of the bell curve of development. A dear friend – Diane Petrie - calls it living grief and she is quite right.

From the early years where our anxiety was so milestone focused – will he walk, talk, clap hands, sit etc. – to our current situation of just this year moving to a mainstream classroom setting (see our dream for Oscar) and the myriad emotions that pulls from us, I spend a lot of time mulling over what is this world I now inhabit, what is this role, this cloak I now where because of one stupid little dodgy chromosome.

We spend way too much time with doctors and specialists. We spend inordinate amounts of time on various forms of therapy. I have laid awake too many nights, and woken too often in the deep of the night, with an aching pit in my stomach and heart that feels it is about to shatter into a thousand pieces, wondering what the world will hold for my beautiful child as he grows and particularly when he is an adult. We have suffered extreme financial hardship as my capacity to return to work was curtailed and the medical expenses spiralled. We have spent too many days in ambulatory care at Sydney Children’s Hospital. Too many hours in doctors waiting rooms. Too many times giving the potted history of my child’s life to someone else, yet again.

Am I disgusted with our government – the body we elect to ensure none of us get left behind, that those of us without a voice have one – and the woeful level of services and support it offers these children and their families? More than words will ever express.

Am I tired at constantly having to fight for basic rights for my child that are automatically bestowed to children his age who do not have special needs? Of course.

Am I galled at how many people make decisions for him that are actually deeply discriminatory but done so with the best of intentions? Way too often.

And so it goes on. And on.

That lottery, the one that plucks us out from the millions of others, is really really shitty.

So how do we move on, how do we get up each and every day to do it over and over again?

I decided fairly early on in the piece that wallowing in a heap was not going to do much for Oscar. Be proactive, try anything once, ask lots of questions, be nice but in control, never give up – this has been my mantra, my doctrine. Find people you trust, find therapists you would invite to your house for dinner, be open and never lose your ability to laugh, even if it’s through floods of never ending tears, if someone offers support, take it. Find support agencies or people you connect with and never let them go.

For us, in the midst of adjusting to this life and its resident fog (that still settles over our lives with jarring regularity), we came into contact with two remarkable organisations – AGSA and Lifestart. I credit Diane Petrie, at AGSA, and her honesty and humour as getting me through the first five years of Oscar’s life. I simply do not know what I would have done without her words, advice and sometimes, simply a nod and a “it really sucks” to let me know I am not alone in this sometimes hellish world.

Lifestart is a parent co-operative that provides family-centred support programs to over 300 families of children with disabilities across Sydney turned our family from one based on stress and grief to one of empowerment, strength and optimism. We have spent much of the beginning of this year making DADHC see the value of this service (a value they see in that they fund exactly the same service in different parts of Sydney) and provide us with much needed funding. After an intensive campaign involving our local members of parliament, local media and Alan Jones on 2GB actively supporting our cause, we recently learned that not only has funding been allocated, but a tender for the provision of this remarkable support service across all of Sydney announced. A wondrous, albeit hard-fought, victory indeed.

So now Oscar is eight years old and this year has moved into a mainstream Year 2 setting. This is not something to gauge in terms of success or failure, but more a work in progress.

While I am deeply stressed about sending my boy into the wilds of a mainstream school setting, the quiet fortitude of knowing Oscar is having the opportunities and experiences afforded to other children his age, irrespective of his abilities; that he is learning from his classmates and his classmates from him; that there will be a generation of children who grow into adults knowing Oscar and therefore knowing that just because you can't talk or you don't quite learn in the same way, you have value and purpose in life; and that most importantly, you are not to be feared, taunted or spurned purely because you're different - is immeasurable.

I realise this may all sound a bit grim, a bit “it’s dark down here at the coalface”, but it is. Sure, we laugh, we have fun as a family, we do ‘stuff’, but the dodgy chromosome does it with us and that makes it different. Always.