Somehow we went from this:
Oscar was 10 days old when they told us he had a rare genetic disorder. We were having cuddles with him, something so precious in the Neonatal Intensive Care Unit, and I looked down at him thinking all the while, “I can’t fix this, this is in every cell, every structure, every drop of blood coursing through your veins”. I looked at the doctor and said, “But he’s perfect”.
There have been plenty of moments since then where I have felt just as hopeless.
The nursing educator of the unit, a wondrous woman, told me with a steely edge in her voice which meant business that if all of us had our genes tested it’d throw up some pretty interesting findings and to just raise him and treat him just as we would did we not know about his dodgy chromosome four.
And here we all stand, 15 years down. It’s so easy to look at Oscar – and indeed any person with special needs or a disability – as a series of deficits, a catalogue of failed milestones, of endless worry. But I’m still not sure how that actually benefits Oscar.
So who is this boy of mine?
His best mate is Josh.
He loves WWE wrestling, AFL, soccer, playing xbox and listening to music.
He is outrageously nosey and social. He knows all our neighbours – some of which I still haven’t met.
He has a heart as big as an ocean.
He’s good on the tooth.
For me, the greatest challenge is to not just parent the disability. It is so easy to fall into the functional – trying to bed down routines can take (and still are) years, the doctor appointments, the therapies, the assessments – that I forget the teenager wanting to listen to his music, hang out with his friends and flex the freedom I so easily bestow to his younger brothers.
How do you loosen the reigns when the potential for disaster is so great?
I know two families whose disabled children are now in their 20s and they tell me they’ve just had their worst year ever, both due to issues of mental health. In the Christmas break I witnessed Oscar having what I thought were fairly obvious anxiety attacks but he can’t articulate it and I don’t want to put words in his mouth.
Mental health issues and an intellectual disability. How you like them apples?
But you know what, it is what it is.
I have to look to Oscar – is he happy, is he stimulated, does he feel like a part of something, does he feel loved, safe and secure – and take my cues from him. And when I do that? I think we’re all doing ok.
In this house we might fall down seven times but we rise up eight.