For the Love of Jack

The winding road of severe disability

Imagine that you have a physical journey that you navigate every day. It’s a familiar road on which you travel. A straight highway if you like. Well maintained, multi lanes. For the most part reliable and efficient.

Let’s call this road the “M1” (which incidentally is a real highway in which connects the coastal area which I live in New South Wales Australia, to Sydney, which is about 90 minutes away).

You travel this road daily, you can’t imagine travelling any other way.

Then you have a child, and for a time you still travel the M1. But gradually or suddenly you are told, “no, sorry, the M1 is no longer for you, from now on you will be travelling the Old Pacific Highway”.

The Old Pacific Highway is also a real road that links the Central Coast with Sydney. Before the M1 was built that was how we got to Sydney. I have many a childhood memory of sitting in the back of my uncle’s car, in the middle of a sweltering Australian summer, no air-conditioning, literally sliding around in my own sweat. Our uncle would have collected us from the Airport, on one of our many trips over from New Zealand to visit my Mum’s family. It was a long journey, with frequent stops to allow a travel sick me to puke on the side of the road.

The Old Pacific Highway is a motorcyclist’s dream. But you would not choose to travel it daily. It’s main use these days, apart from Harley riders, is a detour, if the M1 is blocked by a serious accident.

It is a road of sharp turns, ups and downs, twists and turns. A road to be navigated with care, lest you lose skin, or worse.

Such is the life turned upside down by a diagnosis of a severe disability.

My son is an amazing gift, and it is a privilege to be his mother. He started having seizures and lost his speech a little after he turned 2. I threw my life into him. He was long-awaited and was preceded by several heartbreaks.

He is my greatest human inspiration and I love him dearly.

His father and I had been together 10 years (married 4) when he came along. There were many early signs that I had made a terrible mistake in marrying this person, but I pushed that aside for the sake of my son.

On the day he was diagnosed his Dad accused me of ‘opening a can of worms’.

I still don’t know what that means.

But I have endured the winding road of disability ever since. I have been profoundly changed. I have learned the meaning of sacrificial love, been bruised and battered and had my heart shattered more than I care to remember.

I stayed in an emotionally abusive relationship until he was 14. I stayed because I couldn’t get away, not until a path was cleared for me, but that is another story.

Now I grieve the loss of my son, because he is now 18, living full-time with his father and I don’t know when I will see him again.

But I do know this. I love him, and nothing the haters can say can change that.

Such is the Mother’s heart.