I would have stood on my head and burped the alphabet if it kept him happy.

Note: I am OK and so is Oscar. Sometimes you need to write something to get it out of your system. I tire of trying to make our family’s experience – Oscar’s experience – sound less taxing than it is.  Of making it funny in order to make others feel more comfortable. To seem less like I am whinging.  It is exhausting worrying whether people think you are revelling in the attention that inevitably comes from having a child like Oscar.  Let it be known – there is no revelling.

The business of having a child in hospital is ugly.

For them and for you.

Whether its a small procedure or a major surgery. For one day, one night, one week.

It’s painful, frustrating and more than distressing.

Blood, sweat, but mostly tears.

As much mine as Oscar’s.

When he was born, so small. A fetus out of his womb, unable to breathe unassisted, encased in stretched, transparently red skin. I thought that all he needed was to grow. To feed and to fatten.

I never in my wildest nightmares imagined an extended, drawn out process of appointments, check ups and surgeries.

Even when they found his heart condition. Even when they sat and prepared me heavily for the unbearable – that he might not make it.

Even then I thought that fixed or not, that day would be the end of it.

Every time we enter hospital anew, I prepare myself for a longer stay than anticipated.

Every appointment I prepare myself for immediate admittance.

Pack the bags with the clothes that I know will be easiest to dress him in around tubes, lines and monitors.

Clothes that I know he will be comfortable in.

Most of the time he ends up naked all except for a nappy and maybe a singlet. Hospitals, for all of their well meaning clinical professionalism, are often sweaty, stifling places. Full of hot tears and frustrated cries.

I wonder, sometimes, if he’ll ever get used to it. If he will ever sit passively and allow the inevitable to happen. It would be easier, you see. For me. I don’t know if I can stand to watch him shake his head in protest, thrash against grown men as they hold him down. As he is sedated because he throws them off, shakes them away. His enraged, swollen, tear stained eyes glazing over and he can no longer see me, feel me there.

They ask every time if you would prefer to leave. Prefer not to see your child so distressed. Prefer not to hear them as they swear under their breath. They only want to help him but he doesn’t care. These grown ups in their gloves with their deceptive smiles. He knows now, that with those smiles there is an ulterior motive.

But how can I leave when I know he is so defiant? How can I look away when he has no choice? So I stand my ground, stroke his tears away and promise, with all my heart, that soon it will be done. Soon they will finish and he will be mine again.

And when they release him, with his arm trussed and bandaged. A cannula held in place at his inner elbow with two foam boards because he began to bend the first within seconds of its placement. When he is lifted into my arms and we all sag in relief that it’s over. We all hope and laugh that this cannula will be allowed to stay by the Strong Boy. By the Fighter.

When he holds me and hides his face in my hair.

Whispers his last whimpers into my hair. Sniffles as my tears flow onto his arm, flung across my chest and gripping my sleeve.  As his body relaxes and his fear abates.

When it is done, I know that the reason he has survived is because of this fight he has.

This defiance that he will not be made to lie down.

He will not ever give in.

He will always fight

And I will always be glad of it.