A few weeks ago a bunch of awesomeness attended the Precious Hearts Trivia Night with me – I spoke about Oscar’s journey on the night, you can read about it here With Some Grace. Writing that speech has opened the floodgates to my memories of Oscar’s first few weeks, right through until now.
As Pal and I drove through the night, from Canberra to Sydney, we made promises.
To one another. To Oscar.
A few hours before, he’d had a congenital heart disease discovered, been ventilated, prepared, stabilized. He’s had the dreaded screen brought in and out around him so that his vulnerable little self could not be gawked at.
Because the NICU is a giant fishbowl. A friendly fishbowl, full of only concern, love and support. But a fishbowl nonetheless. Full of families hoping that the Screen of Holy Shit What Is Happening Over There stays far far away from their own, tiny squawks.
And as the screen was taken away, and my baby in a box was revealed in all his ventilated, poked, prodded and obviously entirely unwell glory, I sobbed.
I did a lot of sobbing that night.
Sobbing for the babe I was following to god knows where for god knows what.
Sobbing for the babe I was leaving behind.
I held Fraser, I think so tightly some may have worried for his safety. I sobbed into his wraps as I fed him for the last time in I didn’t know how long.
I was exhausted already from only an hour of running between the NICU and SCU since we’d
Been told. Eventually one of the nurses took pity on me and wheeled Frasers cot next to my chair. And she spoke to me softly, kindly, in her lilting accent:
“Remember? It was only a few nights ago you couldn’t leave? You had to be here. Watching that boy, all night. You knew something was on its way. And now we know.”
And although her words seemed flippant, they were not.
I had known. I had felt that pressure. I hadn’t been able to leave. That nurse had set me up on an armchair with a pillow and a blanket and I had watched over my two babes in between beeps, and blood pressure checks, nappy changes and feeds and beeping. So much beeping. But I dozed in and out, always with my eyes on those boys. Those babies in boxes.
But no one told me I should leave – that night. No one suggested I go and get some rest. That nurse, she knew I needed to be there that night.
And she kept her hand on my shoulder, as I held and sobbed into one babe while the other’s chest heaved with unnatural, artificial breath. The pressure of her palm keeping me from evaporating with grief.
We didn’t know. We didn’t know if he would be ok. We didn’t know the extent o his condition.
And despite being told numerous times in numerous ways (they even drew me pictures, for feck’s sake) I couldn’t understand
All I kept hearing was that they had to give him medication that stopped him breathing, in order to keep his heart going.
And the irony of that. The juxtaposition of one vital to life function being ceased in order to save another. It felt so wrong. So wrong I nearly laughed.
And so I cried.
And as I left one babe to follow another, my heart broke and I died a thousand deaths.
I couldn’t bear to think something might happen to my Buster while I was gone. My mate. My pretend prem. My boy. I couldn’t bear to leave.
But I couldn’t bear to stay.
And so I went with Pal, in the car. Counting the time, waiting for the promised phone call that the chopper had arrived, that the little baby in a box was there safe. Stable.
And we promised each other, Pal and I.
We promised that if this boy made it through this, any life he had left to love would be LIVED.
Fully. Unapologetically. Whatever he was capable of he would be encouraged in.
We promised that this precious boy, this broken boy, would not live in cotton wool. Would not be sheltered, or impeded. We would not block him. Build obstacles for him.
If he lived, he would LIVE. So help us.
And then last night, Pal retrieved this from the mail box:
And the night before his annual cardiology check up, I cried.
I am keeping my promise. I am.
Developmentally, at the very least, this boy is normal.
I’ve said it before and I’ll say it again:
Normal is FUCKING AWESOME.