Sunday, 22 November 2015
I'm not sure what words will describe how I'm feeling right now, but I did feel the need to get all this out, even if it is extremely personal. Actually, I do know what words will work. I just can't repeat them in polite company.
I have found it harder and harder to hold on to my emotions these past few weeks. I'm sure Jules can see the worry in my eyes whenever he gets out of breath, despite my best intentions to hide it from him. I'm trying desperately to stay calm when he collapses to the floor, resorting to pathetic jokes about how out of shape I am while I put my arms around him from behind and help him to stand up.
When I think about what's coming up, my heart races. I feel sick. My hands tremble. So does my chin. Hell, my whole body does. My throat gets tight and starts to ache. But I grit my teeth and swallow it all back down.
Because Will and I only cry when Julian's gone to bed. He's not supposed to be our rock, and he's not supposed to see our tears. We can't put that responsibility on him.
Dammit. It's not fair.
A few months ago, while Julian & Will were in New Zealand - thanks to the generosity of a number of people - we found out that there were a few locals getting quite nasty about us because we had started a GoFundMe page for Julian to travel to New Zealand. To fulfill his big dream before starting 'Veletri'. One of the things that was said was that we "always had our hands out, just because we had a 'sick' child". There's a long story behind that. I won't bore you with the details though.
If only. If only he was just 'sick'. I would do anything for just 'sick', instead of terminal 'terminal' and 'incurable'.
You know, on a day to day basis I can usually ignore the fact that my son is dying, bit by bit. One heartbeat at a time. Most days, it's easy. Julian looks 'fine'. He's got great colour. He growing so tall, and his feet are bigger than his Dad's! He's funny, he's a ratbag, he's so much fun to be around.
And then, out of nowhere, he goes pale. He struggles to breath. His heart pounds so hard that it vibrates the sleeve of my own shirt when I put my hand on his chest to check his heart rate. His heart races so fast I can't keep count of the beats. He collapses to the floor and can't get up without help.
He wakes up out of breath.
I'm just happy he wakes up.