Starlight Stories

Not sponsored

Last night we went to the Lend Lease Darling Quarter Theatre in Darling Harbour to a function for Rob’s work. They are a huge sponsor of the Starlight Foundation and there was a production at the theatre about inspirational stories of people who’ve been touched by the magnificent work of Starlight or people who work within the foundation.

I had absolutely no idea what I was going to see. I knew it was a stage production for Rob’s work and that was it. Rob has a habit of emailing me work function details with a short one liner of “we should go to this it would be good” and then I hear nothing until about a week (usually less) before the event when I get a phone call at a really convenient time like 5.30pm reminding me are going TOMORROW.

To be honest I didn’t really want to go, it started at 5.30pm in town and the logistics of making that happen with four kids on a school night is pretty painful. But went I did and it was brilliant, moving, tear jerking and enormously confronting. Plus I got to dress up in a fancy frock and enormous heels so HELLO. I was there.

When we arrived there were drinks and canapes outside the theatre in the sunshine by the water. Very grown up and far away from the arsenic hour that I knew my babysitter was enduring at home.

I got to see a few of Rob’s colleagues and their partners who’d also just returned from many years in London. We all had a lovely little reminisce about England and how much we loved the UK and all agreed that although we love Sydney, we’d still rather be in London and for the first time in a few months I felt understood and normal.

Showtime. The production was a narrative. Eight actors relaying word for word interviews with parents of either terminally ill or disabled children, Starlight volunteers and the very amazing Captain Starlight.

It was about these people’s experience of Starlight, how their involvement with Starlight came about and how it changed their lives. It was in particular the mother of a terminally ill three year old that affected me the most, I don’t think there was a single parent in the audience that didn’t go home and give their kids extra cuddles last night.

Unfortunately I didn’t wear waterproof mascara. Even the guy on the other side of me was sobbing. Grown men leaking tears – it was beautiful in a distressing sort of way.

There is nothing quite like a confronting scene like what we saw to smack you back down to reality. To make all the things our modern society values seem irrelevant and silly. Wealth, status, fancy cars, big houses – what is the point in them if your child is dying?

Lessons in unconditional love. A mother of a twenty-five year old disabled woman who was born deaf and with other physical disabilities and into adulthood lost her sight as well. Her stories of learning to see the beauty in the small things that her daughter had taught her – the sun on her face, the smell of the sea. When you can’t hear or see but can still feel the good in life.

I need to learn from that.

When it finished we all put our tissues away and left the theatre. When Rob and I said goodbye to everyone I turned to him and said “I feel so bad about last night”.

Our littlest, Jude, has been waking every night and screaming his head off from about 2am until 5am. Rob and I are into our tenth year of sleep deprivation now so our tolerance is very low. The night previously when Jude ended up in our bed again having woken up all of the other kids, in my sleep deprived irrational state might have turned to Rob and said (and I cannot believe I’m admitting this) .. “It’s all your fault we even have a fourth child so you can get up to him next”.

Even writing that kills me but yep, I said it. I really hope I’m not the only one who in the past has said things like that in the heat of the moment. Or maybe I’m just the only one stupid enough to admit it and publish it on the internet?

So last night, when Jude woke up again it was different. He is alive and well and not terminally ill. We didn’t lose our tempers like we normally do. It was a bit crap having yet another night of sleep broken but it’s not going to kill us.

Perspective, people. It really sucks that humans are stupid, that we forget about the important stuff. It sucks that I have to learn from other terribly unfortunate families that are suffering so much yet still have so much to give.

I was humbled. Completely and utterly humbled.