Róisín Ingle on ...

S he comes home from school and says she needs to sing me a song. There’s a low table in the kitchen

; she climbs on top of it, walking slowly up and down to get her bearings. It's a stage she's going through. She stands, eyes closed, in preparation, a shy smile dancing across her face. The other child is pulling at her jeans, distracting her. "That's not very supportive," the singer says and then she's left alone to do her thing.

This little light of mine I'm going to let it shine. This little light of mine, I'm going to let it shine. Let it shine, let it shine, let it shine.

It gets to me. Her voice laying down a yellow brick road in the kitchen, shining like a blast of sudden November sunshine, fizzing like a bag of popping candy that just burst open in my heart. Life’s holy grail being sweetly voiced by a girl who has only been around for four years and seven months. I read a survey that says families with two working parents only spend 36 minutes of quality time with their children each day. I don’t want to believe it. I start adding up the minutes I’ve spent with them today but then I stop because by adding them up I am wasting some of those minutes. The ones here and now in the kitchen as her sister gazes up at the singer, a supportive grin on her face. Little light.

Hide it under a bush? Oh no! I’m going to let it shine. Hide it under a bush? Oh no! I’m going to let it shine.

It gets to me because I’ve been thinking lately about all the stuff that hides the light. All that looking at everyone else, thinking about everyone else. All that time wasted feeling that you should be more, have more, know more until you can’t see yourself or your light anymore. All that lifelight hidden behind the should-have-been, wish-I-was, if-only-I-could shrubbery. And all the self-destructive distractions.

I mean, I hadn’t smoked cigarettes in nearly 15 years and then I found myself taking the odd one and it spiralled somehow until I walked into a shop one day and bought a pack for nearly a tenner! A tenner! And even then I still handed the money over to the shop assistant, took them home, sat in my kitchen and smoked them. What was I doing? I don’t know. Dimming the light. The house stank. I opened all the windows but the light was still obscured under the disgusting grey mist that hung about like a warning and I knew, at least I was as sure as you ever can be, that this was the last time. I got all the bottles out of the house too. And I started again. Again.

Don’t you pfff my little light out, I’m going to let it shine. Don’t you pfff my little light out, I’m going to let it shine.

A couple of years ago they told my friend, the film-maker Simon Fitzmaurice, that he should just let life go. Pfff. That's not very supportive. He has motor neuron disease. Thing is, Simon thinks it's not about how long you live but how you live. They asked him why on earth he wanted to ventilate when he was only going to get worse, when he wouldn't be able to move his arms and legs, when he would need 24-hour-care. They asked him why and his answer was "love". For his wise and beautiful wife Ruth. For his children. For his friends, for his family. Love for life, a love that remains "undimmed, unbowed".

After it was suggested that his light might be pfffed out, he went on to have two more children, twins, bringing the total to five. He is fundraising now so that he can make his latest film My Name Is Emily. You see, Simon wants his little light to shine. He wants to live. It's not about how long, it's about how.

(Whisper it.) This little light of mine, I'm going to let it shine, let it shine, let it shine, let it shine.

I mean, we can only try. That's all we can do. Every day. Every day. Every day. (LOUDER NOW!) THIS LITTLE LIGHT OF MINE, I'M GONNA LET IT SHINE!

I’m in the kitchen, trying and crying. She jumps off the stage, wraps her arms around my neck. “Are you impressed with me Mummy?” she says and the other one jumps up for a “girls’ hug”.

“I am,” I tell them. “I’m very impressed.”

To support My Name Is Emily visit:
indiegogo.com/projects/my-name-is-emily

roisin@irishtimes.com