Friday 30 September 2016



4 years since a 4 year old taught me how to live.


It's a long one this evening, bear with me.

1096 days. That's four years. It's been exactly 4 years since a 4 year old taught me how to live.
Its been 1096 since I stood in the Black Box as part of a choir. This way no ordinary choir. It was a choir made up of over 200 people wearing purple t-shirts. There were a lot of purple tshirts, and a lot of tears. We were not singing for a mass or concert, the usual places you might expect to find a choir. We were in the Black Box in Galway singing Elton John's hit Tiny Dancer for Lily Mae.

Tiny Dancer Recording- September 30th 2013.


If you're unfamiliar with Lily Mae's story you can click here to read my post explaining it.
There have been beautiful piece written online today on Tiny Dancer, on what is was and continues to be. Having written about that day 4 years ago, today I'll focus on the impact that day has had on me over the past four years. I will say, that I'm not the same person I was before that day. Anyone who was there would agree, it was an emotional day, magic and tragic all at once.

1096 days. 1096 days none of us reading this today were guaranteed, but presumed we'd have. Sitting here today, reading this, means that although you were not guaranteed these days, you got them. Not everyone was so lucky, not every child was this lucky. I dread to think of the number of children that have been lost to childhood cancer in this time. Chances are you weren't overly aware you weren't guaranteed these days. Most of us go through life presuming we'll wake up the next day. Two people who were extremely aware of the falseness of this guarantee are Jude and Leighton, Lily-Mae's parents. They had to live the horrific reality that their child was not guaranteed a future. Living day to day is a lot easier said than done, imagine trying to that knowing your child might not make it to their next birthday. The only thing can get someone through that is hope. No one's future is guaranteed but we have to hope it is. Lily Mae's parents showed incredible strength and bravery, grasping onto hope. I cannot imagine what it is like facing this fear and having to put on a brave face for your precious child. I never want to know.

Fast forward 4 years later and Lily Mae is a healthy, thriving 8 year old. What a stark contrast there are between these two photos. The first photo is one her parents never dreamed they'd take, the second, a photo they hoped and prayed they'd be able to take.
I've had the pleasure of meeting Lily Mae many times, the first time when she was a beautiful blued eyed baby. A few weeks ago I spoke to her about 'sparkly' cup cakes, she complimented my hair, I complemented her cape.(Because if you can't wear a gold cape when you're 8 when can you?!) These are the type of things children should be discussing, not when they'll be allowed to leave the hospital and go home.
Lily Mae during treatment

The past 4 years have taught me a lot. I used to care about how I looked, I used to care about my 'social standing'. Now I don't. I wasn't confident. Now I have the confidence I lacked. Why? Partly because I've grown up but mainly because a four year old taught me how to live. Seeing a four year old face horrific treatments with a smile, made me cop on, frankly. Seeing her Mother, (my childhood ballet teacher and now someone I'd like to think of as a close friend), fighting the battle of her life for her child made me cop on. Other things don't matter, your health is your wealth. Do what you love, enjoy your life. It sounds clichéd but clichés are clichés for a reason. Lily Mae is now a happy and carefree 8 year old. Being carefree is something we should all strive for. I now dance again, I stopped dancing before Tiny Dancer. I didn't feel confident enough, I didn't feel good enough. I though I was too bad at it, too fat, too uncoordinated. Now I dance like no one's watching. Life is too short not to. Be like Lily Mae in your day to day life, carefree. On tougher days, be like Jude and every 'cancer' parent....be  strong, be brave.


Tiny Dancer was and continues to be a phenomenon. Having researched and written a thesis on the subject I can guarantee you that more people are aware of childhood cancer because of it, particularly neuroblastoma.
 Those of us not spending our days in labs researching feel helpless, children are dying, what can we do? We can do what the Irish do best, talk, talk and then talk some more. Talk about childhood cancer. People don't tend to want to discuss it, it's something you 'see  on tv or read about online. It doesn't happen in real life. They are different parents'. They're not. The day before diagnosis every parent of a sick child is the parent of a healthy child. They are thrown into hell overnight. All those of us lucky enough not to be in their situation can do is talk. Talk about it and share stories online these small things raise awareness.

Awareness = Funding= Research= A Cure.

Childhood cancer is massively underfunded, because of this children's tiny bodies are being subjected to horrific treatments designed for adults.  Talk, talk, talk. We are nothing without our children.

Having had the honour of being part (a very small part) of the 'childhood cancer' world over the past four years, mainly online,  I have a better view of the world. I helped out at the Light It Up Gold Walk in Galway earlier this month. (A fantastic event organised by Lily Mae's Mum) All I saw were caring people, brave children and passionate parents. I spoke to parents that still managed to stick a smile on their face despite having lost a child to cancer. They were polite and pleasant. They have every right to be angry, to hate the world. Instead they continue to raise awareness to defeat the monster that took their beautiful child. I laughed with a child about a balloon, a child that is battling cancer for the second time. There was not one bad person there that day. Despite all the cruelty going on in the world, especially that we are increasingly aware of of late,  it was evident to me that there is a lot more good out there than bad. 7 children in Ireland lost their lives to childhood cancer last August. 7 children who gained their angel wings, 7 families lives destroyed forever. Angels are beautiful, but there are enough.

Although Childhood Cancer Awareness Month has come to an end, childhood cancer has not.

Do what you can to help:

Watch the Tiny Dancer music video again here. Share it!

Talk, talk, talk.


Thank you for reading this and Lily Mae, thank you for teaching me how to live, I'll see you soon x