It was February 2005 when I learnt that my little boy of 8 months old had cancer in both his eyes and would have to have one removed immediately.
As a first time mother, with no family history of eye problems, this came as rather a shock. Things moved very fast, with ennucleation a week later, then chemotherapy (to save the other eye) starting a week after that. It’s very hard to take in anything at that time – you’re concentrating on not falling apart so that your child can have a “happy mummy” and be reassured within all the weirdness going on.
But at some point, you start to have questions that the doctors don’t seem able to answer, that you may not even feel able to ask them – will he notice the loss of the eye as he’s growing up? How will it affect his life? What does it mean to have a child with bilateral retinoblastoma?
Here in WA, Paul & Jenny Geelen are amazingly helpful and reassuring, but even they mentioned that they wished they could get their clients together so they could talk to each other – but it just never seemed to happen! Red rag to a bull, I immediately set up a yahoo group for people in WA, then agreed that opening it to all of Australia would be a good idea. It’s gone through a couple of name changes since, but ArtEyes is that group.
Then we started planning a picnic in November 2005 – our first ArtEyesWA event. We had a fantastic turnout, with Paul & Jenny sending flyers to all of their clients to tell them about the new group and the picnic. We now have 2 events per year – the picnic is always the first Sunday in November – a great family event.
So that’s what ArtEyes is all about. Getting people together to talk about eye loss, or just not have to worry about what others are thinking when they mention their eye. It’s for mothers and fathers, for kids and adults who’ve grown up with artificial eyes, and for those who’ve lost an eye later in life and are finding things a challenge, emotionally and practically.
If there is no group in your area, why not contact your nearest ocularist and talk about getting something started?