You may not know when you see me but I am actually legally blind. I have bilateral colabomas in the optic nerves. Because of this I have light sensitivity, difficulty with depth perception and facial recognition. One eye is smaller than the other.

I also need to hold things close and sometimes need to lean close to see. Because I am also deaf I will lean heavily on things while walking, squeeze people hard to help me balance and hold things close to hear and see.

Lately my left eye has been having more glare problems than usual. It also has been sore and watery. I think my cataract may have enlarged and need removing.



I had a lovely Easter weekend. On Friday me and mum went to the Taronga Zoo wildlife retreat. It is a beautiful sanctuary in the zoo with beautiful views over Sydney harbour and the zoo.

The rooms had floor to ceiling windows where you looked out the window into the trees and Koala’s. The food was very yummy and I ate hot chips. We walked around the Zoo and the Sanctuary both were amazing. In the Sanctuary a small animal hopped onto my footplate and started eating.

On Saturday we went into the City and had a walk around after my neuro feedback appointment. We got me some new t shirts and then we came home. On Sunday we just relaxed and cleaned out my wardrobe.

Yesterday we went to Barangaroo. It is very busy and populated but the reserve is lovely and quiet. Walking around to Circular Quay it was a lovely surprise to see a cruise ship in the harbour as this means things are finally back to normal after over 2 years.

Learning how to become less obsessive and give people space

Over the years I sometimes can and have been very attached to cetain people to the extent where I sometimes pushed them away. I say it is common in CHARGE syndrome but I feel like it is common in many other disabilities to because we can’t exactly just go and do things without planning.

It has taken me a long time to be better and sometimes I still struggle. But I feel what has helped me is stepping away from things that connect me to people for a bit. One example is people on Facebook or messenger. If I am messaging certain people too much and not giving them time to answer I will put my phone or Ipad down and read, spend time with family and friends or even just relaxing. If I’m obsessing on people at home or even respite and Lifeskills I try to talk to other ppl or go into my room and do something else.

It has taken me a long time to get to this point but I keep trying every day because I value the people I do have in my life, but I also value my own health and happiness. I didn’t get here easy. It took people blocking me, people telling me If I kept it up I wouldn’t be able to be with certain people again and just trying to broaden my networks. Basically that means on fb not talking to the same people all the time or in respite talking to the other clients that come in on the weekend.

I think I will always need to work at it but I feel happy with how far I have come. I have stronger connections, better health and a happier mindset. Some things I like doing on my Ipad that isn’t talking or looking at social media are colouring, playing word games or card games, watching different things and also just reading.

I believe everyone can try some of these things and it will greatly help. People may not always come back but I have learnt the true friends and family always will no matter what.


my wishes for my birthday

I don’t know where the time has gone but in June I will be 37. There are times when I feel I don’t deserve it because I don’t always act my age. I try hard to be a better person but not everyone sees how hard I try.

My wishes for this year are to have a nice celebration with my family and friends in my house. I want everyone around me to be happy and healthy.

I want to go somewhere nice for a few days with a few friends and relax. I want some nice things I can use but I would also like to keep improving myself.