A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS

Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".


Perth, Western Australia

Friday, June 24, 2011

Proud of my kids

When Annalise was little, I was so proud of her for a lot of things - most of those were things that every parent would be proud of. I was proud because she was so clever, walked, talked a lot and had heaps of words, was sociable, cute with a huge personality.

I am proud of Joel for those same things too, but there are other things that make me more proud. Like when I can see he is struggling slightly with trying to work out how far away something is, a pencil he's trying to grab. I am so proud when he picks it up first try and starts scribbling.

Annalise was asked by another little girl the other day "what's wrong with your brother's eye?". Straight away she said "he has one eye open and one eye closed but today both are open". She was proud of him for having a "good eye day!" Both eyes were open and to her, that's pretty great. The other little girl said "yeah but it's all yucky". Annalise looked at Joel and said "That's his sore eye". The other girl seemed happy with that and although she kept looking at his eye, they continued playing and nothing more was said. This is the first time anyone has ever asked her about his eye and I couldn't have been more proud or happier with the way she responded. To her, it's nothing. To us, he's just Joel. To everyone who knows him, he's perfect.

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