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

Thursday, June 24, 2010

Green eyed monster

I have been debating whether or not to post this. I think there's a line between being honest and giving away too much of how I'm feeling but this just keeps coming up for me and I want to get it out.

I get really jealous, sad, angry and disappointed when I see a toddler with perfect eyes. All I can think is "Joel will never look like that". It kills me, it breaks my heart. I see this gorgeous little face looking at me and having this conversation with me, whether it's at the shops, park, playground - wherever - and I just get so sad that my little boy will never have these two perfect big round eyes. It just makes me so sad that I can't even look at another child without that thought in my head.

To me he is perfect. To me he is handsome and sweet and so loving and affectionate, so the feeling is contradictory. I want to not think "Joel will never look like that". I want to just appreciate the beauty in every child. I wish I could just talk to these other kids and think "wow, they're cute." But I can't. I hope over time it goes away.


  1. Oh Tracie, massive hugs! Although I'm not going through or have experience with anything you are going through, it sounds completely valid to me. You are going through a grieving process, you need to allow yourself to acknowledge these feelings. I imagine that in your situation they are completely normal. Joel is gorgeous and perfect and you are a wonderul mother, but when we are growing our bubs we imagine a perfectly healthy babe. When reality doesn't meet those expectations, we grieve and mourn what could have been. I'd imagine it will get easier with time. You have been through so much in a short period of time.
    Much love and blessings, Vic xx

  2. It is almost like you are grieving for what might have been. I felt the same when I was told Tully needed glasses (and very thick ones) I was devastated! My perfect little girl was not so any more (I know now that was not true, she is and always will be perfect to me). But all the negatives kept creeping into my head, silly things, like how will I hug her without her glasses getting in the way, kids at school will make fun of her, how will she play sport...... But then I suddenly realised how lucky I was to have her and you know what, she couldn't care less that she has to wear glasses. She doesn't know any different and neither will Joel. That will just be who he is. Just look at your beautiful babies smile and remember that he loves you no matter what!

  3. You're not alone in the way you feel - I too have the exact same thoughts and pray that one of these days it will go away.

  4. I remember feeling the exact same feelings when finding out Afrika is deaf. It has gone away but I have no idea how i'm going to handle it when I have to put the big headband hearing aid on her later this year.

    Just out of curiosity, do you get the feelings when you look at your own daughter, or is it just when you see other children/families?

    Joel is lucky to have such a fantastic mummy x

  5. Thanks for the comments ladies.

    Cassie, I do think that when I look at Annalise. She has the most beautiful big brown eyes and they're the feature we've always loved most about her. It's so hard not to feel sorry for J when I think like that and I really don't want to feel sorry for him because he's never going to know any different. I also think that way when I have a particularly trying day with Joel, putting the drops in or the lens in and I just think "If it wasn't for his eye, we'd just go about our daily life without having to stop all the time to do something to it" :-( It just feels all a bit unfair sometimes.