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

Monday, May 28, 2012

Looking at photos

I've just put up some new photos and it got me thinking. I remember when I first found out Joel had PHPV. I googled it, of course, and came up with all these photos of kids with one small eye, one fake eye, one bad eye, one blind eye. It was horrifying. All of these photos looked so abnormal to me, even the good ones. I couldn't imagine having a child who looked like that. What would people think? What would people say? Will my baby look like those kids? Maybe he will be different, maybe no one will be able to tell. Maybe we'll be lucky. The parents had posted these pictures with comments like "just like every other two year old!" or "Little Jonny playing in the yard". I thought, how could they think that their child is really just like every other kid? They're kidding themselves. OBVIOUSLY they're different, they must just be saying that to make themselves feel better. Well you know what? Joel IS like every other kid. He climbs, plays, rides a bike and causes chaos and destruction a hundred times a day. He has an adventurous streak and no fear. He is sweet and loving and affectionate and holds a grudge if he gets in trouble. His eye does not hold him back at all. Not in any way. If you're looking at these pictures of Joel for the first time, the good and the bad pictures, I know how you feel. I know how your heart breaks thinking your child is going to be different and how unfair it is and how you wonder how you'll get through it. The uncertainty is infuriating. It's frustrating and depressing not knowing how your child is going to turn out. Not knowing if they'll be able to see eventually, how many operations they'll have, if they'll end up with a prosthetic eye or glasses or a contact lens. One thing I can say with 100% certainty is that in 2 years time, your child WILL be just like every other child. Nothing will hold them back. Nothing. Sure they might bump in to the odd wall or miss a step, but what kid doesn't. There will be people who will notice there is something different but most of the time, they won't say anything. You will just know that they've noticed. You'll pick it up after a while. and that's fine, it doesn't matter. Let them notice. Let them wonder. If they ask, just tell the truth. After a while of telling it, you won't cry anymore. It won't bother you. You'll realise that yeah, PHPV does suck and it's not fair that it happened to you and your baby, but it won't be all consuming. It won't be the first thing you think about when you wake up and the last thing on your mind at night. You won't think about it during the day and well up. It will just "be" and that's fine. You will be fine. Your baby will be fine. You'll surprise yourself and your child will surprise you, it really will be ok.