Don't be discouraged

I've been thinking a lot about how things have gone with Joel. When we first started on this PHPV journey, I was sure he would be one of the "lucky" ones and get great vision from his eye, it would look as normal as possible, it would grow and we'd have minimal trouble with it.

The fact is that we have had a bad outcome from our situation. He's had 3 operations and still nothing and the surgeries have made his pupil very misshapen and his eye black and unseeing. It is not a good outcome.

I just don't want any other parents who read this to be discouraged. There HAS to be good outcomes with some PHPV kids. Why not yours? Why shouldn't your baby be one of the miracle outsomes? Keep believing for that. I've seen photos of some and read stories of others who have had amazing results. Just because we haven't had the dream outcome we wanted, doesn't mean that your child won't get that, that they may be able to see, their eye will look and function as normally as can be expected with a birth defect and that people may not ever notice there is anything wrong with their eye.

And, you know what? Even if they DON'T get the outcome you want, they will be fine. You will be fine. Gradually you will come to an acceptance about things and learn to love that little eye staring blindly back at you. It's so easy to love a baby when they are "perfect" but when you have to deal with a birth defect and the grieving process that goes along with that, that is when you can really feel and define unconditional love.