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, July 22, 2010

Made some phone calls

I called the hospital back today and spoke to Wilma, the receptionist at the Opthamology desk. She has booked me in for 10:15 on Monday but she said she doesn't know if Dr Lam will be in but that if I don't see him I should "jump up and down" until I do. She said to just come in and wait for him so I will.

Rich has gone out tonight, kids are both in bed. I haven't made any food again, I was going to but it didn't happen.

We have a healing day at our church soon. Rich has written up on the board "Joel will see" and the date of the healing morning. I have so many questions for God.

I feel like my prayers for Joel have become more of a begging, I want to stand strong in that Joel will be healed, that he will be able to see but I end up crying and just begging Jesus, heal him. Part of me wants to just go and sit in the corner and cry, take myself away from everyone but I know that I need everybody in my life right now. I need God in my life right now, probably more than I have in the 2 years since I started going to church. Someone said that when we were first told Joel had PHPV that we would go through a grieving process for the loss of the "perfect" child, but do you know what the grieving process I am in is really like? It's like being told someone has died, then 2 weeks later - oh no, they are actually alive, then 2 weeks later, oh sorry, no they're dead, 2 weeks later, hang on, they're alive...We get told he won't see, he will see, he can't see, he might see...Well, what is it? What am I supposed to believe?

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