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".

traciereinikka@hotmail.com

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?

No comments:

Post a Comment