I've been remiss in updating this blog after posting about Manalimo's diagnosis. Part of it has been the end of the semester--between Sunday morning and Tuesday night, I had 3 hours of sleep. But it's more that it's been incredibly painful and I've had as much as I could deal with trying to tell people in person. Writing it down seemed like too much to face.
We had no idea. We thought we had all of the information. I talked to Jan on Friday and she explained that she'd been absolutely stunned as well--she could only remember one other time that something so major had come up during a neurological exam when the preliminary exam came back fine. She said that she'd actually worried that we would accept his referral even having said that CP wasn't something we could handle, and not realize until Manalimo was home that we really couldn't handle it. She felt like it spoke to our abilities as parents to be able to make such a difficult decision, though I told her that it made me feel like a horrible and low person to be able to see a diagnosis and say "no". She reassured us that isn't the case at all.
I'm still very sad, more so since Manalimo's listing appeared on the CHS.FS waiting child list. I just wish we were the right family for him--his face is still in my dreams and I know we'll think of him every day.
It's back in our court now as to when we're ready. We'll let you know when something happens.
To those who've been there for us and expressed your sympathy, brought meals, had us over, thank you. There were times when simply doing day-to-day activities, like preparing meals, were too much to bear and those were the things that got us through.