Julia. hon', you are such an asset to this forum! Thank you so much for taking the time you have to "hang" with us and mentor us through some of the things we're trying to handle.
As for having the issues I have had all my life, that has the beauty of making you used to it very quickly, so even though I took my licks as a kid (and yeah...there were plenty
), I have had 40 years to get used to this thing that has owned my brain from Day One, and it's really not so bad. You can probably tell from my sig that I have had amazing blessings re my outcome with hydro and various effects from it--no shunt surgery in 26 years!! I can't even tell you what a big deal that is. Yeah, I have the occasional "bad brain day," but at least it's occasional, and I can devote most of my energy to seeing to my son's needs. He is doing wonderfully, btw, and I just attended a spectacular autism conference right here in Prov that taught me more than I could have ever imagined. Many affected adults were terrific about reassuring me that I am doing the right things, and that I shouldn't feel any guilt about pushing Drew or yelling at the school for babying him. What that does for a mother's ego, especially after years and years of snotty looks and harsh judgment from so many people, I can't even describe! In fact, re my hydro, the scariest thing that ever happened to me was coming to from a grand mal sz, knowing my then-2 1/2 yo daughter had seen it!
Thank God, she recalls nothing now, but I carried the guilt forever. It's certainly not even close to what you (and your husband and son) went through, but it was bad enough.
I'm so sorry about Rory's anxiety, but it's certainly understandable, and I can imagine he takes a lot of pride in who his mom is.
If not, he sure should!
So...your cognition was undisturbed? No issues with memory? How about things like following oral directions? These are the greatest challenges for me now. I just carted my daughter all over town with several of her friends, going to this one's house and that one's house, and between the waning daylight and the serious problem I have getting from B to C, I am
spent, even though it only took maybe half an hour. Of all my hydro effects, it may not be the most serious, but it sure is the greatest pain in the @$$!
I have an outline to the book I can send to you, if you'd like. I got everybody's thoughts on it, and I think it'll be a good, comprehensive volume. Now we just have to figure out who's writing what parts.
Thank you again for all your encouragement! We're close enough geographically that we'll just have to meet at some point. I would be very honored.
LIZARD