((((((Hugs to All)))))) ~
Mary Grace ~ I can't access the Halloween photos. It could be the Firefox browser, which was just updated. It's supposed to be better. It's not. I was able to view the other photos. Kathleen is so full of JOY!
Donna ~ I composed a rather lengthy response (no surprise there!) to your questions about having a diagnosis, because it's complicated. I wasn't sure whether it was appropriate to post it here in the update thread.
It was nearly 50 years ago, so options for diagnoses weren't as available as they are now. We were told it might be a recessive gene, and that engendered major guilt for me. Both of our families blamed the other family for the "bad genes." We were given false hope, and genetic testing revealed nothing time after time.
Finally, I recognized that a diagnosis wouldn't change anything. It wouldn't change the services or medical care or educational opportunities they received. It wouldn't stop doctors from predicting their demise ("He probably won't live beyond the age of ... {fill in the blank}." It wouldn't change my love and devotion for my boys, nor my life long commitment to their care.
I would have had to wage the same battles for them, and their health would have declined regardless of whether we had a label for their condition.
None of the physicians through their early years were very adept at delivering bad news. Then there were doctors, like the one, when Jon was 13 and had a 6 hour seizure. He said, "Why don't you put him in an institution and get on with your life?"
If every physician stopped to think about how s/he would feel if they were the one receiving the news, or if it was one of their relatives or friends, I think they might temper their delivery with more compassion. It's so easy to gently touch someone's hands, look into their eyes, and say, "I'm so very sorry. I wish that there was anything else other than this to tell you. And, I want to assure you that I am and will be here for you and your loved, along with all of our staff." Then deliver the bad news, whatever it is.
The other aspect of delivering this news is also providing hope, even in dire circumstances. Not false hope, but hope that all that can be done will be done for our loved one.
That's the shortened version!
funnylegs4 ~ I agree with you. I'd rather know than not know.
Love & Light,
Rose