NordicGirl, thank you for your kind words. Don't feel sorry for us or our daughter - when she was born, we thought that the world as we knew it had ended. We wanted to grab every couple with a "perfect" new baby and remind them of how lucky they were. Less than 6 months later, we wanted to grab those same couples and tell them how lucky WE were! We don't know what we did "right" to have been given this wonderful child, but we've already told God that he can't have her back.....

Incidentally, she turns 9 years old on Saturday (the picture by my name is one of her when she was 18 months old, taken by her oldest sister) - when I think back to how scared we were right after her birth, I am reminded of how truly blessed we have been. She's a real character, and we have the great good fortune to have a school near us that caters to kids with DS. She is doing better than we ever could have hoped!

The scariest thing with an MG diagnosis is the unknown. We had the same fear when Rebecca was born - we just wanted some reassurance that she was going to be OK. We honestly didn't know if we had it in us to handle what we had been given. As time went on, though, we realized that you just have to take things one day at a time, one obstacle at a time. A couple of years later, we realized that we were doing just fine - life had gone on, and we had adjusted to our new reality.

The same thing will happen for you with the MG - there will be good days and bad days, but that's true whether you have a disease or not; you just accept it for what it is, and learn how to incorporate it into your everyday life. It's going to take time, and you can't speed up time.

Here's a copy of an essay that we received after Rebecca was born, "Welcome to Holland" by Emily Perl Kingsley. It talks about dealing with life after something unexpected happens. Even though it was written primarily for families whose child had been born "different", I think it applies just as well for people who have received an unexpected diagnosis -

http://www.ndsccenter.org/resources/package1.php