I dont post here as often as I want to. I think about it. I even "write" posts in my head. But life is so full that by the time I sit on the couch at night, I am exhausted.
G is doing great. I feel like Marfan Syndrome has woven itself into her life now and its okay. We are fine. The world didnt crumble around us and we are moving forward.
2 comments:
I just wanted to touch base to lend support. I remember too well the devastation upon learning our newborn had Marfan Syndrome. The internet didn't give us promising news at that time as our son's case was deemed severe. But he's 10 now & hanging in there. He's had many surgeries but through it all he remains the most cheerful, well-balanced child I've ever known. Feel free to email .... questions, venting, chit chat. Sometimes it really does help when you feel like no one else out there understands.....Denise
mganddg@comcast.net
I've been blogging about Marfans and thought to share my blog with you. I was diagnosed as a child, but only began to write in the last few years. It has been a welcome release. If it helps or gives you a sense of commonality, I am glad that my writing served a wider purpose.
I agree with the other comment posted...feeling that others might understand helps with the loneliness and frustration sometimes.
Best health always.
http://marfan-syndrome-blog.blogspot.com/
Post a Comment