This particular topic has been discussed recently on one of my message boards. Its not something in the forefront of my mind right now, but I have definately had days where its the only thing I can think about. I've copied and tweaked a posting from a friend's website as its so relevant. I think most of the women agreed that people don't mean harm when they say "they can fix that". They are just trying to be positive. Its just that there are days when even postive ignorance can really get on your nerves.
Stranger says: "Oh, they can do so much now-a-days with those kinds of things. They Can Fix That."
I say: "Yes, they can, we live in a wonderful time."
I really want to say: "I want to cry, do you know how exhausted I am. How long it will take to get there? Do you know how hard I work to make sure he's getting enough to eat so that he won't need a feeding tube. Do you know the Drs think he has Stickler Syndrome. Do you know he may have low level hearing loss, he's subject to retinal detachment and arthritis at an early age? Do you know I have to wonder every day if he's hearing the same things I am and seeing things the way I see them? Do you know that he'll need speech therapy and occupational therapy for years? Do you know he'll have to have medical evaluations for his whole life? Do you know that I worry about my grandchildren who aren't even born yet? Do you know that I worry about him meeting a woman that will love him and want to have his children, even though they might have clefts. Do you know how I worry?"