How do you envision your SN child as a grown up? Through the patience and hard work you are doing now raising your SN child, will they have a future where they will be able to get a job, live on their own, etc. or will they always need some type of care? If it's the latter, are you having to take steps now to set up future care for them?

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I think that DS will go on to be some type of engineer, probably structual. I believe that he can live on his own, marry if he wants to but I know that if he needs to live with me that will be fine. I figure if it comes to that I will build a MIL cottage onto the house and he can live there so he has independence but still someone to check that the stove is off.

I pray that medicine keeps up with Tommy's medical needs and he can live long enough to be an adult! I want to see him married with kids and leading a happy normal life, even with a surgially repaired heart.

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There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
My Blog:Musings of a Heart Family

I'm optimistic about DS. He needs an environment that isn't about politics and social structure, something where he can be creative but not alone.

He's actually trying to figure out vaccines and how cancers grow. At 8 years old!

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I have a lot of concerns about my son being able to live/function independently. He's smart enough, but he has such a hard time getting around. I still do a lot of things for him that I wouldn't do for a much younger child. He needs a lot of modifications in the house in order to take some responsibility for himself. Sometimes I lie awake wondering about if he will be able to live alone.