I've been trying to find a good video...or writings...of 'what its like'. We are newly diagnosed, so I am getting this question all the time - many friends and family have an expectation which is totally incorrect (it'll get stable soon, etc.). I thought maybe a good idea to start a thread here to collect some thoughts that could be shared. I have a hard time putting things down in words. Simply, I would say that on the one hand, it takes a lot of work - testing, feeding, checking at night, etc. From a deeper perspective, I feel very down when I think 10 or 20 years down the road - nasty complications - whereas pre-diagnosis, I was very hopeful and excited about the future. Often times its overwhelming to look at the child you love so deeply and imagine future complications.