Stresses of life

It's amazing how the simple things in life have changed in this house.  Yes Adam runs around like any other 2 year old, yes he's full of beans and chatting up a storm and looks normal, yet there I am having to research all his food, if he needs oxygen to fly, give him medication at least 4 times a day, make sure he isn't getting clots in his legs, checking to make sure he doesn't get swollen as that's a sign of heart failure, slowing him down when he starts to cough.... It's a never ending cycle of life in this house.  I don't know what will happen for Pre School in a year as he will need at least one type of medication while he is there.  It's stressful to think that his life is going to be different all because of the way he was born.  He looks so amazing.  I am truly thankful that it is today as 20 years ago he may live 3 years as there were no medications available for his disease.  Now there is so much more.  Family life here is really tough, I've moved from all friends and family and am here alone with Adam and my husband who is never really around.  Things are really rough there too so I'm not sure what direction to go in.  All I know is that I will do whatever I can to make sure that my son grows up strong and is a contributing part of society.