Erin,
As a grown-up who was once the sick kid, I can really empathyse...I do not know how much my parents felt or were involved in my disease or illness when I was as a child (obviously when I was a baby it was all them) but as a teen they let go of it and by the time I was 16 there was no one to hold my hand or to walk me though stuff..at 18 when I had my k pouch done they were just friendly visitors and nothing more.
My dad blamed me a lot for my disease and used my diet or lifestyle as a scapegoat for why I was still sick. My mom blamed me for distroying her life.
the bottom line is that some parents cannot face their children's illness or deal with it...they do their level best when we are young and not in control but once we are up and running with it they drop the ball.
For some it is guilt turned inwards 'what have I done to make my child this way', for others it is selfishness, 'why am I being punished, what did I do to deserve this', forgetting that it is the child who is suffering in their body and not the parent...some it is self centeredness and we are just interupting their plans.
Not many parents are truely disinterested but many are way over their heads on this one. They cannot fathom having to deal with the disease and all of its gory details and requirements...and some are just bloody oblivious.
It is unfair to add unsensitive parents to the list of horrors that this disease throws at you but sometime you just have to pick your own family. Friends who understand, people who have suffered or gone through the same pains...and sometimes you just need to parent yourself and forget about the others who couldn't give a dime about you.
Hope that this helps
Sharon