I have a brother with a disorder known as "Four P Minus" or Wolf-Hirschhorn syndrome.
I have a lot of experience (over 20 years) in caring for and living with special needs children, and the experiences that go with them.
Trachs (surgical procedure to put breathing aparatus into the Trachea)
Seizures -- Grand Mal and Petit Mal
Physical and mental limitations
Being "that retarded kid's sister"
frequent hospital visits
wheelchair and walker issues
problems getting disability benefits
giving up your life to take care of someone else
the "small" accomplishments that mean so much
Seriously, there is so much about this. If you want to know anything, just ask.