Medically Complex and the Stories of Our Lives

I have spent the past few months either care giving for my sick four year old, or being sick myself, and thus living in a continuum of burn out.  A multitude of house projects still left unchecked on my mental list of, "things a good housewife would do."  An overwhelming amount of money owed to doctors, thanks to drastic changes in health care that no longer directly support the medically complex children, leading to constant dreams where I'm drowning over and over and there's no one on the planet to rescue me.  Living in a constant fear of what medicines or treatments or hospitalizations we will have to discontinue because of exorbitant medical costs.  These are real issues with real emotions and no real answers for us parents of medically complex children. I have melded myself to several different facebook groups; Mommies of Special Needs Kids and the Noonan Syndrome Family and Mom's of Tubies type of groups.  But these lovely people behind keyboards are j