Medically Complex and the Stories of Our Lives

I have never wanted to be a superhero. Superman wears a cape and red underwear to perform his civic duties. Batman wears a mask and special gloves to save the world. Wonder Woman wears a silk bikini and magic bracelets to ward off the bad guys.  Spiderman wears pajamas for his strength, and on and on and on it goes.  Superheroes. Beings that always win the battle, no matter what.  I've never been a fan of superheroes, and now in my forties, even less. Why don't I like superheroes? I do not like superheroes because there are no battle wounds, no life long scars, no emotional responses.  No brokenness.  I cannot relate to such a superficial, one dimensional reality. I would love to wake up one day and be "over it.'  To put the years of pain, fear, and trauma as it relates to my little son with Noonan Syndrome completely to rest--to find that reset button, or magic wand.  Instead the twists and turns of my journey keep dragging my toes into deep, ...

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...