In the spirit of the disability rights group Not Dead Yet's "What the Disability Rights Movement Wants: Eight things that need to happen to safeguard against non-voluntary euthanasia in the U.S.,"
here are eight things that parents of severely ill or disabled children -- any parents, really -- require from doctors to truly trust that their loved ones are getting appropriate care.
Tell us the truth, and if you don't know what it is, tell us that, too. Don't tell us what you think we want to hear, or what will make us decide things your way.
An appreciation of our child as something more than a cost-effectiveness problem
Healthy or ill, rallying or near death, our child is a unique individual with strengths and gifts you may never know about -- not just a bag of organs using up a bed.
Cooperation, not combat
Doctors and hospitals should be fighting with us against what's ailing our child, not against us to circumvent our parenting rights: Be our ally, not our enemy.
More options, not fewer
If we seek alternative treatments, it's not because we're fools or dreamers, but because you've stopped offering creative and hope-inspiring options; show us you're not tied down by the-way-it's-always-done, and we'll listen.
Respect for the power of love
Our love for our child endures past diagnosis, past illness, past hospitalization and treatment and futility and brain death -- our love for our child has no limits. Don't be surprised if we put more faith in that love than in you.
An understanding of the preciousness of one more hour, one more day
Our memories may soon be all we have of our beloved child. We want as many as we can get. One more birthday, one more book read together, one more smile -- these are not small things.
A little respect
We may not have gone to medical school, but we're the world's #1 expert on our child. Treat us like a peer, not like a roadblock in your way.
Get this: You could be wrong
Doctors make mistakes. Frequently. Not little mistakes. Big ones. Chances are, we've had doctors underestimate, misinterpret, or mistreat our children before. We're still willing to listen and work with you. But take off that Superman cape before you talk to us.