Her bright little face breaks into a grin as I enter the room, set down my bag and greet her. This little one is a light-of-my-life addition to my day and always brightens it when I am her nurse.
Maddie* is petite, pretty and precocious, and she makes no apologies for it. A typical child, Maddie is trying out the word “no” as frequently as an opportunity allows, which is just about every time she is asked a question. She is typical in every other way, but something in her body is broken. Born with a hereditary neuromuscular disease, she will never walk or dance or drive a car—all the normal things that a precocious young female looks forward to.
She lives most of her life in bed or sitting up in a recliner, and she’s permanently attached to and dependent on a ventilator that breathes for her. Despite her limitations, she is a bright and cheerful child—with certainly the sunniest personality I have ever seen. Her personality shimmers magnanimously and with a sparkling streak of mischief. She can be coy when she wants something, she can tease beyond distraction and her sophistication in complex interpersonal skills is startling.
A child with a serious illness doesn’t start out life the way others do. If you are a handicapped child, you may begin your life and live much of the first year in the hospital. Hospitalization means that all kinds of medical personnel can enter your room without permission, they touch you in some ways that are hurtful, they perform medical procedures on your body—leaving you with nothing to say about it and no way to refuse or stop it. Special children like Maddie live with constant invasiveness and intrusions into their sovereignty. And sovereignty is the glue of the soul. Maddie has navigated her passage into life thus far fairly well, but she now uses every opportunity to try out her new attempt at autonomy—loudly proclaiming “no.”
“No,” unfortunately, will rarely be honored because a particular treatment or procedure might be medically essential for a child who is handicapped or ill. Refusals and simple childhood desires may conflict with medical necessities and are regularly overridden in favor of health and medical concerns. In a normal situation involving a normal person, this constant uninvited and unanticipated intrusion would be considered assault. In an adult, it would be a prosecutable offense.