This is Amos' story and I play the role of narrator, mother, fighter. I'm not sure I'm winning. I'm fighting though, I'm fighting for the most brilliant cause that has ever been and I doubt any parent would disagree. A child, my child, Amos, my Amos. He may have no voice of his own but he has a right to services that BCBS promises are available for their patients. The battle is fought over what services are deemed "necessary." I can't help but think of the old adage my clever father instilled in my brother and me: Is it a need or a want? As much as this seemingly rhetorical question annoyed me as a child, I have found myself echoing the same verbiage to my own four children.
It's tricky though, isn't it? Do you need a car? I may say yes, but do I really need it for my survival? No. Do you need water? Yes, absolutely yes. Do you need a place to live? Maybe, but maybe not as you could stay with friends. Do you need to talk? No. No, you don't need to talk says BCBS. Amos can gesture and vocalize to get what he needs, they say, at least for his most basic needs. He can. He can walk in the pantry and bring me a box of Cheerios and steal my drink and thus, his needs are met. He can say "Mama" and "wa-wa." This is the path our beloved BCBS of NC has chosen to offer and it is not a pleasurable walk in the woods, unless you long to be Hansel or Gretel. I, however, refuse to follow this ridiculous trail of breadcrumbs.
I'm fighting the good fight. I'm right, I know I am. Does anyone "need" an MRI or genetic testing or speech therapy? According to BCBS, the answer is no. It is no, over and over again, I am told no. I'm a mother though and mothers don't take no for an answer and this mother wants more than Amos needs evidently and if that's wrong, then take away my license to parent. While he may not need the services we request for his very survival, I say to BCBS, come spend a day with us and fall in love with Amos and then tell me that his gestures and his vocalizations are enough. I dare you, BCBS. Tell my little boy that he should just talk with his hands and that a voice from a computer will never be his own because you say he doesn't need it. Someday he will tell his own story and I wonder which character you will be in his tale.
Choose wisely, my friend, choose wisely.