Monday, April 4, 2011

Speak Now

Joe is waiting to talk. He often touches another person's lips to indicate "I want to talk too." He knows other people form words with their lips; he doesn't understand why the muscles in his mouth and jaw are so weak, they can't sustain speech. Every month I call our local senator's office and remind him about the amendment to NYS Medicaid law, to allow Joe to have the prescribed supplement which will strengthen his muscles and let him form words with his lips, like everyone else. The bill is waiting approval to be put on the agenda so the committee can discuss it. Really? Are we kidding? Must call more senators, or see if PA will be more accepting of children like Joe. How long will he have to wait? This is a rare photo of Joe actually looking at the camera. Joe will do things for Maggie he won't do for anyone else, even his twin. She just says, "Joe, look," and he does.

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