Finding Her Voice

Last weekend I was fortunate enough to witness a true miracle. I’ve written about Natalie before. She is my dear friend Jill’s daughter. She is a bright, beautiful seven year old. And she is a prisoner in her body. Born severely effected by cerebral palsy, she has the physical abilities of about a two month old. Her little body is horribly uncooperative. Her muscles are stiff and do not take direction from their owner. She is fed through a g-tube, cannot take care of her own bodily functions, cannot speak, has difficulty even holding her head up. She does breath on her own but even this is often compromised by clogged lungs and frequent choking. She does smile…gorgeously. And expresses disappointment with a lower lip that tells it all. She also has a brilliant sense of humor and catches on when her younger brother Sam is being silly. She catches adult conversation and you can tell she understands what is going on, I’m sure with more awareness than most seven year olds have.

Over the last few years her world of communication was forwarded when she gained the ability to answer yes or no questions by following with her eyes her choice: no ( a closed left hand of the petitioner moving to the left) or yes (a hand with a Y in sign language moved to the right). That has been the extent of her ability to communicate. Several months ago Jill began working out an alphabet with her where she looked at different parts of Jill's body for a letter (L was leg, f was forehead, etc.) Natalie spelled full sentences right off the bat. She even told on her father and delighted in spelling a word she wasn't supposed to. Everyone knew she was sharp but at six years old to be able to spell the way she was...well it just said a lot. But this kind of spelling is laborious, not always easy to do and limited to just those people who know the alphabet and can spend time with her learning how to read her queues. In other words, it was pretty limited and frustrating. So these were her only forms of communication along with facial queues: a smile or a pout. Natalie is the living definition of what it means to be “trapped in one’s body.” Much like a stroke victim who is aware but can’t communicate. That is Natalie’s world. Her family, who loves and delights in her, live with the frustration of trying to figure out what Natalie is expressing. And the frustration that Natalie lives with of having things to say but no way to say them…well I cannot imagine it what that’s like for her.

Last Thursday, Jill, and her father Larry opened up the box containing the leased computer that will give Natalie her voice. This week is a trial, with an appointment on Friday at Children’s Hospital to determine the effectiveness of this tool for Natalie. The result of which will determine when insurance will help cover a bulk of the cost of this very expensive equipment (Over $20,000). What is a voice worth? This is like on of those American Express commercials: “A pound of butter: three dollars. A country club membership: then thousand dollars. The voice of a child: priceless.

Natalie is learning to move her eyes around the computer screen that, after calibrated, can detect where she is looking and what she is choosing. Then it puts the words together and she looks at a certain place and a voice strings together the words and phrases she has selected. OK, I was brave when doing this with her in person, but writing about it is making me cry. It’s overwhelming to know what this will mean to Natalie. To her mother and grandparents. To her brother. To the people whose lives she will touch. Her first sentences were “I want water.” Though she doesn’t drink orally, Jill provides water. And they smile at each other. Because, even though it’s a demand, it’s a message. And it is heard. When I was little I was fascinated with the story of Helen Keller (in fact I bought a book of her story to share with Natalie). Helen’s first communicated word was water.

Pray that the session on Friday goes well and the decision is to go ahead and get a computer covered for Natalie. Even with insurance coverage there will still be a balance to pay on a computer. Let’s use the power of prayer to reveal sources for that balance (grants, doners, etc.) to help give Natalie a voice.

-J

PS I will post a picture I have of Natalie with her screen just as soon as I can get it off my camera. In the meantime, this is a picture of Natalie playing dress up with me. What a character!