Ganga turned a page today, literally. We have been unable to find anything that motivates her enough to struggle to use her hands and arms. She is quite willing to have us move her fingers to a button she presses to make a light go on, or to turn on the music from a toy. But her heart isn't in it. In my head I imagine her whispering to me, "Mom, this is so stupid!"
About a month ago a special ed teacher started. I watched as she tried to get Ganga to hold a spoon to feed a doll. I thought to myself, "Ganga doesn't care about feeding a doll." Actually she doesn't care about feeding herself. She lacks the "I'll do it myself" drive.
Ganga loves serious Bengali movies and Charlie Chaplin. She hates Barney. Last week I took her with me in the car for some errands. She was fascinated by the vehicles, which I named for her, gharie (car), bus, taxi, lorry (truck). At a traffic stop a hawker came by carrying balloons and toys with whirling lights, but she paid no attention to him. She is too serious for toys. She cries when we put on Barney for the other little ones. But she has to learn to share too.
This morning I brought her to my office area in her chair, and I showed her a big picture book of India, and she was totally engrossed. She reached out to touch the pictures. She tried to stroke Buddha's face! We went through the whole book, page by page, and then I just left it open in front of her, hoping now to get a few moments at the computer. Then I saw Ganga struggle and struggle to get her fingers to grasp and turn the page of the book. On the fourth try the page turned. It was a beginning.
I know a young woman who competes in wheelchair racing internationally. She said to me once that her mother made her work at what she wanted, and she is grateful for that. But I also know her drive, what pushed her, and still pushes her to overcome obstacles.
When Ganga first came to us she could not hold her head up. We had to support her as you do with a newborn. Both her arms just hung down, with no tone, no finger grasp. I used to wonder if she even KNEW that she had arms and hands. Then one evening we had the barber come to trim hair. Ganga hated this! While I tried to hold her still she screamed and flung her arms! I cheered for her! Ganga found her arms. Today she found a reason to use them, aside from fighting off barbers.
It all happens in small steps, but the processes are really the same for each of us. We fight harder against obstacles when we care the most. Sometimes we find strength we didn't even know we had… like Ganga's arms and hands, and now her reason to use them.
May 06, 2009 @ 08:34:02
I am always impressed with how beautifully you right Michelle – and this entry was a surprise piece of inspiration for me. Keep up the good work “Mummy”.