Shishur Sevay

Ganga wants to dance.  Writing about Ganga is a strange experience because she cannot speak, and yet she seems to tell us so much.  As I've written before, when she came to us in February 2007 she could not lift her head or move her arms.  She did not make any sounds except crying.  Her only form of communication, other than crying, was pointing with her eyes, and her very expressive face.  She had less body tone than a newborn.  I've blogged about her befor, when she learned to use her hands to turn a page, when she and the others started school.

Ganga sits in on the dance classes.  She insists, arches her back and screams if the girls try to go upstairs without her.  She watches intently.  She watches the teacher intently.  She adores him and talks to him as he works.  He adores her.

Ganga almost always wakes with a smile on her face.  But one morning a couple of weeks ago, the morning after dance class, she slept later than usual, and when she woke she stared at me, looked around, and then her face got sadder and sadder, and she began to cry.  I asked her if she had been dreaming of dancing and she kicked her legs and waved her arms (affimative) and I talked to her about dancing in the sky, and flying, and everyone looking at her dancing…. and then it was a dream, and here she was.  She listened… rapt… and I told her she would dance one day, that we would find a way for her to dance.  She glowed, and then her eyes pointed to my cup of coffee and we had our morning coffee together before going off to school.

I sent a note to school that Ganga wants to dance, but they didn't respond.  They never do — an ongoing battle I have with them.  My children can't tell me what they do in school.  I want to know.  I want some hint, some words we can use later in the day to create some continuity.  But at home, everyone was/is aware of how Ganga feels about dance and our teacher.  If she gets sleepy in class here the teacher tells her the dance teacher is coming and she wakes up immediately (I hate when they do this.)  Ganga now watches music and dance DVDs and VCDs the way she used to watch Damu and Charlie Chaplin.

Ganga tends to be physically lazy.  But now I've told her she has to work hard to get her arms working and she has made real advances in the last several weeks. 

Our dance teacher dreams of her dancing.   I actually dreamed one night she was dancing with him.  He was able to hold her up in the air and spin her because her body was limp.  She spun so fast she became almost invisible, like when a fan or airplane propellar spins and then slowed down and she could be seen again spinning….  Then in the dream the teacher told me she was very good.  In the morning I told her I'd dreamed she could dance.

On a practical level I'm thinking about a light weight "standing box" on swivels, open on the sides so her sari will be seen, but holding her up so she only has to use her arms and head, and eyes, and incredible smile.  I imagine the girls using her in the dance by moving the frame.  We will start with Ganga, for this is her passion, but these days we have all four watching, and will find ways for them to dance too.

Ganga's force of will helped get them all to school.  That force of will may have them all dancing. 

Rani, Bornali, and Sonali

Bornali and Ganga are like a pair… both with CP, competitive with each other, one outgoing, the other shy.  Bornali is the better student.  She is obedient, learns her lessons, quietly, and watches everything going on.  Today I showed the staff how she differentiates red and blue, can choose shoe or pen… many objects.  I have the massis doing more play with the childen and they love it — kids and staff.  Bornali loves to follow Ganga, be where she is, do what she does.  She is much more physically able than Ganga and may eventually walk.  We are working at socializing her more.  We actually try to get her to watch TV.

Rani is also communicating more.  At school she is well behaved, unless she is in a bad mood, but then she just is quiet and moody.  Her behavior is good, which is amazing because for a long time she was our most difficult.  She has severe encephalopathy, but sometimes she seems so present, not just to me — to all of us.  She and I communicate by "vocalizing" and tapping our hands over our mouths.. kids' play.  We sing to each other.  It feels so good when we connect.  She is intriguing.

Sonali, with her minimal sight (light and large images only) is our youngest, and most playful.  She is so determined, climbs on everything she cqn, is now able to sit on her own and pull heself up.  The teaches at school adore her. The afternoon I met her first, and had to decide (when i ended up saying i'll take any child you give me), I held her with her head just under my chin, wondering if she was conscious, if she even knew she was being held, and she squirmed a bit — seemed to know she was being held — and that's when I thought to myself, "Four sleepy babies, how much work can that be?"

We brought seven girls home that evening, including the four handicapped girls.  We were totally unprepared!  We had no diapers!  We had nothing!  Those were wild days, but it was wonderful to have them all — still wonderful, for all of us.  As I told the big girls recently, "They are just like us, but they can't tell us what they think or want."  The big girls love having the little ones in their dance and song classes.  They want them to dance, they want to dance with them.  Everyone wants to dance, together.  This is our home; this is Shishur Sevay; this is our family — of course, with their Didis and Dada in America.

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.