the big question

but the question was......how does she feel........i'll tell what is my perception about it........since she can't express...
she was all of 2yrs when this syndrome struck her and gradually became immobile and limp in the following year.................while trying everything on earth, i took my own time to come to terms with it and to accept my fate, if you call it so.........my connection grew stronger with her as more time and attention was needed to meet her demanding routine.......... as i knew her intelligence is not affected in this particular syndrome......her understanding towards her surroundings might have grown with time........ here comes another problem...........her eyesight is also blurred and her eye movements are not under her control............her worldview blurred already, minimizing her exposure.
another window to the world is her ears..........because she could not respond to any stimuli,nobody except me and arvind bothered to talk to her and connect to her, the only other person she recognized was our maid,purnima,who stayed with her the whole day.............but when purnima left after being with her for 5 years,she didn't miss her and more so when she came back after just two months, she didn't even recognize her...............my perception..she has a short term memory..........may be wrong but i had seen this earlier when i discontinued breastfeeding her when she was 20 months old, and that time too she didn't miss breastfeeding,evenwhen her syndrome was not diagnosed then.................when i told this suspicion of mine to a docter...he was just amused...or so i think.

there are so many things which i keep thinking and keep getting headaches.........but i have come to a conclusion that she has seen the world through my eyes and her world is this small ..........she is only connected to me and arvind only and seeks our attention only...............knows what i tell her and gets happy when i am able to amuse her.............any which way.......

want to write more about it .......some other time.

living with fredericks ataxia

a friend of mine asked me one day........what mithi might be thinking all day and it must be very painful for her...being on the wheelchair the whole day.....................since then i have been thinking what to say......how a third person can understand what we all are doing to survive the tough time.how a mother feels helpless and overcoming this helplessness she is determined to keep the daughter happy and contented through whatever lifespan she has................and YES i found more than one ways to be happy with her ......she reciprocates my efforts...........she gives me all the happiness a child can give to her parent...........she talks to me in her own special language and smiles at me when amused but ........to understand her language one needs to connect with her..........don't ever ask what effort is needed...........it is something to be felt...not to be seen with the eyes.