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.
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Since you spent so much time with her, you are best suited to say how much she could understand and see, sense and hear. Doctors can sometimes, I feel, only speak in generalities.
ReplyDeleteI feel it's a blessing to be able to recognize a response and to appreciate it.
Absolutely .... it was such a pleasure to be able to communicate with her . Later on , i found new ways to amuse her and could understand more of her body language ( most of it was her breathing pattern )...
ReplyDeleteyou are such a dedicated and loving mom, Mithi was indeed lucky to have you as a mother and you were lucky to have her in your life, brief as it was.
ReplyDeleteGod Bless