i learnt a new thing today

as i sit here to write ...mithi wants to talk to me .....i am telling her that mama wants to write about her.......i pull her wheel chair towards me and kiss her in between writing this...............it works so well...she is immediately satisfied and i see the 'at ease' expression on her face......this is what she needs...i bit of attention when she wants it......and i have to understand it.........continuous observation helps me doing it most of the time ....as i can't be so perfect that i get to understand all the time......i try and keep an eye on her all the time and most importantely in her case.....her breathing also indicates her discomfort.
her breathing is a bit wheezy as her lungs are pushed to one side, this is because her spine is bending slowly , laterally to her right side..........so her breathing is at a comfortable rhythm when she is at ease.but whenever she pees or soiles her sheets,she becomes uncomfortable and her breathing becomes a bit harried and i know she is calling me.........as soon i uncover her to check or to change the sheets..........she takes a 'sigh of relief'...very distinctly.........and then again,that 'at ease' expression comes back to her face......................................it is very very hectic for me throughout the day changing her sheets around 10-12 times daily.........i surely get tired but i never get irritated on her ,and i am telling this from my heart........what keeps me going is her relieved expression and every time i kiss her or talk to her she connects to me in such a way i cannot express in words, i can only feel it and am really happy that she is my daughter...........


whenever somebody asks me to try for another child..........i always tell them that mithi is giving me all the happiness a child can give to her parents..................okay.... there are problems too but that could have been otherwise too....any body can get ill or confined at any stage of life.....somebody has to take care.....so what if it is me...............she gives me so much in return........

there are things which are really painful....the helplessness..........sometimes not being able to understand her needs or ..........waching her when she has the fits or arhythmic breathing or heart arhythmia...and the likes.........but everything is not in our hands...and we have to accept life as it comes.




i wanted to tell what i learnt today.........yesterday night to be precise............some times during her sleep, her breathing becomes disturbed. so much so that she stops breathing for a while..........when it is mild ,just holding her hands and caressing her forehead etc comforts her to sleep...........and when it is violent she stops breathing for a while ,chest massage and mild chest thumping brings her back to a jerky inhalation. we have to be vigilant always ........but it usually happens frequentely during the night.....disturbing both her and mine sleep..........
what happened yesterdayat bed time,that when a mild fit came during her sleep, i just held her hand with one hand of mine and with the other hand caressed her forehead for a while and whispered into her ears that ..........'mithi so rahi hai....mithi ko bahut neend aa rahi hai.........mithi ko neend me bahut maza aa raha hai'...i kept repeating as i saw her getting comfortable.....................and to my surprise she slept peacefully throughout the night..................imagine what precious thing i learnt today.

rochie.... is that color therapy??? i don't know but i have learnt many such things with her.