today i clicked mithi

mithi got up late today n it was a foggy morning..................tough for her cuz after her brushing washing sponging routine,when she is out of the blanket for that while, she needs that daily dose of sunshine.............now a days in winters, i sometimes sing for her........mithi ke liye dhoop aayi..........she smiles when she is in mood..........i say .....aa gayi...aa gayi...dhoop aa gayi......she knows what i am saying....today, that was the time i decided to click her pics, just before her breakfast...................after the feeding , she looks so tired n angry sometimes..........eating is painful for her........sometimes food rising up into her nose, coughing n then she starts getting angry n aaawing me to stop.........sometimes after a sip of water i can continue, n sometimes i have to stop feeding her........she may choke if i force her to.................
don't worry...........it is a routine for me n now i do it almost mechanichally ...............since i know human anatomy a bit.....ENT and all.........i know when to stop..........and moreover she knows it too,how to tell me when she doesn't want to eat.........gurgling out the food, or just aaawing me [much like scolding me],...........interestingly,yesterday when she was aaaaawing n gurgling,refusing to eat.........i just wiped her mouth n said now mama will stop putting more food in your mouth n don't cry now.......but she kept aaawing............then i said....mama will put one more spoonful in your mouth[ i said , chup ho ja mithi nahi to mama ek chammach aur khila degi]......she stopped crying at once.............she understands...............this i have learnt through constant observation........this is what i want to tell so many people, it is not that tough to connect with your child.....a small effort gives you big rewards.......hope my own mom could understand this......and another mother whose daughter was suffering in pain, when a honey bee had entered her ear n was rotting inside for over a month.........and the mother was busy with her daily bhagwan ki puja routine.........if only we could see things with more clarity.......

Mithi at the Age of 8 Months

why i need to write about my life with mithi

it's not that i always wanted to tell everybody about our lives together..it's not an extraordinary life at all..it's just that life has given us a challenge and we are doing what we think is right and of course what our resources allow us to....i mean to say, when resources are limited in the material sense, that's visible, but when our intellectual resource is limiting....it lames us, and it blinds us too.
here i am trying to tell, how we are trying to overcome those limitations of life, which become all the more profound when life puts up challenges before you............one after the other........

many times people have told me that i take very good care of mithi,and also that, not many parents can do that.....this makes me wonder,is it so uncommon to take good care of a useless offspring [believe me i am choking right now,she is not useless for me at all, but nobody seems to understand] a vegetable child, as many people call her.................the truth for me is.........she is my daughter and she loves me...what more a mother can ask for.
all the doctors we have seen for her, have tried to counsel me, though sometimes reluctantly, to detach myself from her, some other people too have advised me so............i could not..........mostly because i didn't feel the need to do so.

how could i be away from her when she needed me,how could i ignore when she needed all that nursing and caring.............up to the age of two years, when she was such an adorable and loving child, she had given me so much of joy ,happiness and above all, contentment of being a mother, that detachment was completely out of question...............i had to learn to deal with it..........it was not easy, i was in denial of the situation for a short period of time....asking myself again and again,what wrong had i done to deserve this....and she might have done to suffer like that.

i was strong enough to learn fast, mithi always cooperated in whatever way she could, as i saw that even when she could not talk,she could under stand me, and though her reflexes were not under her control, she could connect with me in a strange manner. but somewhere i think, i could not convince this to the people around me, i never tried though, i am an absolute eccentric for them.....at the same time i feel very lucky to have a husband like arvind [ i am choking again, strange...] who is completely in tune with my eccentricity. what more i need to say about him.
he loves mithi so much that he is a different person now, on an emotional level i know he is not mentally as strong as me.........he cannot see her in pain and sometimes does not want to see her when she is in extreme physical discomfort, but he compensates this weakness in other ways.........and worth telling, he is learning to face all this pain faster than me now....when i get to a low, he takes over.

still i have not made it clear why i want to write all this.........i have really seen many such children being neglected by their parents or other people...i know most of the time it is unintentional..i was talking of intellectual limitations [ i need a better term for this] which can make us lame .....and blind.....insensitive..........................i had to overcome all this too.................it is very easy to fall prey to self pity.......the next step is .....we try to escape from the situation and do something else to distract [this is when most of the females become cleanliness freaks,upto the level of an obsessive compulsive disorder] , i also started keepin myself busy in cleaning , cooking[it got so obsessive that i started cooking huge amounts of food which evetually got wasted] and other mechanical things to keep my mind away from this.....................at that time i was in a small town in jharkhand, dhanbad, where my husband was posted. ..........as no good advice of any kind was available in that place,i had to analise myself, what i am doing..............doing all this after mithi's requirements ,was physically very demanding and i became very irritable too [though i had a very good full time maid then]...........soon i understood where my energies need to be directed.....................that is what i want to tell everybody.........it's all about making peace with the situation............otherwise it goes on into a whirwind of sorts.............i have seen people becoming insane.

i want to write more about it and would do it soon as i get some more time...mithi has got up.......got to go.

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.

mithi is happy with color therapy...me too

i always knew that green is the master healer,don't know how ....but it was very clear to me........
when i was younger pink and white were my favorite colors...green was okay but not a favored one......green started coming into my life later...gradually ....but strongly ..........how could i be away from this color being the eternal fighter that i am. i have been always sure of the fact that i cannot remain depressed for long..however deep the depression may be.....after a point it gets saturated for me and i bounce back.........more importantly, i can never be cribbing and depressed in front of others....want to have a dignified stature in whatever circumstance...........to hold my head high, i always stand up to face every thing .....come what may ..............is that easy?????????

i am sure this tendency of mine may have propelled me to choose green almost all the time.........wearing green and eating greens like a maniac......not to forget my love for growing house plants...and tending to them...................all of it keeps me energized in action and grounded in thoughts.

so i wanted to write about how i had been trying to get to rochie for an advice regarding mithi and after a long time when i finally decided to mail her.....she replied almost immediately.......within minuets.................hi sangeeta,tell na sweetheart...what is wrong with your daughter............i knew here comes the solution to this sweetheart....i started melting like honey.........oh yes it felt really good to be called sweetheart.

the angel that she is ..not only she adviced for mithi.........she could feel clearly what i need as a mother and caretaker..........adviced me too accordingly....i just love her for this..........

i want to tell rochie a very curiousity inducing coincidence here.............i have been a research scholar in the field of microbial biotechnology and was working on the pigments of certain cyanobacteria..........these pigments were blue-green and violet-indigo-purple colored and i studied about how they can be used as potential antioxidants.........as suplements or otherwise.......
now when rochie told me to use voilet,indigo and purple for mithi as it calms the nerves...i immediately started thinking in what ways i can use this color for her..........after a little pondering...i bought her clips and rubberband for her beautiful hair ...............and decided to knit a stole for her in this color........tapti brings the wool and voila... the stole is ready...mithi happy....

side by side i thought it will be better to to include beetroot, black carrots and black grapes in her diet as they have this color...............it was so wonderful...as i added these ........mithi started taking her normal diet...which she wasn't taking since 3-4 months..........i was delighted...touchwood............though for me.........it is so perplexing......... how the colors which were the focus of my
research[which i could not complete] have come again in my life....for the better.i hope........fingers crossed.

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.