Coming to terms with disability

  • 2002 ,31st Jan when I turned 30 Manavi took life . Just a night before I had disposed off my files from work and requested my   supportive team to help manage the production deadlines ...did I once think I am going to give up work and raise my daughter , an emphatic no ! I loved my work and giving birth to a baby seemed a natural progression .

    Little did I know what the sequence of events will roll out . At  3 months ,2.6 kgs, failure to thrive, delayed milestones , inconsolable crying,poor weight gain , no gaze fixing and Dr Meharban Singh minced no words and no time in telling us "your daughter has mental retardation "  She still went by the name "Baby Ruchika"  ... ...if ever there a feeling of blanking out  , it was that moment . I could not fathom anything . All I knew of   mental retardation was what Hindi cinema had portrayed in the movies . One particular sentence of Dr Singh I held as my beacon light  ". ... Brain is  the only organ which grows till 5 years after birth and please stimulate the brain and help it assimilate as much and don't let go of common sense ".

    I am skipping a lot here and coming to the reason why I am writing this post .

    Manavi's  journey of survival , growth and  development has been nothing short of a discovery channel to me,  both with regard to  human mind and an internal spirit  of what I  understand as "Life".

    I choose to share some of our little victories and daily dalliance not to convey this is all what we do nor is it restricted to the happy successful accomplishments  nor am I besotted by her nor eulogizing disability . I am only helping a young child lead a life and be able to express herself her thoughts and needs through "me as a communication partner ".

    ....these little slivers of our daily life can perhaps show you what a strong person our children can be much it takes from an individual like Manavi wanting to be part of the same universe and us trying really hard  to bring some semblance of life ...a life which deserves in the least dignity and respect disability notwithstanding .

    Yes things could be different for mant many families  if the societal institutions  at large recognized neuro diversity as it's own creation rather than abhor anything other than a neuro  typical production .

    We live in very trying and challenging times given terrorism , misogyny , casteism , social injustice , natural resource wars , gender inequality and much more .... The human civilization can evolve better if we let go of some invisible barriers and understand,  to be weak is not a sign of failure nor to be strong mean success

    Kindness , gentility , acceptance tolerance are virtues which will help us evolve far better and more holisticaly .

    So friends do excuse the short notes we bear about our selves and our children they are only little glimpses of the world we want to share ,yes it does reflect a very different kind of parenting and childhood  but the love anyone has for his or her child is like any other in the world .


    Ruchika Sethi

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