Editor’s Note : How a ‘special’ child can be a life turning event, hear it in the words of our colleague. And how his spouse makes it a life’s cause is to be seen to be believed.
I, Dr. Shailesh Khakhar & my wife, Manisha were really glad when approached by Dr. Hemant Agrawal to give an article In Image about life with our special child Deep.
Deep was born to Manisha 18 years back (1991) , the day on which Mumbai was submerged with a continuous downpour. It was otherwise a FTND ; only that she did not feel fetal movements , had fallen from a scooter in 2nd month of pregnancy but with no untoward clinical or USG findings.
Deep was born with hypotonia, unable to hold head; poor cry & mild peripheral cyanosis, making us feel something amiss with our new born. On that fateful day we were unable to get a Paediatrician even because of water logging in the city.
Later our friend & Paediatrician Dr. Manoj Sangoi took us to Dr. Vrajesh Udani at Hinduja where my child was diagnosed with M.R. (Mental Retardation). Our world fell apart on hearing the diagnosis; we were shattered & numb; went into denial mode, unable to accept. I was full of negativity & felt alienated to the surroundings, not ready to accept – “how it could have happened to us?” Our next few months went into counselling (psychological) & investigations on Deep including MRI, hearing test like BERA, genetic test karyotype which all turned out normal. Even samples were sent to USA for certain Aminoacid tests to rule out metabolic disorders – no exact cause could be pinpointed for Deep’s CNS affection.
Deep’s milestones were delayed ; we started with physiotherapy thrice a week at Hinduja Hospital.
I was jealous of my friends & relative’s children growing normally & going to normal school ; where as my child was to be taken for therapies & IQ assessment & when I realized that he would not be able to go to normal school , it was difficult for me to accept !
It took me few years before I could come to terms & take control of reality, “Yes I have to live with it & I cannot ruin my & others life around by being ignorant.” I used to avoid taking DEEP to social gatherings previously, but slowly charm of his innocence & cuteness, positive atmosphere in family (& friends) & positive attitude of my wife - all helped a lot to come back to the society in which I felt , “Yes I am part of it.”
Considering his condition of moderate to severe mental retardation we were advised to go for a second issue for which I felt that , “No , I am not ready for any more uncertainties in my life”; even my wife had lost courage in that matter.
Since then our life went ahead with Deep. He has become an indispensable part of our life & our identity has been more prominent, it seems because of him. We have taken him on tours to different parts of India even with all adversities & difficulties. Manisha & Deep have participated in Standard Chartered Marathon held every year with fancy dress , with Deep in wheel chair.
We manage Deep’s daily routine like giving bath, brushing & cleaning him (& soiled diapers), toilet training or feeding & dressing him up for school ; WE divide these duties or share it together; at times we get frustrated , but his selfless love , innocence , gestures makes us forget all our worries of tomorrow.
And as we are seeing today that parents of normal children have same worries & insecurities about their children like we have for Deep, so life is same everywhere.
- Dr. Shailesh Khakhar
( How a Mother dedicates her life to a cause , read in the next edition. Friends, Mrs. Manisha Khakhar is a real life ‘hero’ amongst us. The visit to Skills & Ability school for special children was an overwhelming, humbling experience for me. I implore IMA Mulund to adopt the school – dedicate ourselves to a social cause. – Editor)
I, Dr. Shailesh Khakhar & my wife, Manisha were really glad when approached by Dr. Hemant Agrawal to give an article In Image about life with our special child Deep.
Deep was born to Manisha 18 years back (1991) , the day on which Mumbai was submerged with a continuous downpour. It was otherwise a FTND ; only that she did not feel fetal movements , had fallen from a scooter in 2nd month of pregnancy but with no untoward clinical or USG findings.
Deep was born with hypotonia, unable to hold head; poor cry & mild peripheral cyanosis, making us feel something amiss with our new born. On that fateful day we were unable to get a Paediatrician even because of water logging in the city.
Later our friend & Paediatrician Dr. Manoj Sangoi took us to Dr. Vrajesh Udani at Hinduja where my child was diagnosed with M.R. (Mental Retardation). Our world fell apart on hearing the diagnosis; we were shattered & numb; went into denial mode, unable to accept. I was full of negativity & felt alienated to the surroundings, not ready to accept – “how it could have happened to us?” Our next few months went into counselling (psychological) & investigations on Deep including MRI, hearing test like BERA, genetic test karyotype which all turned out normal. Even samples were sent to USA for certain Aminoacid tests to rule out metabolic disorders – no exact cause could be pinpointed for Deep’s CNS affection.
Deep’s milestones were delayed ; we started with physiotherapy thrice a week at Hinduja Hospital.
I was jealous of my friends & relative’s children growing normally & going to normal school ; where as my child was to be taken for therapies & IQ assessment & when I realized that he would not be able to go to normal school , it was difficult for me to accept !
It took me few years before I could come to terms & take control of reality, “Yes I have to live with it & I cannot ruin my & others life around by being ignorant.” I used to avoid taking DEEP to social gatherings previously, but slowly charm of his innocence & cuteness, positive atmosphere in family (& friends) & positive attitude of my wife - all helped a lot to come back to the society in which I felt , “Yes I am part of it.”
Considering his condition of moderate to severe mental retardation we were advised to go for a second issue for which I felt that , “No , I am not ready for any more uncertainties in my life”; even my wife had lost courage in that matter.
Since then our life went ahead with Deep. He has become an indispensable part of our life & our identity has been more prominent, it seems because of him. We have taken him on tours to different parts of India even with all adversities & difficulties. Manisha & Deep have participated in Standard Chartered Marathon held every year with fancy dress , with Deep in wheel chair.
We manage Deep’s daily routine like giving bath, brushing & cleaning him (& soiled diapers), toilet training or feeding & dressing him up for school ; WE divide these duties or share it together; at times we get frustrated , but his selfless love , innocence , gestures makes us forget all our worries of tomorrow.
And as we are seeing today that parents of normal children have same worries & insecurities about their children like we have for Deep, so life is same everywhere.
- Dr. Shailesh Khakhar
( How a Mother dedicates her life to a cause , read in the next edition. Friends, Mrs. Manisha Khakhar is a real life ‘hero’ amongst us. The visit to Skills & Ability school for special children was an overwhelming, humbling experience for me. I implore IMA Mulund to adopt the school – dedicate ourselves to a social cause. – Editor)
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