#inspiringwomen: She Never Lost Hope – Through Life’s Toughest Challenges

In a crisp saree, ramrod straight back, not a hair out of place and a graceful smile. That’s Ruby, easily the smartest lady in our office. Born and married into a defense family, she is a living example of the values of the armed forces – strength and integrity. Without these, perhaps, it would have been difficult for her to handle the challenges life threw her way.

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Youngest of seven siblings, Ruby was born in a post partition India, twelve years after her parents crossed the border from Pakistan. She tells me that her mother was in a petticoat and the youngest child stark naked when they arrived in India. Her family, along with other Hindu/ Sikh families, managed to survive because their Muslim friends safeguarded their houses and helped them escape when the time was right.

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Born in Lucknow and raised across the country, Ruby grew up as a happy go lucky girl, interested in sports and taking life as it came. Married in her 20s, she moved to Jabalpur with Harjinder, her husband. The couple was soon expecting their first baby and excitement was palpable in the air. Everyone wanted a girl as the family had all boys. Her mother in law got busy making frocks. And girl it was! On January 21, 1980, Prabhdeep was born.

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While her pregnancy was uneventful, Ruby’s labour was over a day long. In the labour room, it had been a busy night and the doctors had birthed 9-10 babies already. By the time Prabdeep (lovingly known as Chhotu) was born, both Ruby and the doctors were exhausted. When the baby finally pushed her way out, lights went out. In the ensuing confusion, combined with a weary team of doctors, they forgot to make the baby cry. THEY FORGOT! Medical profession is one such profession where a normal human error can have a huge cost. In this case, it cost Chhotu her first breath and consequently damaged her brain. Permanently. Irreversibly.

But Ruby didn’t know. Nor did the doctors.

What’s wrong with my baby?

As months passed, it became evident that all was not well. Chhotu wouldn’t cry. Pediatricians told them crying was important for her lung development. They asked Ruby to slap her and make her cry. She did. Chhotu cried. Sequence repeated. Endlessly.

But even now no one suspected brain damage despite the tell-tale signs. This was the 1980s and perhaps knowledge of brain injuries was limited. Not only limited, I would say there were prejudices as well as denial. When Chhotu was 11 months old, they had an army doctor couple as neighbors who had a same age girl. Sensing Chhotu was “not normal”, they wouldn’t let their girl play with her. This, coming from a doctor couple. When Ruby consulted another pediatrician, he refused to believe anything was wrong with Chhotu and instead referred Ruby to a psychiatrist. Apparently Ruby was “imagining things”!

But Ruby refused to believe them. She knew something was wrong. On her way from Jalandhar to Bhatinda, Ruby took Chhotu to Christian Medical College in Ludhiana where they had been referred by a friend. The intern who examined her there immediately suspected cerebral palsy and sent her to a physiotherapist.

Finally, Ruby had a diagnosis. And understood the reason why. But bigger and more important challenges lay ahead. Helping Chhotu develop. Become independent. Making her financially secure. A long journey lay ahead.

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The road ahead

I asked Ruby how she felt at that time. After all, a diagnosis such as this is not easy on any parent. I know. I am parent to a special needs child too. But she says they had no time to feel anything. Going from one day to the next, handling daily pressures, left them no time to grieve. Her husband took a posting in Delhi on compassionate grounds so that they could get her the best treatment from AIIMS. Husband and wife took turns to take care of Chhotu on a daily basis. Harjinder would come home by 1.30 and give Ruby a break. And soon a routine was established. It is commendable is how both of them took the entire responsibility of care-giving for Chhotu – feeding, bathing, changing and still do. They never relied on any outside help.

When Chhotu was four, they admitted her to a school. Lady Irwin college – home science, Child Development department ran nursery classes for children including those with special needs. The school was a blessing for them. Chhotu was taught basic etiquettes, painting, playing and there was a lot of integration with ‘normal’, neurotypical children. Chhotu thrived there, slept well, ate well and was happy. Ruby remembers the first day she dropped Chhotu at school. She wanted to go in with her, worried how she would react, away from her mom for the first time. Not allowed to go in, Ruby sat on the pavement outside the school for three hours, waiting for Chhotu to come out. She need not have worried, Chhotu was happy and had had a great day!

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A series of horrors

By the time Chhotu was six, she had outgrown the nursery school and her parents started looking at options. And then began a series of horrors. Chhotu was sent to a famous school for special needs children. Started by someone with a special needs child herself. The school had good facilities, but teachers lacked compassion. They seemed to focus on children who showed faster improvement. And sort of ignored those who lagged! Ruby recounts, “once when I went to pick Chhotu, the teacher told me she has been punished for not counting from 1 -10. And what was the punishment? She wasn’t allowed to eat her tiffin and the little child remained hungry from 6.30 a.m. till 1 p.m.” “I just couldn’t send Chhotu there anymore.”, says Ruby.

At another charity institution where Ruby sent Chhotu, she found out they were in the habit of hitting kids – Chhotu would come back with cane marks on her legs. And at yet another school, a Chinese Checkers peg that Chhotu stuffed up her nose went undiscovered for two days, till Ruby noticed her discomfort.

By this time, her parents also realized that while Chhotu was growing physically, development in other areas was slow. There was no speech till age 4 and even today at 39 years her speech is not very clear. Till age 7 she wore plastic panties and was still not fully toilet trained at 13. A bigger issue came when she hit puberty at 12 and had to be taught how to manage her periods. The last was perhaps the most difficult to manage. She had fibroids and would bleed heavily and more often. The doctor suggested hysterectomy. But Chhotu’s father would not hear of it. He took it as his personal task to help her manage. However, he had to give in when he realized that it was physically taking a huge toll on her. She would droop from the strain and pain of it. The family took a tough decision and decided to go for the operation. Chhotu took it in her stride and was up on her feet the day after the operation.

By this time, Ruby and Harjinder were sure their daughter needed greater support to become more independent and were unable to find it in Delhi. After much research they found out about Swayamkrushi based in Secunderabad, an institution for children and adults with special needs that aims to make them independent and become part of the mainstream society.

At age 14, Chhotu went to Swayamkrushi, to live away from her parents. Another tough decision was taken.

Today Chhotu is a happy young woman

Swayamkrushi was a blessing for Chhotu. She adjusted very well there and has made some very good friends. Today she is a happy and very loving person. Her smile is infectious and you cannot help but smile in her company. And like every young woman, she loves to dress up, shop and is interested in men!

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At Swayamkrushi she was trained to take care of herself. Soon after joining Chhotu became toilet trained. She was able to do small things for  herself. Now when she is at her house, she helps lay the table, put dirty dishes for washing and clothes in the washing machine. She also goes to a special school where she helps lay the table for children and gets to interact with them at a personal level.

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Ruby believes that peer learning, interaction and peer pressure helped Chhotu develop the most. And she has Swayamkrushi to thank for this. To see the work Swayamkrushi does, please see the coverage they received from NDTV, where Ruby also talks about the positive impact this institution had on their lives.

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Building a financially secure future for Chhotu

Early on, Ruby and Harjinder realized that it was important for Chhotu to be financially independent after they were gone. They were also clear that this couldn’t be done only on Harjinder’s income. So she started with small, temporary jobs. She was once selling cards made by special needs children at embassy when she was told about a temporary job at the World Bank. She approached them and got the position. She started with a two week job, which quickly became a month and soon she was filling in for anyone who was on leave. Slowly she got a 6 month tenure and then a one year and then another. By 1992, she had a full time job. And she never looked back after that.

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The hard work paid. They managed to build a house; move from a scooter to two cars and then to another house in Secunderabad. Ruby has also heavily insured herself in case of any eventuality and both Harjinder and she have prepared their wills. Chhotu is also a member of the national trust and two of her cousins (one from each side) are her guardians.

These days, Ruby is putting together a trust for Chhotu with 5 trustees – 2 cousins, a bank manager and a teacher from her school. This trust will ensure Chhotu has a regular income stream and funds available in case on unexpected needs.

Soldiered on like a true warrier – Hats Off

As Ruby and I spoke in length about her life, she revisited areas of her past buried deeply within her. She told me there was a second baby too. Chhotu was around six at the time and was very excited at the prospect of a little baby. Harjinder was posted at Kargil at the time. Her baby boy was born at 37 weeks with a punctured trachea that caused edema in his wind pipe. The child was kept on ventilation. His left cheek had a droop and he was unable to swallow. Even in this situation, the gynecologists and pediatricians were embroiled in a petty battle. Ruby’s gynecologist wanted to keep her in the hospital, but the pediatrician saw no need for it as she wasn’t feeding the baby. On the 10th day she was discharged.

That same evening when they came to see the baby, the incubator was empty. They went across to the pediatric ward to speak with the attending doctor, when they enquired about the baby – he said that the baby had passed away.  We wanted to know where the baby was – he said – “aur kahan hoga…. Mortuary mein” (“where else – in the mortuary”)………..

As she relives this horror, her tears flow for the first time. I am speechless. And at the same time in awe of this woman who has gone through so much, has weathered so much and still exudes so much positivity.

Her advice, “take each day as it comes, and let things happen at their own pace.”

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I hope you found Ruby’s story as inspiring as I did. Please do share – it may give courage to someone else who needs it. #thesewomendeserveit.

I Wish to See 2019….

This was my father’s New Year wish for 2018. To be able to live through this year. The wish was not granted. He passed away in February, soon after making this wish. My sister discovered this, in the online diary he kept. We went through his past logs and found out that he had made the same wish on January 1, 2017 too – that he wanted to see 2018. At least he fulfilled that wish. We were comforted.

So, we realized, he had been aware of his numbered days, that his body was becoming frail. And his will to live became stronger. This is called jijivisha in Hindi. A very powerful word. It is this will to live that defines us.

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Nobody who saw him would have thought that he was unwell. And neither did he let anyone believe that. His last few years were full of activity – his mind always involved in creating something. He wrote books, stories, made new games – card games, board games, made new gadgets and what not. If I had to learn one thing from him, it would be this – To keep living, to keep creating, to keep moving and not stopping.

So, this was him – full of life and full of love for people he cared for. An idealist, who believed in the power of the individual and an atheist who believed that humans use God and meaningless rituals and superstitions as a crutch to live life. While other parents wish their children the Best of Luck before exams, our father wished us the Best of Ourselves. In my autograph book, he wrote – “never quote others, reach a level where others quote you”. Not surprisingly, towards the last few pages of that diary – his quote came back – from someone else!! I am still striving to get there – to a place where I can perhaps inspire others or influence their lives in a positive way.

A very supportive father, who believed completely in his daughters. I was never questioned about any decision I ever made – be it the choice of stream (commerce) or choice of career (rural management) or the person I chose to marry. That is what contributes to our innate sense of confidence. That is what guides me when things seem bleak. As a parent, I must remember to instill that kind of self confidence in my children – the spine that will help them through any crisis.

Our parents displayed so much faith in us that we turned out to be very responsible daughters. We never kept anything at all from them and felt totally free in sharing what we felt. Trust begets trust.

A very gentle and caring man. Devoted to those he loved. By his mother’s side during her last days focused on fulfilling her needs. In the last year of his own life, a solid pillar of support for our new born twins. I don’t know how we would have managed without him.

Always young at heart, till his last breath perhaps. The first to step on the dance floor – he was well known for his Twist! I was always too shy to dance in public but loved my waltz with him. The New Year’s Eve dances with him were special. When satellite TV caught on in India – he was the one who started watching MTV and Channel V. Much before us! I need to remember this as I grow older – age is only in the mind.

It has been more than 6 months now. But it still seems like yesterday. I have remembered him everyday since and I especially remember him today. Today, he would have turned 74. A life well lived – but there was so much more life still in him. So many more things left to be said, to be discussed, to be debated….

Yesterday Arnav asked me the meaning of the quote, “all the world is a stage…” I told him that this world is like a stage where all of us are playing our parts. And unexpectedly he said – “And nanaji is out of his part”. I hope not. I just hope he has switched stages…. And is playing his part somewhere else.

Happy Birthday.

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(and even though I have copied above from the net, it reflects my feelings – and sorry there was no ownership so don’t know who to give credit to)

 

My Special Needs Baby – My Inspiration

If you have been following my blog or know me personally, then you will know that my littlest baby Anvay has special needs. What this means is that his pace of growth is much slower than the typical child and we also don’t know yet how independent will he become. Needless to say, any parent would be devastated to hear that their child has special needs. So was I. One year ago, we found out about his condition, and since then I have come a long way. I wrote about my grief earlier this year. You read it and you sent your support. And I realized that lessened my pain. It helped me deal with my feelings. It helped me accept and acceptance helped me focus on the future. The future of my baby. So thank you for your support and your wishes.

Today, about a year after the diagnosis, I am glad that I am a better person, a stronger person and a somewhat happier person. And in that mental transformation, my baby has been my inspiration. He has helped me face one of my worst fears and has shown me that faith and hope are an essential ingredient to leading one’s life. I have also learnt from his sheer grit, his patience and his ability to smile in pain. Today I want to share some of what I have learnt with you.

Aside from losing a loved one, the greatest fear I had was having a baby with special needs. I thought I would never be able to handle it either emotionally or physically. I felt I was not strong enough. But I have realized now that the strength to handle anything is within us. When faced with a situation, we need to look deep within us, and we will find that we are already armed. I learnt that when you face your biggest fear and look it in the eye – it diminishes and gives way.

Once I accepted Anvay’s condition, I found hope and faith to be my best allies. In his condition, there is no cure but through regular therapy many babies start functioning normally as they grow up. But no doctor or therapist could tell us what to expect as Anvay grows up. Will he be able to walk? Maybe. Will he be intellectually disabled? We don’t know yet. What about his eyesight? Might improve. When there are no clear answers, Faith is the only thing that makes you go on. The faith that my baby will also progress and become independent and perhaps read this blog one day. And Hope is faith’s best friend in this journey.

One of the conditions that Anvay has due to his brain injury is spasticity. It basically means that his muscles tend to pull back inwards and his limbs remain tight. Diapering him is not always easy because his legs don’t open up properly. For many months after he was born, his fists were often clenched. This is due to his spasticity. And spasticity can be painful. If you try moving around with clenched arms and legs you would know what I mean. He used to cry a lot during his early days and we realized after his diagnosis that a large part of this must be due to the spasticity. Through therapy he has improved now, but it still hurts him and he cries. And each time I hold him, console him, he smiles. He smiles despite his pain and tries to stop crying. He is just 20 months old and he teaches me to smile through my pain and move on. By the way he has a sunshine smile and any advertisers out there should seriously consider him for their shoots! (P.S. it will also help you spread awareness about special needs children)

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And with that smile come his grit and his patience. The part of his brain that was injured transmits the messages from the body to the brain. The reason he is not able to sit up is because his brain is unable to tell his body to get up. But he tries. And he keeps trying. These days he is trying to lift himself up on his fours. He pushes himself single mindedly till he is tired. He fails and he fails again and then he pushes himself once more. And he screams with the effort. Think of a weightlifter lifting a heavy load and his grunts from effort and pain. I feel ashamed at how easily I sometimes give up after a dose of failure.

But the more difficult something is, greater is the happiness in its achievement. Every bit of the progress Anvay makes, brings us ten times the happiness. It reminds us of the effort that went in. It also reminds me to not take anything for granted. I cannot take for granted the fact that I can think and walk and talk. But for a few seconds of lack of oxygen, Anvay would have been like us. Those few seconds of oxygen, is what we should all perhaps be grateful for.

I mentioned above that the communication pathways in Anvay’s brain have been damaged. So how is he overcoming that problem? When I understood how, I found two important lessons – both philosophical and scientific. Through therapy and his own efforts, Anvay’s brain is trying to rewire itself. In science this is known as neuroplasticitythe ability of the brain to change throughout its life by forming new connections. This has a lot of significance for all of us. It means that even as the brain ages, we can continue to learn and the more we use these connections, the sharper our brains become.

At a different level – what this means is that – when one route closes, we need to find another way. It will be tough, it will be challenging, but we should be sure that another way exists. If it doesn’t we can forge our own path. When a door closes on us, we know there will be many others to choose from – if only we stay focused and look hard.

Finally and perhaps the most important lesson I have learnt is that we all live at our own pace. I will be honest and say that it pains me to see the increasing gap between Abeer’s and Anvay’s abilities. But I am learning to ignore that gap. I am learning to compare Anvay’s progress only against himself. I believe he will make his own way, with whatever he gets or does not in life. His life will have meaning and we will find it. I will consciously avoid comparing him with how a typical kid would grow. I also try to stop feeling cheated about the deal Anvay got. This is what we have and this is what we will live. In the best way possible. And ultimately, all we need to be is happy. That is the one single goal we need to strive for – whatever our pace.BLOG- MY ESP NEEDS BABY- 2450x800

Lastly, for those who would like to know – Anvay has been improving – slowly but steadily. He is able to roll over – he sits up without support for a few minutes, he is focusing better, he is able to creep a little and also pull himself up with some support. So please add him in your prayers and send us your love – from wherever you are. And I will keep updating with our progress.

Why is it SO Important to Know and Understand CHILD SEXUAL ABUSE

The number of child abuse cases coming to light seem to be increasing at an alarming rate. According to the National Crime Records Bureau, every hour, 4 children in India suffer from abuse. Often, in the same day’s newspaper, more than one child abuse incident is reported. Moreover, these cases are not restricted to a particular gender or economic class. In fact, contrary to popular perception, young boys are at a higher risk of sexual abuse than girls.

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No parent feels secure today. Many parents are worried when they leave their child alone even in safe or secure places. I have an eight year old son, and whenever he goes down to play in our apartment complex, one part of me is always worried. This is despite the fact that I live in a gated community, where strangers are not allowed in without permission and small children are not allowed to go out on their own. This is in such stark contrast to our own childhoods, where we played outside our homes fearlessly and our parents were assured of our safe return.

Living in such times, the FIRST THING that we as parents should know is WHAT CONSTITUTES CHILD SEXUAL ABUSE. Most people erroneously believe it be only physical abuse. Inappropriate gestures or sounds with sexual intent, making a child watch objectionable content, all come under the category of abuse. It involves mental, physical and emotional abuse of a child through overt and covert sexual acts.

The NEXT most important thing is to MAKE YOUR CHILD AWARE OF ABUSE. Even a small child can understand the difference between private parts of the body and good and bad touch. I attended a workshop on sexuality during my college days, where during a session on child abuse, someone shared a very interesting anecdote. One of her friends had taught their young child about private parts and told her that if anyone other than her own parents touched her there, she should just yell, “Don’t touch my booboo”!!! Admittedly, it led to some fun and embarrassing moments, but the parents were at least secure in the knowledge that their child could scream out if required. Next, tell your child not to keep any secrets from mommy and daddy. This is important because typically, the perpetrator convinces the child that this is a secret between the two of them. Finally, parents should always keep channels of communication very strong between them and their children. It is only then that children will feel secure sharing their fears or negative experiences and emotions. For slightly older children – preteens and teens, it is important that parents start discussing sensitive issues such as attraction, crushes, relationships, sex and abuse. Children need to know that they have a right to say no when they are not comfortable in any situation. And also to not give in to peer pressure.

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THIRDLY, be able to recognize any signs of sexual abuse in your child. I think it is important to be aware of any cues the child may be giving – any change in behavior, refusal to go to any particular place or meet a certain person, any kind of pain or any bruises on the body should not be ignored. Other symptoms could include insomnia, bed wetting, a clingier than normal child, or a child who is withdrawn. Guilt and shame or confusion are very common feelings a child might go through. A parent, sensitive to the child’s subtle changes will be able to recognize such feelings more easily.

It is also important to be aware that the ‘abuser’ can be lurking anywhere – in our homes, in our housing complexes, in schools or in public places – in the form of friendly uncles, household help, guards, conductors, even friends or older peers – you name it. It is well known that most cases of sexual abuse happen with people whom the child knows.

In this scenario schools and day care centres become very important in partners in children’s safety and security. A child spends more time at these institutions than at home. It is natural for parents to want to ensure that the safety measures being taken are sufficient. There are a number of things that schools can do safeguard their students against child abuse.

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The first and foremost and also the easiest is to put in place physical infrastructure that can prevent abuse. Simple measures such as CCTV cameras in various parts of the school can be an obvious deterrent. Ensuring that support staff such as drivers, conductors, administrative department etc. are not allowed access to the school wing and have facilities that are separate from those of the students can also go a long way in enhancing security. Ideally there should also be a separation between senior students and the younger ones. Many young teenagers can also become perpetrators. School buses can also have CCTV cameras and any change in bus staff should be duly informed to the parents. A lot of the newer schools already have many of these facilities in place. Many day care centres allow parents access to live footage of the babies. Moreover, schools should have a no tolerance policy in cases of child abuse.

Secondly, it is important to educate both teachers and students about sexual abuse. This should be taught in all classes and children should be encouraged to reach out to an elder in times of difficulty. There should be anonymous helplines in place as well as counsellors in school. Schools should also put posters across the school, so that the issue of child sexual abuse does not become taboo to talk about. Teachers should also be trained about recognizing potential perpetrators as well as how to respond if a child approaches them or they observe a case of child abuse.

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Finally, as a society, it is important that we act in a concerted manner against the menace of child abuse – be gentle and responsive parents, alert citizens and responsible educators and care givers. It is important to break the silence around the issue and mainstream the discussion so that more and more parents and therefore their children become aware of child abuse and prevent such cases. As a society we should be able to raise confident and secure children, children who live in safety and are free to reach their true potential.

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This article was first published in April 2018 issue of The Education Insights

The first child – our experiments with Parenthood

Let me start by modifying an old adage – “The moment a child is born, parents are also born”. Both the mother and father step into parenthood together – an exciting but unknown journey. New parents are keen to do everything correctly, by the book and give their best shot at parenting.

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As parents, we believe that we are the ones imparting knowledge, but it is also equally true, that we are being taught by our children. Parenthood is a journey we undertake with our children, and the first child teaches us those first steps. He leads us on a path we have never tread before and he provides us the first opportunity to experiment our parenting skills! With this child, we learn how to be parents and simultaneously evolve as human beings.

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Arnav, our first born, gave us the gift of parenthood. It has been eight years, and the journey has been fantastic, peppered with fun, laughter, learning and not to mention, a fair share of challenges. Arnav evoked in us feelings we didn’t know existed. I will never forget my first look of the little pink creature. Tenderness assumed a whole new meaning! The little tidda – completely dependent on me for his every need. And he was my little doll!

And dad? He admitted that only now he really and truly understood the meaning of the word DARLING. (hmph, and I thought WE had a special thing going between us!!%*&#^%#%^). In office, he would go over and over again his little baby’s pics!! And let me break a stereotype here – supposedly men complain that their wives do not pay as much attention to them after the baby, in our case, I am the one who should file a complaint of negligence!

During pregnancy, I had naturally done a lot of googling on bringing up a baby, and even compiled it all in a book. But after Arnav was born, we ended up learning on the job, the book forgotten. I remember being scared of even holding him – he was so tiny and fragile! At the same time, I couldn’t imagine not co sleeping with him and overcame the fear of crushing him! And while we are on the subject of co sleeping – I would like to confess publicly how soppy we are as parents. Even as we moved Arnav to a separate room, we missed him a lot and kept bringing him back to our bed! And now with three kids – many times we still end up sleeping together! Yes, yes, I know three is a crowd and five is a railway platform!!

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Arnav was like an ideal baby, with a lovely temperament, didn’t make us stay up at nights, no howling, no colic, no tantrums. A hyperactive baby, but very easy to manage (unlike his bratty brother). The two’s were never terrible – we never had to use safety locks or clear away bottom drawers. We also let him be – apart from being conscious about his safety, we never really cared too much about where he was roaming or what he was licking and our floors were never mopped with Dettol. After all, we surmised, if he has to live in India, he might as well make peace with all the germs around!

We also agreed not to fuss too much about this new entrant and take life as it comes. We did not stop doing any of the things we did as a couple before. Consequently, he saw his first movie under the age of two months, went out with us everywhere, including a trip to Jodhpur and Jaisalmer in freezing December at 10 months, getting wet in the first monsoon rains and numerous trips to Jaipur to meet his grandparents. Our unsaid belief being that a child will adapt to the surroundings he is brought up in. Be careful before you fuss for total silence while the baby is sleeping – you are likely creating a problem for your own self. Let him learn to sleep wherever he is regardless of whatever noise there may be. No point constraining ourselves or mollycoddling the babies. In fact I think they are better off for it. My uncle and aunt who were in the television industry carried their infant daughter around everywhere – at shoots, on a scooter, in freezing cold, at unearthly hours… and she adjusted fine – and has grown up into a smart young woman.

Similarly with Arnav. I joined work when he was four months, and dad took on the primary responsibility. Dad would take Arnav to his workplace in his little baby basket, armed with his diapers and milk and our helper. He would coo his way through the day, drawing admiration from dad’s many employees! He also spent some time with grandparents in Jaipur (sans mum and dad) without any fuss! And then at eleven months he started going to a crèche, which also he adapted to pretty quickly.

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Kapil is totally right brain and I love reading. So naturally we were keen that Arnav picks up at least one of these attributes from us! We started buying him a lot of books pretty early and by age six, he was a voracious reader – both fiction and non fiction. Now he tells us facts we were never aware of – for example we had no idea that the word Google derives from Googolplex which is a number nearing infinity. (btw we are not the only clueless ones – a number of adults we checked with did not know this!!).

We also started doing theme birthday parties for him, starting his on 4th. These birthdays have become an annual event, where soon after one birthday ends, we all start planning for the next. Both dad and mum and even nana- nani have gone overboard, planning and executing these birthdays, and these have really worked wonders developing Arnav’s imagination and knowledge. For every theme, he gets books and gifts related to that theme and so do his little guests. As a result, Arnav (read geeky child) now has some awesome knowledge about various things such as dinosaurs, space, pirates and detectives! (and deadly combination of reading and theme parties has resulted in the demand for a Harry Potter theme next year combined with a wish list of potion books, spell books… you get the point!)

We also decided to expose him to various activities to let him explore and find out his interest areas. We sent him for dancing, for cricket etc. to see if he found a passion. (he didn’t). It is very easy for parents to expect the child to be interested in things that they love or think are right. A small example – Arnav had to choose an extra curricular activity this year – choice being a lot of things like music, dance, drama, IT, robotics, home science etc. I was quite sure he would choose either one of the performing arts (these are things I loved) or robotics (which I assumed he loved). He chose home science instead – because he loves to bake!

Another friend told me how he worked his daughter hard on karate and now she is a black belt at age 8. But despite this achievement, he will probably not push his second daughter as much. I think the key is to keep ourselves open to the child’s wishes and not impose our own.

We were also quite clear that our parent child relationship would be based on mutual respect. So Arnav was always given due respect as an individual and treated as an equal (even at age 3!). (That does not mean that I have never screamed at him for driving me crazy). Basically this meant that we gave his choice and voice equal importance. My sister and I could share anything with our parents without fear. This is what we would want too. So we have kept our channels of communication open. This would ensure he comes to us when in doubt or difficulty and would not hesitate to trust our opinion.

I would like to believe that our approach has helped create a strong bond of friendship between us. (When Arnav’s nursery teacher asked him who his best friend was, he said Kapil. It took her very long to figure out that he meant his dad!) It has also helped Arnav adjust to his new brothers with ease. (after being an only child for 7 years – it might have been tough on him.) Dad increased his father-son time with Arnav, taking him out in the evenings (to Reader’s Cafe) , having heart to heart chats etc. And thankfully Arnav has transitioned very well into the role of the older brother – more than happy to take care of his siblings (including wanting to tag along one of them to school!)

So far, so good. But it isn’t always this hunky dory. I feel sometimes that we may have carried on this buddy relationship too far! Meaning, that there are times when we find it difficult to discipline him regarding work, he also seems to have developed the idea that he knows everything, and is not always ready to listen to us. I also feel that we may have given him too much choice in all matters, something that is now boomeranging on us! There are some values, that I think are missing  – such as focus, diligence and commitment. But maybe that is too much to ask of an eight year old!

I have also learnt that parenting style needs to be tailored to the child’s personality. I have seen both my mother and mother in law practice this. Both Kapil and I have siblings very different from ourselves. And I have seen how in both cases our mothers adopted a different style with each sibling – grooming and guiding them. I am still trying to figure out my child’s personality and this is evolving.

So for now I feel we have the work cut out for us – it is a question of how much to steer him and how much to let him evolve on his own. How much to discipline vs how much to let him free. When to be firm? How firm? How strict? I am not yet sure I know the right balance.

But as we continue trying our best, I do remember that we are just the bows from which we have sent forth our children…

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Grieving the Loss of the Perfect Child

From the time a baby is conceived, parents and close family start weaving their dreams around it. How would it look like, a girl or a boy, what kind of a person will she grow into and so on. We all have our image of a perfect baby, the perfect child. He is an embodiment of our dreams and aspirations.

When we found out we were having twins, we were ecstatic. Images of fun filled laughter, two little babies gamboling together, two pairs of little feet running around the house, filled our minds. We loved watching twin videos on YouTube, tickled with the thought that this fun would soon be ours. When Abeer and Anvay were born – we talked often about how they would turn out when they grow. Abeer, the attitude kid, looked set to become a Rockstar and Anvay, with his perfectly proportioned body was going to be our super model. We imagined the two boys and their same aged cousin, in their early twenties at Arnav’s wedding. Three lanky young boys, having the time of their lives.

But now I am not so sure if these images would ever become reality. Because unknown to us, while we celebrated the birth of our twins, Anvay had sustained brain damage. Anvay, the healthier of the two, who was not even a likely candidate, had sustained brain damage. I have no clue, what happened between the two minutes between the time they both came out, that led to this. Their birth was apparently normal. The doctors did not find any anomaly. In fact, they did not even do an MRI when Anvay was discharged (which they did on Abeer) from the hospital – I am assuming because nobody expected what had happened.

The news that your baby is damaged is devastating to any parent. Devastating is actually putting it very lightly. It rocks the world of the parents. All the dreams, hopes and desires come crashing down. The process of grieving begins. Yes, it is grieving. You grieve for what could have been, what should have been and why it isn’t what should have been.  The parent grieves for the loss of the perfect child, the imagined child. A parent will typically go through all the stages of grieving – denial, anger, bargaining, grief, and eventual acceptance. I recently read a blog from a parent who writes about grieving for a child she has not lost.

I like to believe I am stoic. And I am, to the extent of being able to control my emotions outwardly. I took the news as normally as possible – showing concern, but able to hide the panic. Reading pages after pages on his condition and internalising all the good and bad scenarios. I managed to harden myself to the extent of being able to talk about it without losing composure. I told a few friends/colleagues – but I opened my mouth only when the instinct to break down had been pushed down to the depths of my stomach. I can proudly say that I managed to explain his condition as objectively as possible. The discussions with the neurologist were kept as matter of fact as possible – even humourous.

 

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But grief has a way of coming out. You hold it tightly at one end, it will slip out from another. I remember watching Dunkirk and realized I was crying – it had nothing to do with the movie. Sometime on a plane – watching Hello Zindagi, I discovered my face was all teared up. I can’t remember the number of times I have cried sitting in the backseat of my car, safe in the knowledge that my driver doesn’t have eyes in his head. But I learnt to let the tears flow. They needed to come out, for us to be able to move ahead and plan for Anvay’s recovery, with a clear head.

Anvay was 6 months old (corrected age 4 months), when his pediatrician said that his muscle tone is high. It made no sense to me. He then went on to say something about spasticity – which rang a bell in my mind. Spastic? Does that not mean mentally retarded? (it does not) I was immediately horrified and the image of a helpless, mentally retarded child went through my mind. And laughably, one of my thoughts was whether he would ‘look’ normal. That, really is the least of my concerns.

Once we got the MRI done, we got a confirmed diagnosis of PVL – a form of white matter damage in the brain. Our pediatrician (he is a great guy) told us not to worry. He had seen many cases, where children with PVL after initial years of struggle went on to lead perfectly normal lives. Though he was concerned about his CVI – which is a visual impairment where the eyes can see but the brain cannot perceive. But when we found out that Anvay was also having seizures, also known as infantile spasms, he sounded pessimistic for the first time. And that I think also finally sagged my spirits.

However, there is hope. His spasms seem to have been mild and were treated within one month. They have not recurred since and we have our fingers crossed till he turns two. He is improving – albeit slowly – but that is expected. He is rolling now, holding things in his hand and the other day, he ate a biscuit on his own. Every little step he takes is a cause for great happiness. He is a very happy baby and has the loveliest smile – it makes our day when he smiles at us. His naughty little personality has also started to shine through!

I talked about our dreams crashing. But I had also started the new year with a new hope. We are rebuilding our dreams. I believe in the human spirit – that it can rise up to any challenge and overcome it. I am sure Anvay and we will find a way. If one door closes, there are many others waiting to open – we just need to be willing to look for them…

Anvay IS my perfect child – as different and as unique as my other two….

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Abeer – Living with a bratty Toddler!

All of 1.25 Kgs, Abeer stepped into this world 8 weeks early. Tiny and all tubed up – is how Kapil and I saw him for the first time. Our hearts went out to the little one – but almost immediately, both of us commented that he looks like a Rockstar. We were of course not alluding to any good looks – at that size and weight, he could best be described as ugly (barely human) – it was his attitude – there was something in the expression even then, that said, I care two hoots!  We didn’t realise then, how close to the mark we were! Now that he is 15 months, he looks us straight in the eye (with a devilish glint in his own), baiting us, before proceeding to do the exact thing he has been told (requested /pleaded/ begged) not to!!

We shouldn’t be surprised. I think we had enough warning even while he was in the womb. Fetus A. That is how we knew him, through the 32 weeks of my pregnancy. Fetus A was clearly the more feisty one – he was always on the move! I was sure that he was the wild girl I had always wanted. So sure, that I had already chosen a name for him and his twin – Aranya and Arin. Aranya means the forest, the jungle – apt name for my wild girl. Wild he is, girl he was not. Well at least I was right on one count!

Before we get to know Abeer, we need to get back to Arnav – our first born. A totally sweet tempered child, who never kept us awake during the night, who was so absolutely well behaved whether at home or outside that everyone was amazed. Baby proofing? No need! Protecting walls? Absolutely not! Toy shop tantrums? Never! Public embarrassment? Out of the question! People commended us on how well we were raising our baby! We credited the sweet nature of our child – but somewhere we were sure some credit must also go to us! If nothing else, at least our genes must have something to do with having the perfect child! But how wrong we were! Come Abeer, and any self-congratulatory thoughts we had about our parenting have been thrown out the door!

Even before he learnt to roll or sit, he had mastered all the bullying sounds ever. Aaiiih???AAiihh? AAIIhh? AAIIHH!!!! Screaming with an increasing volume and pitch, he sure knew how to get attention, without moving a limb. Nana and nani, two people devoted to him, were the most abused as well! There was no way nani could save her spectacles or bindi from being snatched away. These days, she is filling in as the pole Abeer uses to slide down the bed.

And let us not even talk about his treatment of the younger twin. I don’t think he even realizes that Anvay is also a living being. (or if he does, he has clearly decided to ignore that) He likes to go and plonk himself directly on Anvay’s face. If Anvay has a pacifier in his mouth, Abeer would surely pull it out and put it in his own. These days he loves to snatch the milk bottle out of Anvay’s mouth and either start drinking from it or put on its cap. Pulling his hair, crawling over him or sitting on him are totally normal in the course of the day.

And what about the sweet tempered elder brother? Well, on more than one occasion (multiple actually), Arnav has come crying to me, complaining how Abeer is bothering him – he has either slapped Arnav or is sitting in the middle of some game he is playing or maybe torn the current book he is reading. While Arnav is quite protective about Anvay, he looks at Abeer as his equally able opponent!! Since last week, Arnav has been the Jaeger and Abeer the Kaiju (those who have seen Pacific Rim will know what I am talking about)

 

And did I say, we didn’t believe in baby proofing? Really? Well, I am reconsidering. After having just learnt to walk, he leaves a trail of destruction behind him. Any room he decides to visit – is left ransacked. I think he would put Mahmud Ghazni (or was it Ghouri)  to shame. Oh and wait – once you see him pick up an object and send it sailing across the room – you would agree that he has a bright future in discus throwing.

But seriously can I blame him? There is clearly nothing else that is more exciting. I wonder really about the claims made by toy companies – how well researched each toy is – the colours, the texture, the sensory and gross motor skills the baby will develop etc etc. Well let me tell them, they are WRONG!  They have absolutely no clue what their target group likes – it is usually not toys. (Even the wrapping paper is preferred to the actual toy!) By the way, tearing the day’s fresh newspaper is one of his favourite past times :-/

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A toddler first of all loves the dustbin – the more full it is, the better he can throw things about. Second is a boring black laptop or a phone. No, it doesn’t have to be on. It will still attract the baby. Third – household cutlery – tell me one child who would prefer a toy truck over a sharp fork. And such fun in pulling out all utensils from the drawer and throwing them – have you heard the lovely sound that makes? Can any electric toy even compare with that sound? And now that it is summer – an open fridge will attract them like bees to honey. I cannot open the fridge without him getting between my legs and trying to pull out everything in sight. I can write pages….

And don’t think he doesn’t know what he is doing. He does. Very much. And then to make up, he turns on his full charm. He knows very well the effect of his lop sided smile, or his adorably cute singing and dancing routine (mix of bhangra and pop – we told you he is a rockstar, didn’t we?) and if that doesn’t work he starts walking backwards on the bed, spurring every adult in vicinity into action.

He is our source of non stop entertainment in his waking hours. Well no, even in his about to sleep hours – remember Sid from Ice Age? Yes? Remember the scene where he was trying to go to sleep? No? Look at this. Well this is exactly how Abeer goes off to sleep! Flipping and flopping on the bed – tossing around the entire length and breadth, before he finds a position and spot he is comfortable in. And mercifully he sleeps then. And so do we, happy at having survived another day! Zzzzzzzzzzzzzzzzzz………..

P.S. tell me your toddler stories too!