living life – Mom: AAA+ -With a positive outlook

#inspiringwomen “I just want to hear him say mumma once more”

It was the same time of the year, four years ago. A slight chill had seeped into the air and the festive fervour was building up. Diwali was around the corner and most people across India were gearing up for the festival. We had a Diwali party planned in office and our colleagues in Bombay had planned for a puja. Later that day we received an email that the puja had been cancelled since a colleague’s child was critically ill.

At that time, I didn’t know the colleague well, but the news terrified me, and I prayed hard for her child. By evening it was all over. My colleague Joyce had lost her only son Brendan. He was 15. I cried for days after that. Perhaps because I also had an only son and losing him was one my biggest fears. Just the thought would turn me cold, and here was someone going through this unimaginable pain.

Over the years, I got to know Joyce a little. I admired how she managed to come back to work and how she still had her brilliant smile ready for you. But I never dared ask her about Brendan. I was afraid I might break down in front of her! But when I decided to write about #Inspiringwomen earlier this year, she came to mind. It took me weeks to get the courage to ask her and then when she agreed it took a few more weeks for me to get the courage to talk to her. And now it has taken me months to finally pen down her story. Its not been easy.

Early days

“I come from a simple, hardworking family.” Joyce and her husband Larson have known each other from a very young age. They started seeing each other in late teens and got married in their mid-twenties. She lived in a joint family with her mother in law and brother in law and his family. It was a one-bedroom-kitchen house and the loft was divided into two parts for the brothers. “wasn’t it inconvenient”, I asked. “everything has its pros and cons, the physical closeness also meant a kind of close bonding.”, she replied. They had a small family business. Larson and his brother made statues, moulded and painted them. Their mum handed them monthly salaries.

Life was simple and happy. In September 2000, their first baby was born. They named him Brendan Henry Fernandez.

Life was beautiful….

“life was beautiful when he came into my life”, reminisces Joyce. “We were so close. We laughed at jokes his dad couldn’t understand.” “even at 15 he was so simple, so childlike. He never asked me for anything – “whatever you bring mumma, will be good. I will eat whatever you make””. “but sometimes I would get angry with him, and now I cry bitterly”, she broke down as she remembered her only child.

“He was the head boy in class IV” ……“he was so smart and tall – he towered above both his dad and me”. “in class X he was chosen to be in the angel squad – he was taller than the rest and it looked like he stood guard over his friends”. His principal later said they never realised they had an angel in their midst.

….. “you know he was a foodie….he loved burgers….i would pick him up every Saturday from class and we would go to Mc Donald’s”

“I took him to Washington DC in 2014. He really liked the country and wanted to live there. He started planning for it before he passed”

Memories are never ending and memories are all Joyce has. She shared them with me. We cried together.

…. And then everything went horribly wrong

“Brendan and I celebrated our birthdays together on 22^nd October and on 24^th we brought Mother Mary’s statue home. Next day he went to school. He had complained of a headache but I told him to go as he had his practicals. But soon after, a call came from school saying he was unwell. That night he had slight fever.”

By the 28^th Brendan’s fever had climbed up. Joyce requested the doctor to do some blood tests. Dengue was spreading in the city. Both the doctor and her husband said a test wasn’t required, Brendan would be fine. She still went ahead and did the test. The test came positive but his platelets were 130,000 so the doctor again assured her that all will be fine.

Assured by the doctor, Joyce came to office on the 29^th. But she was sent back by her boss when he found out her child was sick. She came home and he seemed better. What she didn’t realise was that he was turning for the worse. By the time they took him back to the hospital on the morning of 30^th, it was too late. Doctors started to blame them. They spent all day in the hospital and even then Brendan looked fine. He just said, “mumma I want to sleep”.

“it was so difficult seeing him pricked with all those tubes. Seeing my distress, a nurse told me that all patients on that bed get better.”

“but the last time I went to see him, they had changed his bed….he never came back.”

I question God everyday…But still have faith in Him

“do you know that when I was eight months pregnant with Brendan, I fell off a moving bus? And then on his first birthday he was hospitalised with pneumonia. But then he grew into a hale and hearty child. I question God every day why he did this, when he saved him twice before, why didn’t he save him then?. There are no answers.”

I ask Joyce how she can continue to believe in a God that took her only child away.

“you know Sakshi, in 2006, I had climbed one of the local trains that had a bomb in it – I was the last person to climb that train. But seeing the crowd I got down. Even then I asked why me? How did I get saved?”

“A year before that – in the July floods – I was working in Bandra. For some reason that day, I stayed back in office – left office at 2.30 a.m. and reached home safe and sound after 7to8 hours. I walked in water up to my neck but I survived.”

“in 1996, minutes after my friend and I stepped out for lunch, my office building collapsed. I survived.” “So yes, I have many reasons to keep my faith even though I will never find answers to my questions”, she said simply.

And I think I understand. After what she has gone through, perhaps faith is the only thing that gives her some semblance of normality.

“I am not strong …. I am lonely”

“It has been 5 years, but even today I haven’t been able to accept. I haven’t moved on. People call me strong – but I am not. I miss him everyday. I want to hear him say mumma once more.”

“My husband has not been able to break down. He can’t because he doesn’t want to see me cry.” Larson cannot cry because he does not want his wife to be burdened anymore. And anyway men have never been encouraged to cry. He has kept his grief within and it is taking its toll on his health. He falls sick often.

Joyce and Larson are bound by their grief – a grief no one can understand. Life has moved on for others. Everyone has their priorities. For Joyce, time has stopped. “I am unable to attend family functions – it is difficult to see everyone with their families, their children. I feel deprived of this happiness. No one comes and talks to me. They are afraid because I always cry. Only my mom visits us sometimes.”

It is difficult to describe how helpless I felt at that moment. Nothing we can ever do, can fill the void in Joyce’s life, but can we not even take some time out and spend time with her? Or with any other Joyce we may know? Are we so afraid of facing someone else’s grief?

Losing a child is the worst nightmare possible. Nothing can be more devastating. This is one wound, time will never be able to heal. The most important thing you can do to help a friend or loved one who is grieving the death of a child is be available, understanding, and non-judgemental. If they call, answer, if they need time alone, respect that.

I am reminded of a recent incident of female orca (killer whale) who lost her calf. Many mother orcas are known to carry their dead calf for a day or two but this orca (Tahlequah) carried her calf for 17 days. Such grief had never been seen before and it moved millions around the world. After a few days, other female orcas started taking turns carrying the 400 pound baby so that the mother could eat and rest in between. The orcas surrounded this mother, literally helping her carry the weight of her grief. We need more human orcas like this.

And if there is another Joyce/ Larson reading this, please know that I am sending you my love. Your journey of grief is your own…. But find someone to share it with. Unburden yourself. Please reach out.

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“My son has no friends” Inclusion is not so difficult – all that one needs is intent

“My son has no friends except for my cousins”, related a colleague recently. “He is having problems at school, but I am worried if I tell them about his special needs, the school may create even more issues”. She confided in me after she read my blog and found out that I have a special needs child.

Even though my baby is still small for school, I could relate to what she was saying. My special needs parenting journey has been less than three years, but I can already see how the special needs tag immediately sets the child apart. The fact that he is just a child like any other, a person first before being disabled, somehow gets lost.

My first brush with this ‘discrimination/ differential treatment’ was when my twins Abeer and Anvay were less than a year old. A relative visited us and when she was about to leave, she handed a toy to me saying it was for Abeer. I was quite taken aback but did not ask her why there was nothing for Anvay. Or why didn’t she say this toy is for both of them? The incident still bothers me. Another relative sent toys for Abeer, he didn’t forget Anvay, but felt unable to choose something for him. But I don’t understand why. Anvay is a toddler and any nice bright toy would do. Why the hesitation or confusion?

We have relatives who call us regularly, but they only ask about Abeer. I have to constantly remind their grandfather, that he has three grandsons – but he keeps going back to asking only about Abeer. I know he is working on it, but I feel bad that this is something that has to be worked on. At parties, lunches, dinners, Abeer runs around making friends with everyone. Anvay, ends up getting largely ignored. Few, if any, people come by to talk to him. If they did, they would see he has a beautiful smile and will give you a high five if you ask.

And these are not just my individual experiences. I am not writing this blog to vent. This is a widespread phenomenon. Every single parent of a child with special needs would have gone through a similar or worse experience regardless of countries or cultures. And this number is not small. If you do a google search, you will see that around 10% of the world’s population has some disability. It is the world’s largest minority group. And I didn’t even need these statistics to figure this out. Until I started writing about Anvay, I had no idea just how many people in my immediate circle had children with special needs. They reached out to me after reading my blog.

I have a young cousin who is visually impaired. His mother, my aunt, says that social exclusion is the hardest. While he is provided with basic rights like the opportunity to go to school, relevant materials, a special educator, but what breaks her heart is how he gets left out of social groups. How often he ends up eating lunch alone or does not get enough invites to birthday parties. She even says she has released expectations from the children in her family – when they know he can’t see, she wonders why they don’t come to him, talk to him and tell him what is happening. She is now teaching him to deal with rejection and avoidance at all levels, to help him become strong.

Being a member of many special needs support groups on Facebook, I keep coming across agonized parents, hurt or angry at how their children get treated. They could be invisible or for that matter ignored. Or even persecuted. Recently a mother of a teenage girl lamented that she did not know what to do for her daughter’s birthday. She couldn’t have a party, because no one would come and that would hurt her daughter’s feelings. Another mother once wrote about how hurt she was when her best friend invited her younger son for her child’s party but expressed her inability to invite the older, special needs child. Another parent talked about how her family was not being invited for an all family getaway and she suspected it was probably because of her special needs child. Another parent received an anonymous letter requesting her to keep her special needs daughter away from their children.

Ellen Stumbo, an active blogger talks about how her daughter with Down’s Syndrome was turned away from a dance class. Or Carissa from the United States talks about how her son Isaac, who is severely intellectually disabled becomes a tag along with his cousins, how his birthdays are forgotten or how he gets pushed to the sidelines in extra curricular activities. Another mother, Caiti is nervous before the start of every school year – wondering how her son will be treated in the new class.

Then of course there are strangers who stare, come across and ask weird questions. There are those who may treat you like the plague and ask their children to stay away.

Sometimes, this could even work the other way around, trying to be over protective could actually backfire. I have a friend whose son is unable to walk. He attended a regular school but got really mollycoddled by his teachers being the only disabled child in his school. This is love – but the reason he was given all this love was because of his disability. The child figured that and like any other child used this to his benefit and the teachers could not be strict with him. By the end of the academic year, his parents were asked to withdraw him from the school as they felt unable to discipline and teach him. But this is another case of disability coming before ability. Had they looked beyond his disability, they would have disciplined him as they did the other children.

I can carry on with many more examples, but the question is how do we address this exclusion? Are people even aware that their behaviour is discriminating? Or do they not care? My friend analyses this very well, “I have understood that there are three categories of people – the first, those who are naturally sensitive, second, those who have not been exposed to disability and do not know how to react and the third, who probably just don’t care or have a very negative notion of disability.”

I think she is bang on and hope that perhaps most people fall in the second category. I mentioned my family above – I know they all love us and I love them back. They would never do anything intentionally to hurt me or my family. Perhaps they just need to realise. And be willing to make that extra effort to overcome their awkwardness.

As a parent, I know I am my child’s best advocate, and it is my job to make people understand. It is my job to create awareness and sensitivity. It is my job to fight for his rights.

Being inclusive is simple. You just need the right intent. Remember to –

Accept – the first step to being inclusive is to accept. Accept people of different abilities in your attitude, speech, and actions. Talk respectfully and behave respectfully.
Understand – people with special needs are humans too – their disability should not come before their ability. They are complex individuals with emotions, needs and wants. Just like us.
Communicate – someone who is different, is just that – different. Like you and I are from each other. Their difference should not set us apart – you can communicate with them with your eyes, words and hands.
Empathise – understand how a special needs person may feel. Don’t sympathise, do not pity. No one needs that. Share and connect.
Educate yourself – have a special needs person or parent around you? Don’t make your assumptions about them – talk and understand. Ask questions. Do not feel awkward – everyone can tell the difference between genuine concern and general curiosity.
Raise an inclusive child – teach your child to be accepting of differences and diversity. They will be a better person for it.

Being inclusive is not difficult. Despite the challenges, there are some bright days. When Carissa’s older son Aidan, asked her to let Isaac be part of his school band, she hesitated, having seen him sidelined so many times. She went to the performance expecting Isaac to be the runner boy, but literally bawled to see him play the percussion with the rest of the team, having a GREAT time!

Inclusion is easy. As my young cousin Arijeet points out. “Inclusion means treating someone very different from you, just like any other human on earth (that’s what we all have in common). Talking with them, showing what you do, the games you play or the books your read are things that you can do to make a slightly different friend welcome and the same as you!”. He is happy to have found his set of friends who understand him and stand by him.

I will use Arijeet’s words as my parting shot. “My message would be to break the iceberg of difference between you and any peer, disabled or not, smart or dumb, short and thin or tall and fat with abs or not and make them melt into your warm friendship like water!”

Remember, just like you and me, special needs people deserve love, friendship and kindness. Let’s make this world a little more inclusive, a little more happy.

Please share this message and I look forward to your thoughts.

I Am Very Sorry – I Gave It My All. The Tough Path of Entrepreneurship.

“I have failed as an entrepreneur”. “I gave it my all – I am very sorry.” It was gut wrenching to read these words in the last letter V.G. Siddhartha wrote to his Board and employees before taking the decision to end his life. It was unbelievable that the creator of one of India’s most famous coffee brands considered himself a failure.

This letter and his consequent suicide resonated deep inside me – perhaps because I was brought up by two entrepreneurs and also married one. I grew up seeing and observing my parents’ struggles and stand right behind my husband during his tough times.

Entrepreneurship is a very hyped word today – with many governments and development institutions putting their might behind supporting entrepreneurs. But by no means is this an easy road. The road may have unexpected twists and turns, dead ends and roadblocks. The funding you need may never come through or the customer may take too long to pay. Government policies may change unannounced or the economy may start to slide just as your business has started picking up. Labour or employees may be looking for a raise when there is already a downward pressure on your margins. Or perhaps the sales projections you had made were too ambitious and now you have sunk in a lot of borrowed funds with no way to repay them. And your investors are tired of waiting for their returns. Sounds like a scary scenario, doesn’t it? Scary but highly likely that an entrepreneur will face at least one or more of these on his/her road to building (or not) a viable business.

More than institutional support and funding, an entrepreneur needs an unbreakable spirit and a tough make of mind. “when the going gets tough, the tough get going.” As Talish, Lawyer and partner at her own law firm puts it, “Forget the glamour and the fun stories, this is a journey not for the faint hearted. The highs are high, the lows heart stopping and the burden back breaking.”

I decided to speak to some of my entrepreneur friends and see what they have learnt through the years – the mistakes they made and the challenges they faced. I didn’t realise I was in for a surprise. Despite speaking to entrepreneurs from fields as diverse as financial services consulting to event management to water proofing solutions, the key learnings that came out of them were strikingly similar. Sharing their insights, in the hope that this would encourage anyone who might be in need of encouragement today. Here goes:

Be ready to be the founder director and the peon of your company: I remember my mum always used to say that when you are running your own ship, you may have to do everything starting with sweeping your own floor. Architect Stuti echoes the same thought. She remembers the time she and her husband Vibhor were setting up their office and couldn’t afford a fully staffed office. They were the copier, the admin, the accountant and the HR. “Managing so many roles at the same time and then doing your actual work can be exhausting and is not an easy task.”

Getting the first few clients is not easy: This goes without saying. And is even more relevant if you are young and as Stuti says “without enough grey in your hair!”. Age is often equated with experience and therefore quality too. The first few assignments are key, and it is important to do the job right. Design entrepreneur Kapil agrees – “our first client was one of the biggest in the industry and once we proved our worth to them, it was much easier building relationships with other buyers.”

Sales do NOT mean profits: I know it is the sales figures that really pump up our adrenaline. But in the joy of increasing your sales – do NOT forget that your objective is profits and not sales. If your sales are growing by 10% every year but the costs by 15% – perhaps you need to look at your costs. And right when you start out – it is important to decide how long you will give your business to make profit. In most businesses a three-year horizon is good enough – and if you are not making money even after three years, you need to take a hard look at your business model and see where you are going wrong.

Debt is a double-edged sword: Liquidity crunch is a constant companion for most entrepreneurs. Even if sales are good and so are profits, you may face cash crunch in your peak season. Debt is the easy answer but how much you borrow and from where becomes very important. Too much debt in a loss scenario or a low growth scenario worsens the problem. A lesson that event manager Varun learnt the hard way. He had already set up two successful businesses in jewelry and event management, when a friend suggested they invest in a property for weddings and provide end to end solutions. They each put in significant funds and Varun ended up borrowing 3 times his net worth. The business did well in its first year, but they were stopped in their tracks when a govt drive sealed their property and they had to close their business. To pay off his debts, Varun had to sell of one of his other properties and take a loan on another. His tip, “Know your limits – do not go beyond what you can reasonably service. Also have a proper plan for managing your risks.”

Shobhit, founder Tallbird Employment Innovations, seconds this. He was just out of college when he started his business. He had his own education loans to repay and had also taken loans for his start up. When his start up failed to take off, he struggled financially and took loans from friends. He defaulted on his education loans and had to appear in court. Finally, when the personal and financial stress became too much to handle, he reached out to his family and funders and told them it is not working, and he will eventually pay them back slowly. His advice would be to borrow from the right places initially and keep investors fully informed of the risks of failure. And if there are prior liabilities and loans to pay, have a plan in place and do not compromise on that.

Act FAST in an impending slowdown: As an entrepreneur it is extremely important to spot a slowdown when it is coming. Be prepared for there is a slew of hard decisions you may have to take. Many entrepreneurs hesitate to cut down on costs (read staff and assets) in the beginning of a slowdown. They go on as normal, hoping that things would pick up. In small set ups, workforce is like your family and laying off is never an easy decision. However, a delay in taking such decisions only makes the situation worse.

Deepak, founder of M2i Consulting, recalls the year 2010 when the microfinance industry went through a major crisis. It took him and his partners Atul and Rahul to realise the full impact of the crisis and another few months to start laying off their staff. I asked him how they felt letting go of their staff. He conceded it was tough, but went on to say that they tried to find alternate employment for the staff and continue to remain in touch with most of them.

I remember talking to another entrepreneur years ago, who after his industry hit a crisis just could not scale down his operations, but after a while there was not choice for him but to let go. He had to bring in an outside investor who anyway scaled down and he ended up losing a lot of his equity in the company. Kapil also admits that it took him a year to realise that the slowdown in his industry is there to stay and finally started to scale down his operations.

Diversify if possible: “Don’t put all your eggs in one basket”. An oft repeated phrase but always relevant. Deepak and his partners had just started to stabilize their business when their industry took a hit. As their clients felt the impact of the crisis, business started to dry up. Even committed assignments did not come through. They started exploring their contacts in Africa, also started providing services beyond the microfinance sector. By the time the microfinance industry picked up again, M2i had expanded to Africa and started different services catering other development sector clients.

Believe in yourself but also know your limits: A strong belief in one’s ability, one’s idea is required if you start on the path of entrepreneurship. However, at the same time, you need to be able to evaluate your own skills and shortcomings objectively. “You know what you can or cannot do – no one else can tell you that”, says Sandeep who has a water proofing business. After having established a strong business in 2003 – he found himself incurring a loss of 2crs in 2011. How? At the behest of a friend, he had decided to expand his business in 2011 and increased his workforce from 5 people to 28 in a matter of three months. However, within a few months he started losing money. He realized he couldn’t manage the larger workforce. But he also knew when to get out. Before the end of the year, he scaled back to his original size and is now happy with the steady flow of business and made a conscious choice to not grow too much.

Entrepreneurship is a lonely road, but keep your friends and mentors around you: Almost every entrepreneur I spoke to, talked about keeping a close circle of people around you. They are the safety net that catches you when you fall. As Talish says, “the most striking feature is the loneliness of being an entrepreneur – from the first landmark success to a silly error – each journey is unique and inevitably alone and self-driven. Self-care becomes the first casualty.” She goes on to say that she identified a group of people and sought them out to be her mentors. At the toughest times of her life, they have helped her reflect and think through issues; some have even walked with her to the finish line. When her 6 year old daughter was battling a rare disease in the hospital, it was a mentor who held her hand. And when she miraculously survived, another mentor helped her come out of the trauma.

Shobhit believes in having a support group that you can share your problems with. They can not only calm you down, but also provide the bird’s eye perspective that you may be missing, being in the middle of the action. Similarly, Deepak believes that having a group of close friends helps. Share with them your problems and feelings. You never know, you may chance upon and out of the box solution. He also advised against hiding your troubles from you family – because you simply cannot! They will find out anyhow! Despite what you may think, they will understand and become your pillars of support. Varun seconds that – after losing all his savings, he started getting into a depression. It was his family that stood by him and helped him restart. Kapil agrees wholeheartedly, “At my lowest points I have turned to my family and they have always been there to support.”

Be passionate, but do not take failure personally: Last but not the least, be passionate about your work but not to the extent of losing your objectivity. It is important to realise the difference between, “My Business Failed” and “I Failed”. There may be a number of reasons your business did not succeed – internal and external but blaming yourself will not lead you anywhere. A failed business is an opportunity to learn. The best that we can do is to learn from our mistakes and start at the beginning – whether as an employee or an employer.

Shobhit decided to close his business and take up a job. According to him, “It is important to know when to quit – sometimes we get so emotionally involved in an idea, it works negatively for us.” However, the experience and network gained at his start up continues to help him and has helped him grow personally and professionally.

Varun on the other hand continues to be an entrepreneur. He reestablished his event management company and is busy rebuilding his network and relationships.

Both struggled and faced failures and are stronger people today.

Remember, the failure of a business is not the end – it is an opportunity for you to pick up yourself and start walking again – perhaps down a new road.

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Do share this post if you liked it and let me know what you think. Follow/ subscribe to my blog if you would like to keep reading what I have to say.

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And finally my thanks to all the entrepreneurs who shared their experiences, because:

#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.

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.

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.

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.

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!

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!

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.

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.

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.

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 10^th 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.

#inspiringwomen: “Breaking down was not an option: I had to carry on for my son”

It’s been four years, but the evening is still fresh in my mind. Arnav was home playing with Ayushman, when a neighbor came by and told me Ayushman’s father is seriously ill. Kapil rushed out to assist and I ran out a little later with emergency medication for a heart attack. Downstairs, I found Ayaan slumped in a wheelchair surrounded by neighbours. Surprisingly, the doctor not only refused the medicine but even the suggestion to take him to a reputable private hospital nearby. He just recommended we take him to the nearest local hospital. I didn’t know it was already too late to do anything for Ayaan.

Soon after, Kapil called me to the hospital. I was tasked with breaking the news to Antara, Ayaan’s wife. His cousin did not have the courage to do that. I didn’t think I had either.

I don’t know how a woman is supposed to respond to her husband’s untimely death. Will she cry? Scream? Collapse? Faint? I don’t know. Antara took the news without any reaction. Her first sentence was, “How will I tell Ayushman, He is so close to his father. He is only six”. From that day to now, I have never seen her cry. She has hidden her grief and tried to keep life as normal as possible for her son. This year Ayushman will turn 11.

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I asked Antara with trepidation if she would like to share her story with the world, not sure if she would be willing to share a loss as personal as this. But she took the challenge. As she has, these last four years. I worried if she will break down sharing her story. But she didn’t – just as these last four years.

Antara was born and brought up in Kolkata, had a happy, uneventful childhood. An only child, she preferred being on her own and had select but close friends. Her parents gave her the freedom to be – her mum wanted to work, but could not, so she always encouraged Antara to be independent, have a career. Her dad was busy with work and mom dominated all household decisions, like all Bengali households, she laughingly tells me. That open upbringing and a strong mother figure, made her into the strong woman she is today, not afraid to deal with life on her own terms. The foundation laid by her parents, is what has helped her get through the hard reality of life she faces every day.

She met Ayaan while doing a two-year course in computer programming and coding. They became friends and were part of the same group. While Antara was reserved, Ayaan was her total opposite. Outspoken and friendly, Ayaan made friends easily.

They started dating only after both started their jobs. After finishing their studies, they kept in touch and slowly an unsaid bond developed. Antara says there was never really any proper proposal. They both grew into the relationship and neither had to formally ask the other. Ayaan moved to Delhi for work and Antara followed a year later, when they got married.

Ayaan was an ambitious, hardworking young man. As Antara says, he was self-made – he got through most of his education on the back scholarships he earned. He wanted to make sure they had their own house before having a child. They both worked hard to achieve that goal and shifted into their new house, three months before their baby was born.

“Though he never mentioned, I think Ayaan was not very close to his mother. However, he really cherished the relationship he had with his father.” Perhaps to compensate for the fractured relationship, Ayaan loved his son to the hilt. No wish went unattended, Ayaan showered Ayushman with toys, gifts and most of all his time. The two developed a very close relationship and Antara feels that Ayushman is probably still not as close to her as he was to his father. The threesome loved holidaying and spent some cherished vacations together. But time was short.

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9^th April 2014. Antara had a job interview and Ayaan offered to drive her to the venue. On the way back, he complained of a slight pain in the chest. Shrugging it off as a gastric issue, he came back home and took some medication. When he didn’t feel better till evening, they decided to go to a doctor and Ayaan went to change. Antara was in another room, when she heard a strange gurgle followed by a thud. She ran to the room and found Ayaan lying on the floor, unconscious. She screamed.

Too soon it was all over. He was declared ‘brought dead’ – and was no more a person. Ayaan had become a ‘body’. The hospital could not release ‘the body’ till a post mortem was done to find cause of death. A police report was required.

And in the middle of all this was Antara. Surrounded by women – mostly neighbours – no mother – no sister – no friend. No one she could lean on and cry with. So she just held everything in. Steeled herself to go through all the processes.

Antara had decided to take Ayushman for the cremation. A psychiatrist told her that it was important for Ayushman to understand his father was no more. We all collected at the Lodhi Road crematorium where we waited for Ayaan’s parents to arrive. They reached soon after we did, and I will not forget the cries of a woman who has lost a young son. Crazed by grief, she was in stark contrast to Antara’s composure. Two women who loved the same man, bound and separated by his death.

She broke down once again, when they laid her son on the ground. In her grief, she wanted Ayushman to touch and feel his father for one last time. The little child, not seven yet, froze with fear. Unable to comprehend what was going on around him, he wanted to run. I took him away with me, holding him, playing with him while the last rites were being completed.

Ayaan had been very popular and loved wherever he went. Many of his friends surrounded Antara and helped her with all the arrangements, the paperwork, the post mortem. But they all also had to get back to their own lives. One by one they left. And Antara was left alone to pick up the pieces of a life that once was.

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Kapil turned 40 last December. The exact same day Ayaan would have turned 40 too. I remember feeling that death had prowled our corridors that fateful day and took Ayaan finding him home. Even now I shudder at how close by death had been. I am once again reminded how important is each moment lived. And how lives can change in a minute. Here one minute and gone another.

I am reminded of Sheryl Sandberg, who lost her husband a month after Antara did. She wrote on her FB, “I think when tragedy occurs, it presents a choice. You can give in to the void, the emptiness that fills your heart, your lungs, constricts your ability to think or even breathe. Or you can try to find meaning.”

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As we talk, I tell her how amazed I have been with her self-control. She says she doesn’t know where it came from. Even her mother says she had no idea how brave her daughter was. As far as Antara is concerned, she knew she had to be strong for her son. She did not show her grief, so her son could retain a sense of normality.

She remembers the evening of the cremation. When she came back home, it was empty. Silent. Her mum had not come yet and Ayushman was with us. She just sat down in the drawing room, soaking in the silence. The cacophony inside and the chaos outside needed to be silenced so she could think. But even then, she did not cry.

When her mum came, she allowed herself to grieve a little, but something still held her back. A close friend called from the U.S. and she was crying on the phone. Antara did not. Her friend told her she needed help and advised her to see a psychiatrist. Antara is glad she took her advice. The first time she really let go of her emotions was with the psychiatrist. Perhaps, it is easier to be vulnerable in front of a stranger.

Till almost a year ago, Antara would suddenly go blank, in the middle of things. But she has been getting better. For almost nine months after Ayaan was gone, she could not bring herself to go out and resume working. (I wonder how she even had the energy to get out from the bed every morning.) But life doesn’t give us so much time. There was a house to run, home loans, Ayushman’s fees to be paid. Some people even advised her to move Ayushman to a cheaper school, but Antara chose not to. She wanted things to run the same way.

With the help of her mum, who moved in with her, she restored normalcy to life. Four years down the line, life is not ideal, but they are happy. Ayushman is a cheerful young boy. They go out for vacations. They celebrate festivals. She goes out with her friends. She is living her life.

Antara says she has matured as a person. She was very emotional earlier – could get upset at small things, now she learns to ignore such incidents. She was also a very carefree person, “I didn’t even buy a packet of milk – Ayaan would do all that.” Now of course she has the responsibility of running the whole house.

They have almost lost touch with Ayaan’s family, but she holds no grudges, “I don’t expect anything from anyone anymore. I just believe in carrying out my own responsibility.” “I have also learnt, that money is important. It may not be everything, but it is needed to live a life.” She worries about Ayushman, “What if something happens to me?”. She has heavily insured herself. But now she reads the small script carefully. Four years later, she is still submitting papers for Ayaan’s insurance claims.

Have you ever thought of remarrying, I ask. “No. I am content. I have already led a happy married life and I don’t feel the need.”

“And I miss him so much……………………………”

Do share this if you think it can inspire someone.

#InspiringWomen: A Pioneer, An Entrepreneur – She Built Lives Not Only Institutions

Today is the international Women’s day and we will hear/ read stories of many exemplary women, high achievers in their respective fields. It is important to acknowledge the great work and achievements of these women. In a world that still does not offer equal opportunity or a level playing field to women, recognition of those who have crossed many barriers to reach where they are today is essential.

However, to a common woman, the achiever’s story might well be a benchmark but perhaps not an example she would be able to follow easily. Most of us common people look at the people on top with longing but never assuming that we can reach those levels. This is where it becomes important to look at women around us – women who have faced issues similar to ours, fought the same battles, maybe even worse than ours and came out a winner. When we see them overcome the challenges life threw their way, we believe we can do that too. We can also achieve, overcome, overthrow, win. As I wrote a few months ago – I have been shaped by the women around me.

For this women’s day, I have decided to bring out the stories of everyday women, women like ourselves who have made the best of their circumstances. By being true to themselves they tell us we can do it too. They have overcome grief, physical hardship, disability, poverty and built institutions. They are us. We are them.

Like the Navratans (9 jewels), I have chosen nine women whose stories I would like to share over the next few weeks. Whether it is Anita, born in poverty and thrown out of her house or Tara, the only female doctor in small town Rewari of the 1950s or Joyce who lost her only child, each of them has the power to encourage us, to tell us that nothing is insurmountable.

As I spoke to each of them, a common pattern that emerged was their own mothers or fathers, that shaped them to who they have become. So let me also start with the story of my mother. I have not chosen her because she is my mother – but because she was part of the first wave of women entrepreneurs of the 1980s, who started out on their journeys, without any examples they could follow, without formal guidance but only their own skills, confidence and conviction.

So let me stop here and dive into Purnima’s life.

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“The person I am today, is in a large part influenced by how my mother brought me up. Even in 1960s, when women had limited power over their own lives, she wanted to make sure that I was educated and trained to be self dependent. I was given full choice in choosing my career and life partner”, says Purnima. A textile designer by profession, Purnima is one of the handful of women entrepreneurs that existed in the small city of Jaipur of 1980s. She established her own institute that went on to develop a formidable reputation. It is also probably not an exaggeration to say that she pioneered design as a serious career option for a generation of young women that had started to aspire for economic independence and challenging professions.

Soon after moving to Jaipur post marriage, she was approached by a lady wishing to start courses in textile designing for young women. Purnima accepted her offer to develop and conduct the course which soon became very popular. A few years later, however, due to differences with management she resigned from her job.

Given the newness of the design field and lack of quality teachers at the time, some of her students insisted, begged and cajoled her to open her own institution. Moved by their faith in her and their own passion to prove their abilities to the world, she opened the Institute of Designing (IoD) in 1984 out of her own house. The garage became a classroom, the driveway was laid with two large printing tables and the terrace a place where students gathered to discuss and debate. Without any financial backing and with only her own skill and experience, Purnima took a decision that changed the course of her life and the lives of many of her students. (and i guess mine too!)

Keep in mind that this is the Jaipur of late 1970s – early 80s. Like most Indian cities of that time, Jaipur also aspired to greater development and urbanization. Infrastructure was developing, new schools were opening and businesses were growing. The mindsets were however still conservative. Many girls from well off families were still not being educated and many of those that were sent to school, were married off as soon as possible. Girls getting professional education were even lesser and the motivation in a large part was to add to their “sarva gun sampanna” status and make them more eligible for marriage. (photo credit colourbox.com)

The first batch consisted of 7-8 girls which soon grew to 20 plus and then crossed 100s. At its peak, the institute had more than 120 students, many more classrooms had come up on the terrace and classes were conducted in two shifts. The spare room had been converted to the front office.

As garment and fashion industry continued to grow in Jaipur and in India, more courses were added to cater to various needs. Textile designing and printing; fashion designing, garment technology and so on. As NIFT and NID became more popular, designing became a more credible option. Children with a creative flair could now opt for a career more in sync with their talents – instead of having to go for science or commerce. This not only led to a greater demand for the institute, it also ended up in introduction of foundation courses for students who wanted to prepare for NIFT and NID entrance exams.

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By 1990s the institute had developed a strong reputation, so much so that postmen only needed Institute of Designing written on the address to deliver mail. (one of our neighbors got a letter addressed “opposite IOD!!” Another time, when I told a new acquaintance my address, he exclaimed that I live in Purnima Varma’s street! The pride I felt telling him that I am actually her daughter is indescribable!). She even had a few international students to her credit – who came all the way from the U.S. and Japan, lived a year or two in Jaipur to learn the craft. Media also did its bit in recognising her achievements.

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Purnima was very clear that her courses will not be constrained to theory. Well aware that she was creating a skilled workforce that has to go out in the world and work, she laid a huge emphasis on practical work and exposure to industry. Her students did everything from scratch, right from preparing their own dyes to stitching their own designs. They were also given many opportunities to interact with the industry, display their work at exhibitions and fashion shows. One of the exhibitions attracted such a large crowd that the management of Jawahar Kala Kendra (where the exhibition was held) mentioned that this was the first time ever an art exhibition had so many visitors.

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(photo: Maharani Padmini Devi admiring the artwork)

In 1989, Purnima conducted the first ever fashion show in Jaipur. This not only gave a chance to her students to showcase their work, it gave them important lessons in managing such events from scratch. As was practice, the entire event was created and managed by the students and teachers of the institute. The fashion show started with a closed theater in Jaipur and over the years moved on to the large open air theater with the audience going into thousands.

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As a child (later teen), the institute for me was a fascinating ground for growing up (more in a later blog). On a busy day, you could see students busy tying knots on their bandhni designs. On the terrace, a few others could be seen making their screens for printing – painstakingly hammering the fabric on the wooden frame; tracing the design on the fabric and blotting out portions with enamel colour. In another corner you could smell the strong fumes of melted wax where students were dyeing their batik cloths. Upstairs sewing machines hummed amid the chatter of students. During the days leading to fashion shows, there was palpable excitement in the air and music all around as amateur models practiced their catwalk and students busied themselves preparing their costumes.

Through the decades of 1980s, 90s and 2000s, Purnima was witness to the changing social landscape of Jaipur. Some of her earliest students were driven to classes by their drivers who stayed till class ended and took them away soon after. Later in late 1990s, more and more girls started coming on their scooties or kinetics. One year, she had three students from the same family – mother, daughter and daughter in law – all three wanted to explore their selves and become more than just their familial duties. Many of her students went on to take jobs and start their own enterprises. Many came to her under-confident and went out ready to take on the world. A student describes her experience – “When I came to ma’am, I was like Jassi (an underconfident character from a popular TV show) and today I am as confident of myself as I can be.”

Unlike today, when education has become a money minting machine, at that time, an education provider was revered for the learning they imparted. Purnima established the institute to develop confident, mature women able to hold their own in a world, not balanced in their favour. Like a sapphire, she symbolizes honesty, purity and trust and those are the values on which she built her institute.

In her own words, “the best compliment I ever received was – ma’am aadmi banati hain (ma’am builds a person)”. Her life’s mantra – “Be true to yourself and have courage of conviction. Before becoming ‘somebody’, be a good person”.

So when I am in doubt, I think of this woman and tell myself, “if she could achieve all this, why can’t you solve your own little problem”.

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I hope you enjoyed reading this. Please leave your comment and share this story with your friends.

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The Days Go Slowly, The Years Fly By – yes, 2019 is already here

A very close friend used to say this. The days go slowly and the years fly by. So true. It is amazing how every single year, as we approach December, we start to wonder how quickly that year passed, exactly like the ones before this one. Even my eight year old seems to have now become mindful of the passage of time – this time he exclaimed how short 2018 seemed to be. It is one of the blessings of very early childhood when we have no sense of time. After that, life just seems to rush by.

A new year is a time to reflect on the past and look forward to the future. To be honest though – I wasn’t really into much reflecting, till a year or so ago. Either it is old age catching up or just that these last few years have been so densely packed with incidents and emotions that reflection comes naturally.

I had welcomed 2018 with a hope. Having had two difficult years, I was hoping 2018 would be better. But if only wishes were horses…. No sooner had we stepped into 2018, I lost my dad. My being succumbed to the depth of its emotions, and even I was taken by surprise at the extent of my grief. However, I am slowly healing, we all are.

This year can perhaps best be described as my painstaking journey from the depths of despondency to tentative optimism. While I am yet to fully emerge in the sunlight, I can see the first specks of light beyond the dark tunnel I found myself in. A huge help in finding the way has been my writing. I started to blog at the beginning of 2018.

This was a huge step since I am a very private person – and sometimes even find it difficult to acknowledge my own feelings. The decision to blog, and to continue doing that was a significant U turn. So I wasn’t surprised when my sister said somewhat complainingly that I was more comfortable sharing my feelings with the world than her! (But sweetheart you know how much I love you!) Or when a new colleague told me that she didn’t know much about me, except of course my deepest feelings! I guess I have always been better at writing my feelings instead of saying them!

Blogging helped me in more ways than I had imagined. I had started my blog to share our experiences raising Anvay – to give hope and strength to some and in turn hear back from others in a similar situation. However, I soon realized I had much more to share, and how much I loved writing. In a way writing grounded me, provided me with an anchor that I held in the darkest of my moments.

It also introduced me to a different world – of writers. I met new people, attended some writing workshops, made new friends. I am a novice in this field – and it really made a refreshing difference to meet such talented people from a world very different from my own.

Along this road I also discovered Momspresso – a platform that allowed me to share my blogs with many more people. I was able to reach lakhs of readers and the momspresso editorial team was very kind in choosing me as one of their top bloggers of the year and giving me an opportunity to read my blog live to their members. The love and encouragement I received was truly motivating.

And all of you, every single one of you have been important for this journey. There are so many of you who have read each of my blogs, took the time to comment or share. This encouragement matters the world to me. I have been humbled when some of what I felt rang true for you too – several people responded to my blogs about my father – how they shared my pain of losing a parent. A lot of you responded to my blogs on Anvay – some of you shared similar stories – stories of hope, many of you sent prayers. Just knowing that so many of you are with us and care for us was more than enough to give me the energy to continue moving.

While in writing I found an anchor, my work has always been my mainstay, my foundation. Towards the second half of this year, I got the opportunity to work in Central Asian countries. While it was an exciting opportunity, it also meant significant amount of travel. We thought over it and decided that we will manage. Armed with extra support from my mum and spouse and 2 full time helps, the family took the significant decision to take up this challenge. And before I could realise, I was travelling 10-12 days a month. The experience was exhilarating and very very enriching. (more about it in future blogs) It also meant that I did not have much time to dwell on anything besides managing work and family and played a huge role in stabilizing my emotions.

On the whole, 2018 has been a harbinger of change. There have been big shifts and small changes; a big loss and a certain level of triumph over emotions. My blogs perhaps tell the story of the entire year very well and it is only fitting to try and summarise the year through them. The twins are two now and Abeer has reached the next level of brattiness (don’t think that’s a real word – but fits)! Anvay is progressing well and his naughty little personality has started to shine through! His smile makes our day and now we are hoping that he starts to at least stand by the end of 2019! I am more or less at peace with his condition and understanding life much better through this lens. We continue our experiments with our first born – and this year Arnav seems to have become more mature and quite a geek – likes to read anything to do with geography or science – including biology and quantum physics! (he has informed us that the male body’s main purpose is fertilization – though he is still not sure how fertilization actually occurs.). Time to plan his 9th birthday – likely theme is science, no surprises there.

My pregnant tummy hasn’t gone anywhere (obviously, since I have done absolutely nothing about it) – and I am wondering maybe tummy tuck is my redemption? My soulmate however happily lives through the THICK and thin – and maybe secretly happier that I am more like his shape now!! Well that aside, the maid situation has improved and just before I started to travel, I managed to get two good domestic helps – and the sense of peace that brings is more than perhaps meditation could!

2018 has been a kaleidoscope of events and my biggest take away probably is that when you have your family and friends rooting for you, supporting you, you can overcome anything. I have an immensely supportive family starting with my husband and mum (and dad), always standing rock solid behind me. As also are my mother and father in law – ready to step in whenever required and a very loving extended family – both from Kapil’s and my sides. A supportive workplace and colleagues are my added blessings. And with all of you added to my family now – world is a happier place! Love and hugs to all of you. So a happy me welcomes 2019 and looks forward to it!

The Multitasking Woman – You call her Durga …. But is that what she wants…?

… Maybe not. Maybe she will thank you for the appreciation, but chances are that she would prefer you give her a hand, and help free some of hers.

Who is she? She is the ‘modern’ woman, aka multitasker, superwoman, supermom etc. etc. While all these tags appreciate her abilities, she needs more than that. Today’s woman has shown the ability to manage both her house and her work very well (even just managing the house requires multitasking). We have all been reading about how these superwomen are able to multitask – that’s great, but really is that the place the woman wants be in? Is it really that easy? I for one, come under a lot of pressure reading about this super efficient woman – it is almost as if we (the women) are born with this “multitasker program” which can get switched on as and when required. And that it is almost expected for us to juggle everything.

But what about the men? It seems they have begged off this ability to multitask and majority of the dual workload of home and office falls on women. There are articles about how women are better at multitasking than men, who are able to do better when focusing on one thing. Men seem to have been very conveniently let off the hook! Frankly I don’t care if they are good or not. They might as well try and I am sure they will get there! As we all know – practice makes a man perfect!

Men across the world seem to be afflicted by this ‘inability to multitask’, along with the social conditioning that housework is a woman’s job. It is so common in India, to see a woman come back from work and start cooking for everyone, while the husband is more likely to come home and relax. She will also be getting up early to probably cook lunch and breakfast for everyone and likely get the kids ready too. And I have even heard cases where, while the woman wants to hire house help, the in laws or husband would not want an outsider to do these chores! But this is not just in India. In the U.S. a woman laments that since her husband lost her job two years ago, she has been working double shifts to support the house. However, he insists that the baby be put in daycare (which is very expensive), refusing to take care of her at home. In a Central Asian household, a woman returns from work, only to find the house in a mess. When she asks her retired husband, why he couldn’t have cleaned the house, he retorts saying that it is her job. These examples could go on. And across the globe.

I know that more and more men are trying to come up to speed. Many men are taking part in child rearing and helping with chores around the house. But I am not sure if the number of those men is enough, neither am I sure that the amount of work they are putting in is enough. Many men that I know would say that they ‘help’ around the house. The key word is ‘help’. You ‘help’ when it is someone else’s work – implying that the man still believes that it is his wife’s job and he is being a good Samaritan by ‘helping’ her. Perhaps it is fine when the wife is stay and home and takes on primary responsibility of the house – however, when both are working, it is essential that men come out of the ‘helping mode’ and start taking ownership.

Let me dwell a little bit on the help vs ownership model. Think of a project team – there is a manager/ team lead and there are team members. It is the ‘responsibility’ of the manager to plan for the project, divide roles and responsibilities and get the team to execute the project. The team members are ‘supporting or helping’ the manager in that sense. The manager’s primary role is to coordinate and will be doing fewer or probably none of the tasks. What happens with women is that they end up becoming the manager as well as the prime executor with minimal or no outside support. Those of you who would have led a project would appreciate the difficulty of both managing and executing a project. The woman is taking both the mental and physical load of managing the household.

Mental load is best described by a French comic artist Emma. She has brilliantly illustrated this in the comic “You should have asked“. I recommend everyone reads it. When a man expects his partner to ask him to do things, he is viewing her as the manager of their household chores.

A little quiz below to see where you/ your husband figure in sharing the household work:

Who cooks? Who decides what is to be cooked? Who buys the groceries and vegetables and who makes the list? Who manages household help? Who gets heart attacks when the household help takes unannounced leave for 3 days?
Baby is crying. Who picks her up? Who cleans the baby and changes soiled diapers? Who makes sure there are enough diapers and wipes at home? Who washes the nappies? Who hangs them and folds them and ensures there is a supply of dry nappies at home at all times?
Who drops the kid to school/ bus stand? Who picks him up? Who makes sure the uniform is washed and ironed? Who checks his classwork and ensures that homework is done? Who helps with corrections? Who helps with class projects and crafts? Who remembers the date of submission of these class projects? Who is part of the parent WhatsApp group? Who writes diary notes to the teachers and who attends the parent teacher meeting especially if it is on a working day?
Who arranges play dates/ summer holiday classes? Who buys birthday presents for kid’s friends? Who picks out party clothes? Who buys clothes for kids?
Who makes sure that the medicine cabinet is well stocked? Who makes sure everyone is taking their daily medications? Who is managing the vaccination chart of babies? Who takes them to the doctor? Who knows what is to be given for cold vs cough vs fever? Who takes leave when the kids are sick?
Who cleans the refrigerator/ the washing machine/ the dish washer? Who knows when the soap/ shampoo/ toothpaste are finishing? Who gets the dry cleaning done?

If the answers show an unbalanced picture, better to do something now than later. Perhaps the best thing would be to sit down and divide not only chores but areas of responsibility. For example, “I take care of the kids’ homework and you make sure all extra curriculars are taken care of.” “I ensure that plants are watered and you make sure that the ceiling fans are regularly cleaned” etc etc. And then once the work is divided, DO NOT SUPERVISE what is not your responsibility. Women need to let go. Some couples have tried it and here are some examples and here as well.

It is not so difficult if we really put our minds to it. (I hope so!)

So dear men, please start being a part of your household. If you are a lounger, please start with being a helper and then slowly rise up the ranks (like you did in your organisation) to become a co manager. The end result will make you happier than your year end bonus does.

Thanks for reading …. do share your thoughts as well. And if you liked what you read, please follow my blog. Thank you!

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.

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.

(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)

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 neuroplasticity – the 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.

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.