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.

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