The Special Sister…

Sumona was waiting eagerly for the school van. It was 1PM and her younger child Raj was due to come back from school. She was thrilled at the prospect of knowing how his day was. She wanted to find out all the information from the Ayah whom she used to pay extra for these tidbits. Today too she held a fifty in her hand and her eyes were glued to the entrance of the lane.

Sumona felt a hand on her shoulder. She turned around to see Kamala aunty.

“Oh…hello Aunty, “Sumona said with her eyes back to the road.

“Waiting for little Raj, Sumona?” Aunty asked.

“Ya… actually they are late by 5 minutes…” Sumona sounded worried.

“Don’t worry Sumona, they should be close. You know the traffic these days… Anyways I will take your leave. I am going to get bread. Do you need anything?” Kamala aunty asked.

“No …. It’s ok Aunty...” Sumona replied distractedly. She was now starting to worry.

Sumona had a reason to worry. Her four-year-old son Raj had Down’s syndrome. He was attending a regular school in the nursery section. Her older daughter Ananya was also in the same school in the sixth grade. Raj wasn’t talking fluently as yet. Sumona called the driver repeatedly but the call wasn’t connecting. She called the school and they informed her van was yet to leave today. They had gotten late because of some dance practice for an upcoming event in school. They had apparently messaged the parents. Sumona checked her mobile. There were no messages… the school was still considering Raj tentative? After four months? They hadn’t added her number to their group message system…

Different scenarios came to her mind in the next five minutes. She was in tears. Worried for Raj.

Sumona’s life from the last few years flashed before her eyes. She had a life she had always wanted. A loving husband Rakesh and a cute daughter Ananya. Ananya was a quick learner. Sumona worked in the IT industry and was a team leader in a software company. She had consistently moved up the corporate ladder. Rakesh worked in the pharmaceutical industry. He was the general manager in the company where he worked. Ananya had grown up with nannies and then at the age of two onwards she attended a professional daycare.

She was an achiever from the go. Transition to school was a cakewalk for Ananya. She was not just good in studies but also in dance. Dance was her passion and Sumona and Rakesh saw to it that she got the best training. They even had teachers come home on weekends in addition to the dance class. She was also attending gymnastics to improve her flexibility further. All these cost a lot of money. They lived in a posh locality. Their house was a huge three BHK flat in a high rise. The society boasted of all modern amenities and a huge play area for children. Sumona and Rakesh had loved the place at first sight. The EMI was huge but since them, both had great jobs they went ahead.

All was going great till one day, about five years back… Sumona realized she had skipped her periods. She had been thoroughly stressed at work and felt that must have contributed to the same.

However, within two weeks her worst fears were confirmed. She was pregnant. They had thought their contraceptives were foolproof but they were proved wrong. What followed was a huge emotional turmoil for Sumona. Rakesh and she were not prepared for another child…. They fought almost every day. Rakesh even contemplated terminating the pregnancy but she couldn’t get herself to do it. Her parents were no more and her in-laws were in their village. They refused to help out.

Sumona and Rakesh had an inter-caste marriage. Rakesh hailed from Vijaywada and was from a family of farmers and landowners. Her in-laws had never accepted her. So she didn’t expect any support from them. Sumona had decided to bring up her second child just like Ananya and went ahead with her pregnancy. She worked throughout her antenatal days. She worked extra hard so that she could enjoy her six months maternity leave hassle-free. She even had skipped her obstetrician appointments very often.

Finally on the day of her delivery she had some complications. She had an emergency C -section. She wasn’t conscious. When she came to, she heard soft crying. She turned around to see Rakesh crying silently with his head bent low. She was suddenly worried.

“What is it Rakesh? Where is the baby…?”

Rakesh looked up into her eyes. He looked angry… “I had told you not to have this baby…” he said accusingly.

Sumona was confused and scared… “Where in my baby Rakesh? Is it a boy or a girl?”

 

“He…. It’s a boy. But…” Rakesh looked away.

“But what... Tell me something Rakesh. Where is he?” She was getting agitated and breathing hard.

 

Rakesh came to her and held her hands. “Sumi, our baby is not… not normal. Doctor said…something synd…syndrome. He is now in the NICU. He has trouble breathing. Doctor said something about a hole in the he…heart.”

Sumona started to sob… Just then the room door opened and an eight-year-old Ananya came running in. “Ma… my brother is the cutest baby on earth.” She was beaming. She held her favorite teddy from her childhood. “Ma…I got this for him. Will he like it?”

Sumona hugged her daughter. She was already feeling better now.

 

Soon they took Raj home. From day one it was a struggle. Raj was like a jelly. He could be bent in all ways. Sumona was scared to even hold him. Rakesh plunged himself into work and was barely at home. Sumona was suffering from post-partum depression. In this mess, it was Ananya who spent time with Raj. She helped her with his baths, changing diapers. She sang songs to him and even tried to play with him. Slowly Rakesh too started to show interest. When Raj was five months old he had his heart surgery. It was a taxing time for the family but Ananya was at her chirpy best.

All this while Ananya’s grades never fell. But her dance took a back seat.

 

Raj started to develop better. But he needed therapies. His physiotherapy was taking place almost daily at a private center. Ananya used to visit the sessions every single time.

 

Gradually it was time for Sumona to join back to work. However since she couldn’t keep Raj with nannies, she had to leave her job.

 The loss of her job meant loss of income. They had to heavily cut down on expenditure. The biggest blow was they had to change Ananya’s school to her current one because the fees were very high there. And the final nail in the coffin came when they had to totally stop her dance classes. The ones she attended were expensive and the cheaper ones were not of the mark. Ananya never uttered a word about the changes. Rakesh and Sumona had talked to her about everything and she had accepted everything like a pro. Sumona was at times worried that her daughter had matured way beyond her years.

 

The honking of the van brought her back to the present. A smiling Raj stepped out of the van assisted by the ayah. Sumona gave her the fifty and asked her about his day. She was pained to know that Raj wasn’t selected to perform in any event.

 

Later in the afternoon as Raj slept after lunch, Sumona kept thinking, how she could calm herself. She was agitated. She was tired of seeing people treat Raj like an outcast. Many of her neighbors sneered at him. Some laughed and made fun of him, called him names. But Raj only smiled and went to them. He was such a friendly and smart kid. Ananya’s friends used to come home often and they would play with him for some time. He had learnt so many things from them. If only people gave him an opportunity…

Ananya had taught him to dance. Raj also loved to dance. He was very flexible. He was able to do steps which even typically developing children of his age couldn’t do. But why did his school teachers not give him a chance? Sumona knew it was futile to ask them to involve him. Later that evening when Ananya was back from school, Sumona told her about Raj not been taken in the programs.

Ananya took out Sumona’s phone and asked her to record their performance. She switched on the stereo and it played Raj’s favorite song and they danced together. The number was choreographed by Ananya and she had taught Raj. Sumona’s eyes filled as she saw the performance. She felt awful… Ananya couldn’t pursue her passion and yet she never complained.

Ananya convinced her to upload the video on youtube. Within an hour they had about fifty likes and views.

 Ananya’s friends shared the video with their families. Within a day the video had gained immense popularity. The following day Sumona received a call from the school to arrange Raj’s costume since he was now a participant in a dance number in school. To their surprise, he had picked up the dance with ease.

On the day of the event, Sumona and Rakesh were thrilled to see Raj standing right in the front and he didn’t even need cues. The entire hall roared with a thunderous applause. The school gave him a special performance award.

 

The event was a game-changer for Raj. Everyone around him regarded him with new eyes. There was appreciation all around and he thrived. He even started improving his academic concepts. He now loved learning. Everyone around him tried to teach him something or the other and they were proud of him when he learnt them. Ananya and Raj made a few more videos which were all a hit.

A few years later…

 Sumona was very happy today. Raj was awarded the performer of the day award in his school. He was in the fifth grade in an integrated school, where there were other educable children with special needs. He was now loved and accepted. He was admitted to that school about three years ago and Sumona had started working again. It was difficult getting back and she felt like a fish out of water. But Raj inspired her. If he could be a different fish in the society and stay in the water happily then why not her. She restarted dance class for Ananya who was now in college doing her graduate studies in humanities.

Even today she was Raj’s biggest supporter. She taught dance to Raj even today. Raj had become famous not just in India but abroad as well for his dance moves. He had given quite a few performances choreographed by his sister. She had even arranged a performance of his in her college festival which was appreciated by all. Ananya was approached by other parents of children with special needs to teach them dance and she was considering it after her graduation.

Sumona’s phone pinged getting her out of her reverie. She had received an email from an NGO which worked for the disabled. She was asked to give an interview on her journey with Raj so far.

She had already spoken with them last week and this was a formal invite.

The interview was live in front of an audience. Many of them were parents of children with special needs. Sumona spoke about Raj’s habilitation via therapies and his development so far. She then added, “We consider these children Disabled. But Children like Raj have proved that they are specially abled. They all need an opportunity which itself is a blessing. Raj has been blessed too. He has a very special ability via a very special person. That’s Ananya his guardian angel, a special sister…”

There was not a single eye that wasn’t wet…