Reena paused outside the High Court premises and shut her eyes. Her striking, long eyelashes quivered with trepidation and quandary. This was not her first tryst with a legal institution. Almost a year ago, she had completed her divorce proceedings with mutual consent – mutual for the world and Aman. She had just given in to destiny’s decree. But this time she was prepared to battle her fate with all her might.

This time nothing could deter the unwavering tenacity of a mother who wanted to save her only son from the clutches of a malady that was consuming him day by day, bit by bit.

“3rd September 2012” – The day Reena’s life changed forever! Rishi’s birth brought immense joy and euphoria in the lives of Reena and Aman. He had become the epicentre of their small world and it was sheer bliss raising him through the perks and struggles of parenthood. His first smile, first roll, first giggle and every other milestone were recorded by the doting parents, and the pictures and videos of the tiny tot’s antics were shared enthusiastically with family and friends. From “monthly” birthdays to festivities – there were celebrations galore in the first year. Little did Reena know that all this was to change very soon and clouds of a raging squall were looming large on their seemingly perfect lives.

Days turned to weeks, weeks turned to months and with a blink of an eye, Rishi had turned one. Amidst all the hullabaloo and rhapsody of the special occasion, there was one question almost every guest shot at the unsuspecting parents.

“Rishi has not started walking yet?”

Reena had discussed this with her brother who was a neonatologist and he had mentioned to her that it is normal for babies to start walking after their first birthday, so she did not fret much over the delay in this developmental milestone. But as time passed, panic began to creep inside her, threatening to wobble the core of her being. While all the other kids of Rishi’s age were running around, he was happy to be cocooned in his mother’s lap. There was definitely something amiss as Rishi could crawl and cruise holding on to furniture, but could not take even a single independent step. Reena’s heart broke into a million pieces as she witnessed the deterioration in the well-being of her erstwhile healthy baby. Rishi had begun to lose his appetite and consequently, his weight. Without any further delay, a string of tests were conducted and the results struck Reena and Aman like a bolt of lightning, even though Reena went about it all with a sense of foreboding.

“What is SMA? I have never heard of it. While I was pregnant, during all my scans everything was normal. Then how can Rishi be diagnosed with a life threatening developmental disability? He is only 16 months old. Terminal illness at this age? I…I…”, Reena exploded into tears and was inconsolable.

Reena’s brother was floundered, not knowing what to say. He tried to be as calm as he could and requested Aman to take her home. He assured him that they would discuss the plan of action once they were in the right frame of mind. The first thing that Reena did upon setting her foot inside her apartment was explore the internet for Spinal Muscular Atrophy, even though she was advised against doing so by her brother. What she read completely shattered her. She discovered that it is a genetic impairment which kills 10000 people every year and those who survive lead a distressing mêlée against it. She learnt that SMA is a rare neuro-muscular disorder that comes under the umbrella of Muscular Dystrophy in India. The disorder is caused by a genetic defect and manifests in various degrees. It is progressive in nature, slowly taking away the abilities to sit, swallow and even breathe with growing age.

With every word Reena read online, she felt as though someone was sucking life out of her body to slowly asphyxiate her. Was this really happening? Why Rishi? Would he ever be normal? Would he die? Her mind had become a tangled web of horrid and unnerving thoughts. That night when Rishi snuggled up to her for his slumber with an innocent and impish smile on his face, she felt overwhelmed by a sea of emotions. First, it was the vehement denial and then the fury of being wronged by almighty took over her. She fought back her tears to prevent her sniffles from waking up Rishi. It was the dreariest night of her life.

The same day, Aman had connected with Reena’s parents who immediately took a flight to visit them in Mumbai. Though the next few days were overcast with melancholy, with unflinching support from family, Reena and Aman gradually began to pick up the pieces and realized that they could not afford to let their grief get to them. They had to take charge and do their best to tackle this infirmity head on. They learned that physiotherapy is mandatory for children affected by SMA, hence they commenced with rigorous physiotherapy sessions for Rishi. It was a challenge to get a child that small to co-operate during the sessions but fortunately, they were availing the services of the best in the city. This routine carried on for months and then one fine day, Reena’s brother apprised her about the Cure SMA conference to be held at Washington DC.

Aman had a client visit during the same period which he could not miss and he suggested Reena to travel along with her brother. This was the first incident that drove a wedge between them after a bitter fight ensued upon Aman’s refusal to accompany Reena. He begged to be understood but Reena could not fathom how anything else could be more important to him than their offspring.  With a heavy heart, she embarked on the most crucial journey of her life which she hoped would show them a glimmer of light in the black hole that they were living in.

The Cure SMA conference and her interaction with the community members proved to be much more useful than Reena had anticipated. Of course, there was a lot of valuable information she assimilated about the research that was being done to develop a medicine for the condition and the clinical trials that were being undertaken. But what encouraged her the most was meeting children as well as adults affected by SMA who were leading fulfilling lives. When she began to acquaint herself with everyone present there, it was strange how the introductions followed the “Name and Type” protocol – “Lauren, SMA Type 1”, “Riddhi, SMA Type 2”, “Revathi, SMA Type 3”. It was as if the disease had become an element of the identity of those it had spread its claws on. But, once Reena became a part of the conversations, she realized how a positive outlook can help a great deal in combating the impacts of such illnesses in our daily lives. She recognized that it was not the end of the world and how her succumbing to the pressures of adversity would only do more harm to Rishi. She came back with a resolve to not let her own fears and miseries get passed on to him. She would have to learn to smile for the reason of her existence.

Rishi’s second birthday was a low key affair because tongues had begun to wag in their neighbourhood and Reena did not want all the negativity to ruin the day for him. It had started becoming increasingly difficult to take Rishi to public places like amusement parks and malls. The physical damage of SMA was itself a towering problem to tackle, and now the mental dent caused by it due to the apathy of society was throwing up newer challenges.  While some people would cast sympathetic glares at Rishi, others would cross the line with their obnoxious remarks. While some would bully him due to his condition, others would provide unsolicited advice to Reena making her feel inadequate. Reena craved for normalcy in their lives but life kept reminding her indomitably at every moment that things were not normal. As Rishi was growing, the aftermath of his illness started showing its consequences on him. All this while, it had been about Reena and Aman and how their world had turned topsy-turvy after learning about Rishi’s ailment, but now it was about Rishi. He had begun to comprehend the insensitive words of people, he had begun to sense and perceive their attitude towards him, he had begun to express his anguish on being at the receiving end of sneering jabs and he had begun to convey his frustration at not being able to do all that his friends could do. Reena was anxious thinking about whether this would leave a permanent scar in Rishi’s mind. She did not want his confidence to get marred during his formative years of growth.

Aman’s work schedule was becoming more hectic with every new day that dawned in their lives. He gave it all to his vocation to keep the booty coming in for Rishi’s physiotherapy sessions and other medical expenses. The strain in the relationship between him and Reena was getting deeper by the day till they completely lost their connection with each other. Reena’s scoffs were getting harsher and more vituperative with time. Probably, he had become the venting outlet for her pent up irritation and fatigue of being the primary caregiver of a toddler with special needs. She would snap at him for miniscule matters. Aman tried everything to make the situation better and also consulted a marriage counsellor. When nothing seemed to work, he proposed divorce, ironically at the same place where he had once proposed marriage, and to everyone’s disbelief, Reena agreed for the separation. She knew in her heart that she had reached a point where she could focus all her vigour on either Rishi or on saving her marriage, and she chose the former. Aman had committed to keep on supporting them financially and was more than willing to carry out all his responsibilities towards Rishi. Post their split, he continued to meet them occasionally and also helped in every way possible though Reena was always hesitant in taking any kind of aid from him.

Homeschooling seemed like an obvious choice for Reena when it came to taking a decision on Rishi’s education. There was no school for special kids in close vicinity and even the one which existed a few kilometres away was no good. She had heard stories of the reckless attitude of the staff there and also had read about its low quality standards. This meant Reena had to spend sleepless nights to research about homeschooling and the right way to go about it with a child afflicted with SMA Type 2.

When Reena would hear people say that time flies with kids, she would just flash an empty smile. For her, time crawled and she could feel the pulse of every nanosecond of her life. Her routine came across as mundane to some and onerous to others, but for her it had become a way of life and the only method she knew to plough her path through the labyrinth called motherhood. A significant fraction of her day comprised of Rishi’s nebulization, physical therapy, cough assists, diet planning in close liaison with a nutritionist and chest physiotherapy. This had to be done more austerely when Rishi suffered from bouts of flu and fever. In all this, her favourite moments of the day were when Rishi would sit down to colour. With every stroke, it seemed to her as if he was filling her own life’s canvas with beautiful shades and hues to remind her of its vibrancy. Often, he would request her to read or narrate enthralling tales and anecdotes to him and they both would glide to a mesmerizing world of fantasy.

Reena spent several evenings with Rishi at their window overlooking the park and witnessed the children creating golden memories. She wondered if he would always watch it all as if a movie was playing before him instead of experiencing childhood in its full bloom himself. She wondered if he would ever be able to experience the liberation in running around like a free bird. She wondered if Rishi would ever be able to live a regular life devoid of pity. She wondered if she would be able to instil in him a sense of self-esteem so that he would never feel encumbered because of his disorder. She wondered if she would be able to teach him that the only disability in life is a bad attitude and everything else can be overcome. She wondered if wondering was the only thing that she had left with her as a streak of hope! There were days when she would put on a brave front with Rishi and then there were days when she would break down and snivel like a baby. Rishi would console her in his childlike manner during such times and she would end up sobbing all the more profusely. Once it so happened that Rishi was mocked at by a couple of elder kids in quite a brusque manner inside a mall for not being able to go to the washroom independently. Reena, who was usually patient in responding to children, lost her cool and lashed out at them and their upbringing. It led to a serious altercation between her and their parents later on, and it was Rishi who had held her hand, urging her to peace out. That day she cried hysterically, not because of any other reason, but because she knew that Rishi was being robbed of his childhood. He was supposed to be a tantrum throwing toddler and not the mature child he was turning into.

Over the course of time, Reena had developed a warm and treasured bond with the SMA community whom she considered her family – the SMA family. They were all bound together by the same anguish and ordeal, and understood each other in a way only they could. In December 2016, a dim flicker of hope illuminated the lives of the SMA family members in India. SPINRAZA became the first drug approved by FDA to treat SMA. But, this was not the end; rather this was the beginning of a new crusade.

It was a big day for Reena. It was the first hearing of Public Interest litigation in Delhi High Court to bring the life saving drug SPINRAZA to India for SMA. The price tag on the drug is 5 crores. She never thought one day she would have to attach a value to the life of the most invaluable person in her life. Yes, 5 crores for a precious life!

Author’s Note: August is SMA awareness month. Unfortunately, the awareness around this disease is not as much as it should be. When I learnt that a dear friend’s son suffers from SMA, I got to know what it is exactly about and decided to pen this story. This work of fiction is my humble attempt to do my bit to spread awareness about SMA. I am immensely grateful to my friend, Alpana Sharma, for sharing her daily challenges with me and letting me into their lives as I researched about this subject. A huge salute to her and every other mother who is raising a special child! I cannot even imagine how hard it must be but their determination and positive attitude is hugely inspirational.

//This post was published on Juggernaut Books and is available at the following link. It was chosen among the top 10 stories by Juggernaut Books as a part of their association with “We The Women Asia” event.

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