A Bonding of Souls

“A strong woman knows she has strength enough for the journey, but a woman of strength knows it is in the journey where she will become strong.” – Luke Easter

And this Mother’s Day, we are covering the story of one such strong woman, who is not a biological mother but she has treated her sibling, a special needs person, as no less than her own child.

Fionika Sanghvi, Principal of SPJ Sadhana school for people with special needs shares a unique relationship with her brother Jesal and this relationship has seen many changes over the years. This is a heartfelt and personal narration by Fionika.

According to her, their relationship that was biological, primarily as siblings, gradually moved to being friends. For Fionika, he is a friend who listens, comforts, and accepts her in all moods. She has played myriad roles in his life, sometimes being his teacher, shadowing him through his academic years and now considering herself his caretaker and guardian. Recently Jasel took everyone by surprise on Mother’s Day as he announced that she was his “Godmother.” More than the biological connection, it is the emotional bond that has superseded.

When asked about the challenges faced by her to manage her POD (Person of determination/ person with special needs) sibling, Fionika says she shares a whole array of relations with her special sibling and buddy. It was exciting to have a sibling after many years as they make the best companions. But when she was roped into managing her POD sibling, the first thing that crossed her then teenage mind was ‘Why me?’ and ‘How to manage him?’ as she was ignorant to the term “Down Syndrome.” She went through an emotional turmoil, there was joy mixed with pain, affection laced with fear, she felt care for him but was ignorant to his needs, lastly there was acceptance accompanied by helplessness.

Fionika wholeheartedly supported her brother by dealing with his delayed milestones, varied behaviours, health concerns and watching her parents’ untiring efforts. Seeing them run from pillar to post gradually changed her feelings and her involvement in his development became more intense. She has partnered with her parents and supported them by shouldering the responsibilities. The struggles to make him accomplish his milestones ignited a fire within her to take up the challenge and this sense of responsibility matured her faster.

Her roles have changed over time, she began as an onlooker and then took keen interest in the mediated methods and strategies used for his development. She was overjoyed to see him strive, and every achievement, no matter how delayed, led to celebrations. Being so actively involved in his daily therapy activities, helping him with his education and early intervention activities, crying silently when he struggled, and smiling with him through his achievements, made her determined to take some tough decisions and make lasting commitments.

She chose to study special education. This has been the most meaningful support to him and their parents who didn’t feel alone in this quest, but it became a shared responsibility between them and her. Wearing different hats i.e., playing distinct roles (teacher, sister, friend) and bringing back home techniques of special education and keeping the emotional connect has been essential to balance this relationship with something called ‘tough love.’ This is the magic in their relationship. This journey has been unique with a lot of learning about life and its many hues.

On being asked if her sibling had a role in shaping her personality, Fionika very beautifully said that “We don’t live only for ourselves but when we live for others and with others, it’s then that our life has meaning.” She considers him her inspiration and owes her being to his existence.

She thanks Asian Literary Society for this opportunity to pen down her thoughts about ‘Living with a Person of Determination.’

The journey does not end here. There are many stories untold, watch out the space for another truly inspiring story about a strong woman, who has her own share of struggles and challenges, dealing with a sibling with special needs. Despite roadblocks, she didn’t give up, and matched steps with her sibling as together they marched towards success.

Nisha Tandon