The Unsung hero: A Mumbai mother shares her journey of resilience & love in raising her child with special needs inspires the creation of a centre for children with disabilities
Sejal and her daughter Viha/ Screengrab
Mummy, Maa, Aai, Ammi- these words evoke a certain warmth in one’s heart as reminiscence peaks when they utter them. From memories of crying while bidding adieu on the first day of school to fighting with her and convincing her to do away with anger- everyone has a plethora of such instances with their mother figures. This is precisely why celebrating these supermoms isn't limited to Mother’s Day, they are celebrated for life. One such superhero is Sejal.
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Sejal’s daughter Viha is a child with special needs. “Due to some issues in my pregnancy, I just got a premature baby, and they were a pair of twins, so one could not make it. And since I feel Viha is a fighter, she was in the NICU for 100 days. And after 100 days, when she was held with us, they told us to check all the parameters. And then we came to know that Viha has lost her vision because of retinal detachment due to excess oxygen.” she said.
Parenting is a full-time 24x7 non paying job. But if the child is specially-abled, it becomes even harder. When asked about her journey with her daughter she said, “At the age of five or six years, I felt like taking her to the play school. So then I started going to the Helen Keller Institute and I went there for five years. When Viha was nine years old, they told me that now we needed to move out from this and go to a bigger school where they could help her with vocational training. In South Bombay, I tried one or two centres, but Viha was a challenging kid. Not only because of the vision issue, but she also had other milestones that needed to be achieved. We never found such a school in our area which could help Viha with her daily routine.”
When she couldn't find an appropriate school for her specially challenged daughter, it motivated her to create one. That is how the Mariposa Foundation Centre for multiple disabled children was born. Gradually, Mariposa grew into not only a learning haven for Sejal's daughter Viha but also for other specially challenged kids.
Mariposa not only helps her daughter but other children too with multiple disabilities and other intellectual and developmental disabilities. “Now, Mariposa is almost 14 years old, and we currently have 14 such challenging kids. So basically, we work on their functional skills like eating, dressing, fine motor, and gross motor. We have physiotherapy, occupational therapy, and these kids, you know, they lack sensory integration, where all our five senses work together, they have this coordination lacking in them. So we give a lot of sensory stimulation for them, and we do have other recreations like art and music. Whatever the kids like to do, we are ready to help them.” says Sejal.
When asked to share her memories with her daughter Viha, she gleefully said, “One of my happiest memories with her is when she started saying her first word ‘Papa’. I felt that we were able to finally connect with her as she has partial vision, and we did not know what she was able to understand. But when she said "Papa", I was really happy. That was the best time of my life. Every day, I hope that she will come talk to me, hug me, speak to me, chat with me like a normal kid. It's just like you have hope each day, and it's what makes you go on.”
Sejal also expressed her take on accepting differently-abled people. “I think a mother is a mother; she can handle everything. Accepting a specially challenged kid, for anyone, is tough. Like, you know, Viha is not one to look at you and greet you. From inside, we have a lot of challenges. But frankly speaking, I accepted it very soon. Because I had a positive thought that I just had to keep on doing things. But that hope, that one day she will walk, she will run, and she will see, that was the only thing at the beginning of my life. And now, literally, when I'm growing up, I have accepted who she is, I'm accepting it. But I want her to be happy and healthy for the rest of her life.”
Sejal reflects on her personal growth and learnings in the process of raising Viha and starting Mariposa. She states, “I see a lot of learning at my centre. It feels like I am learning every day when looking at the kids coming, and when each different kid comes, I feel like doing a lot of research for different kids and trying to make all different programs to help them go ahead. For me, even my growing is there in this, my knowledge, and that keeps me passionate, like, you know, I'm learning through experience.”
While this supermom has successfully overcome major adversities on her parenting journey with her positivity, there's also a fear, which seems to be hovering over her optimism. “As a mother especially for a challenging kid, the biggest fear is, what if the mother is no more? Who will take care of my child? It's a very common fear. But, again, that is what makes you weak, that fear and overthinking. So a change of thought process is a must. My faith in God helps me out here. Even if I think and worry, nothing is going to change. I would rather just live and make my life cherished with happy moments. So it's better to think positive and move forward.
When life gets tough, you get tougher. As a mother, Sejal turned her love into inspiration and challenges into motivation to help not only the special kids at her home but also the ones who have no appropriate means to learn. They say love can move mountains. For Sejal, the love for her daughter showed her a purpose for life- moving mountains for specially-abled kids.
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