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The extraordinary story of Jyotsna, who is a hearing-impaired person, and daughter Anandita, who has cerebral palsy.
Two days after she was born, doctors said Anandita had a rare congenital heart defect. Following post-trauma and prolonged life support that lasted for over three months, she was diagnosed with cerebral palsy.
Like most parents in this situation, Anandita’s parents, Jyotsna and Amit Kumar struggled to cope. But they were clear that disability could not prevail over ability, perseverance, and courage.
Jyotsna, a homemaker and disability rights advocate, is a regular blogger and writes about learning disabilities and about children with special needs. She was diagnosed with a hearing impairment when she was 29 years old.
I hear with the help of hearing aids and lip read as well. Since my family was aware of this, they helped me out by facing me while speaking. Thanks to technology, I am able to connect my hearing aids to my phone using the app. I can hear on the phone and listen to music as well. I do struggle with conversations in groups and outdoors. It affects my daily life but not when it comes to raising my children. – Jyotsna Kumar
The entire family rallied around to support Anandita, including her older sister, who is her biggest pillar of support.
An empowering journey
Anandita’s journey has been a long and challenging one ever since she underwent corrective heart surgery. She has undergone numerous rehabilitation procedures and surgeries to enable independent mobility. Now, she wears ankle-foot orthotics for balance and undergoes therapies – occupational and physical. She has also explored art-based and dance movement therapies. These tools, shares Jyotsna, have enabled Anandita to understand her strengths better.
Anandita, who is in class 12, attends open schooling and has been playing the drums for the last six years. She has even participated in concerts.
“Anandita is a regular young adult who knows her limitations and what she can do best with what she has”, says mom Jyotsna with pride. “Now she is 18 years old, and has come a long way from the prognosis of brain dead”.
What has made the difference is that Jyotsna has always looked at the bigger picture. It’s been a journey of many ups and downs, experiences that Jyotsna believes have helped make Anandita and the family stronger. “I am deeply grateful for these experiences. I wouldn’t be who I am if I hadn’t gone through these challenges”, she says.
Husband Amit calls the journey “exhilarating and challenging”, one that taught him the value of cherishing the simple things. “My wife, regardless of her disability, has overcome all challenges to empower our daughter. To other parents who have a child with special needs, I say never lose hope or faith. Accept the situation and believe in a greater hand that guides and helps you”.
Nandita Paul, who is a Special Educator from Pune, calls Jyotsna an inspiring mentor.
“Her valuable guidance has helped parents from many support groups. Her writing is informative and interesting. She is a true role model.”
Story covered by Newz Hook
