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Kavish, A Love Story - Guest Column by Prerna Khanna

January 14, 2019

In our guest column this week, Prerna Khanna shares her early years of raising a child with cerebral palsy.

"These children are born because of the bad deeds of the mother" .

I can never forget these words by a swami who had come to bless our family. He said it in presence of 100 people, all family and close friends. This mixed feeling of pain, guilt, hatred, helplessness and shame was an experience that had become a part of my life after Kavish was born.

Kavish was born with severe cerebral palsy that affected his full body. He is 13 years old today and cannot sit or walk independently. He cannot make use of his hands and is completely dependent. He also has low vision by birth.

But this teenage boy is so full of life. His disability never affected his spirit and as long as I am alive, I will never let it. His disability has taught me great lessons.

I will never forget the night before Kavish was born because there are many times I wonder if things would have been different had I not been so carefree. My husband was away on a business tour, and my mother was out of town. After dinner I felt uneasy and started walking, as advised by the gynecologist. The discomfort only increased, and I woke my in-laws up. The gynecologist said she could do nothing to stop the pain and said I would deliver in about an hour. She also said the babies were too weak to be born healthy.

Tears rolled down my eyes and I remember missing my mum and hubby so much. I was angry with them for leaving me at this time. I remember the gynecologist giving mouth to mouth respiration to Kavish, but the hospital did not have incubators where premature babies could be taken care of.

The gynecologist did not care to call the pediatrician early in the morning though she knew the high risk. I being an educated woman was so ignorant about these important things. Realization came long after damage had been done.

Fighter baby, Fighter mom

Kavish was a fighter and after 22 days was discharged from hospital. At 12 months my brother-in-law felt there was something wrong and we took him to Chandigarh. That was the first time we came to know about his disability. It came as a big shock, but I believed that I would make him OK. We went to the Spastic Society of India in Delhi. We bought a home program where I was required to work with him three times a day, two hours each.

I was suddenly under stress with Kavish always crying during the exercises and not sleeping well at night. This went on for three years. We would go to Delhi every three months, stay a week, get a home program, come back. The worst bit was realizing there was no improvement and feeling guilty for not working hard enough.

I remember my mum cursing me for not taking good care of Kavish, but my father-in-law was most supportive of me. Life had become so hard and I remember I used to lock my room and beat Kavish and myself and cry for hours.

Once we had gone for a social outing with Knavish and I met a child close to his age. She reached out for him and her mother stopped her. This was an awkward moment where I felt so hurt. I couldn't help crying and realized that she had stopped calling me after Kavish's birth. I hated her and her family for being so cruel. I had no fear of talking about Kavish and his disability but realized that people did not want to discuss him, and they avoided me. Maybe I imagined this.

Every other day a distant or close relative or a friend would call to say that they know of some swami who could cure Kavish. I would do everything they asked to find out after months that it was not working. My mother used to keep very tough fasts for his improvement, but nothing worked. Then I started going to an NGO in Ludhiana where I came across the term cerebral palsy for the first time. I started living with one of my cousin's families. I travelled back and forth for about a year and conceived again when Kavish was almost four years old.

Our world was full of happiness as Ruhaan was born, a healthy baby boy.

When Ruhaan was three months old, a doctor in Delhi told me that if Kavish was not able to sit before six years of age he will never be able to sit. I made a decision to move to Delhi where Kavish could get therapy from a professional. No one opposed this as everyone believed Kavish could walk after that. After nine months of rigorous therapy there was no significant change in Kavish, and the therapist said that it could take quite long.

My father-in-law decided to convert our old house to an NGO and bring the therapist and his family to Amritsar. My father-in-law got fully involved in the NGO and its management, collecting funds, spreading awareness, talking to doctors and soon children with disabilities started pouring in from everywhere. We hired three more competent therapists.

I must confess that I did not like to see so many children coming for therapy as this made me insecure about Kavish' s progress. I started taking Kavish for speech therapy where he showed good progress. His speech developed gradually but I realized he had had high myopia since birth and that his optic nerve was very weak which meant Kavish had extremely low vision. All this did not affect Kavish's cognition and his ability to understand things and respond and express himself. Though he could not speak clearly, he was well aware of his surroundings and expressed himself well. I put him in a school, but people could only see his disability and not understand him. I realized the need to explore his intellect and wanted to get trained to educate him.

I enrolled myself in a B.ED. course in special education through distance mode. I did not seek permission from anyone, not even my husband and posted the draft all by myself. Kavish had taught me to take independent decisions without any fear.

Our NGO had become very popular. People started donating heavily, but I did not like anything as so many children were improving, except Kavish. There were mothers who never accompanied their children but there was tremendous improvement. On the other hand, I was working with Kavish for more than six hours a day and working so hard without any change in Kavish.

When Kavish was six years old I decided to shift to Delhi again as his therapy was multimode for eight months and required intensive work. I put Ruhaan in child care close to my house and started with Kavish's therapy. I also used to study and go for interactive classes to the Indian Spinal Injuries Centre for a B.Ed. in special education (cerebral palsy). This was good experience and I would also get to see Kavish and other kids getting special education sessions for hours in the Institute.

Journey to Acceptance

My heart failed to admit that Kavish was not improving. Therapists convinced me there was a change and I believed them. I had no other choice. I extended my program and stayed there for 14 months. Finally, my mum came to Delhi and accused me of ruining my family and husband.

I came back in April 2008 when Kavish was eight years old. I had completed my B.Ed. and started teaching Kavish at home. Then I enrolled him in a KG school, where kids with special needs from our NGO were going. While Kavish was away at school I decided to work with poor children with special needs coming to our NGO for therapy. I started teaching them voluntarily. As I got involved I started enjoying it. Working with these kids was giving me so much joy and satisfaction that it made me overcome my emotions for Kavish' s failure. It was giving me a sense of achievement.

This made me a confident mother and educator.

We formed an association of parents of special needs children in Amritsar. On the internet, I started to explore about disabilities, laws, The National Trust Act, etc.

We started making people aware about their rights and schemes offered by National Trust. We facilitated the issuing of disability certificates to many children and had regular meetings with local authorities to make them aware of our problems.

Once when our children were denied admission by most of the good schools in Amritsar, we approached the district collector who asked the schools to make their facilities disabled-friendly. As a result, our kids were successfully admitted in one of the best schools in Amritsar.

This is my story, my journey towards becoming a better human being.

This is an edited version of an article that first appeared in sharing4good.com

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