Prerna Khanna is a friend of mine, a strong Indian woman. She wasn't always as strong but grew into her own through the birth of her son Kavish, a child with cerebral palsy. This is her story.
" I can never forget these words by a swami who had come to bless our family.He said it in presence of about a hundred 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 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 so is dependent completely for his self-help skills. He also has low vision by birth. The retina of his left eye was detached when he was eight years old and was operated on twice. His good eye (right) has high myopia > -22.
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 of life. If I look back 14 years ago when I was 20 and already married for two years and had completed my graduation after marriage, I was pursuing my career as a freelancer doing software programming but was excited about having a baby. As I conceived I got worried when my gynecologist told me I was carrying twins but after a while everything was more than normal. Not even a simple cold affected my pregnancy. I was active, healthy and took great care of my diet. My gynecologist never advised me to take much rest or never gave me any reasons to worry.
I clearly remember two days before Kavish was born, at my seventh month, I went for a checkup and told of discomfort and a little pain in my stomach. The gynecologist said everything was ok, remain active and walk when there is discomfort as it is probably gas. I will never forget that night because there are hundreds of times I recall if I had not been so carefree things would be different today. My husband was away for a business tour, and my mother had gone out of town to attend a family wedding.After my dinner I felt uneasy and started walking as I remembered my gynecologist's advice.Then I went to sleep alone in my room upstairs but couldnot, as the discomfort had increased but not to the extent that I thought would be necessary to wake up my in-laws. At around 4 a.m. the pain had increased and I woke up my in-laws.My mother-in-law decided that we would go to the hospital at 6 a.m.
My sister-in-law was kidding with me in the car about the whole thing;little did I realize that this was going to change my entire life.As the gynecologist checked me she said she couldn't do anything to stop the pains as it was too late.She said that I was going to deliver the babies in about an hour and she cannot say anything about them as they are too weak to be born healthy.Tears rolled down my eyes as I walked up the stairs to the delivery room.I wished it to be a dream and I remember missing my mum and hubby so much and feeling angry at them leaving me at this time. I remember my 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 that the babies were at high risk.I too being an educated woman was so ignorant about these important things.Realization came long after damage had been done.After my family actually fought with the hospital management to let us shift the babies to another children's hospital which had a proper nursery did the babies start to get proper treatment but we were too late in doing so.The younger baby could not survive for more than 72 hours.
Kavish was a fighter and after 22 days he was discharged from the hospital.I remember the first time I saw Kavish after five days I could not believe my eyes, I thought there was some mistake.I ate such healthy good diet,where did it all go? Anyway all were happy we took good care of him.At six months when he was neither holding his neck, nor sitting independently we expressed our concern to the doctor who said because of prematurity his milestones will be delayed otherwise he is ok.
At 12 months my brother-in-law said there is 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 to me.But I believed that I would make him ok.We went to Spastic Society of India in Delhi.We bought a home program where I was required to work with him for three times a day, two hours each time.I was suddenly under stress as Kavish was crying most of the time while exercising and he did not sleep soundly at night.This went on for three years and we used to go to Delhi every three months,stay there for one week in an apartment,get the home program and come back. The worst part for me was realizing that there was not any improvement and I felt guilty about not working hard enough.
I remember my mum though she has always been a big help whenever I need her, cursing me for not taking good care of Kavish and went to the extent of visiting my house, complaining about my carelessness to my in-laws.My father-in-law was the most supportive and always supported my efforts.Life had become so hard where I remember I used to lock my room and beat Kavish and myself and then cry for hours.
Once I remember we had gone for a social outing and had taken Kavish with us. There I met a good friend who had a child almost Kavish's age. She looked at Kavish and as was reaching towards him but her mother stopped her.That 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 so they avoided talking to me or maybe I imagined it. I am not sure.Every other day any distant or close relative or a friend would call to say that they know of some swami who could cure Kavish. I used to be so stressed up after therapy but would do everything they asked for only to find out after months that it wasn't working.My mother used to keep very hard fasts for his improvement but nothing worked. She was and is the only person I can count on to take good care of my children and she has till date never refused to do so. But she does have her own reasons for doing what she does. Then I started going to an NGO in Ludhiana called ASHIRWAAD 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.
No wonder I was very scared throughout my pregnancy and went ahead and got myself tested for every risk without letting anyone in the family know. I wanted to give birth to a normal baby especially for my husband. I wanted to see him happy as I felt I owed it to him.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 all his life.Then I decided to do anything possible to make it happen.I made a decision that I would start living in Delhi where Kavish could get good therapy by a professional as my working was not doing any good.Noone opposed this decision as everyone believed Kavish could walk after that. At that time I too believed that Kavish could walk one day. I along with Kavish, Ruhaan and a maid rented a two bedroom flat and started living in Delhi .My hubby used to come every fortnight.I used to leave Ruhaan with the maid for a full day and used to go for Kavish' s therapy. I was determined and worked intensely with him even before going to bed each day.
After nine months of rigorous therapy there was no mark able change in Kavish. My family and friends used to ask over the phone" has he started walking?" it was so difficult to answer that and that too over and over again when Kavish had not even started to crawl or sit. 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.We returned back and started working here.My father-in-law got fully involved in the NGO and its management.He collected funds, spread awareness,talked to doctors and children with disabilities started pouring in from everywhere.Soon 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 of Kavish' s progress and therapy time.I also started taking Kavish for speech therapy where he showed good progress. His speech developed gradually but also I got to know that he had had high myopia since birth and that his optic nerve was very weak which meant Kavish had extremely low vision. This was another setback because that meant a big limitation for educating him. But all this could not hide Kavish's cognition and his ability to understand things and respond and express himself.Though he couldnot speak clearly he was well aware of his surrounding and expressed himself well. I put him in a school but could see that people could only see his disability and couldnot understand him.I very well realized the need to explore his intellect and wanted to get trained myself to educate him.
I enrolled myself for B.ED. 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.
The most difficult thing I found when I went for social outings was answering everyone's questions relating to his progress.They had many expectations since all in town knew I had moved to Delhi for his treatment.That was hard as I tried to convince them that there was little progress which they couldn't see.
Our NGO had become very popular. People started donating heavily, but I did not like anything as so many children were improving, few had started walking, others too had achieved some milestone after the therapy, except Kavish. There were mothers who never accompanied their children, were not really working with them, but there was tremendous improvement in their children. On the other hand here I was working with Kavish for more than six hours a day, leaving Ruhaan with the maid and working so hard without any change in Kavish.
When Kavish was 6 years old I attended a workshop where I became aware of a new experimental therapy called hyperbaric oxygen therapy which had proven beneficial for a few kids with cerebral palsy.Though they made clear that it was most beneficial for kids under five years I wanted to give it a try as I was desperate enough to do anything for a slight improvement. I had become more realistic .I remember myself telling the doctor,"I don't expect him to walk; if only you could make him sit independently or eat food with his hands I would consider the therapy to be successful". Then I took a decision to shift again to Delhi as this therapy was multimode for eight months and required intensively working with Kavish.
We again rented a house in Delhi and moved with Ruhaan almost 2.5 years old. Though my mother did not approve of it as she had given up on Kavish and thought I was making my family suffer specially Ruhaan. But I was only thinking about Kavish and his future .I put Ruhaan in child care close to my house and started with Kavish' s therapy. The days were very hectic with taking care of everything singlehandedly.I also used to study and go for interactive classes to Indian Spinal Injuries Centre for B.Ed. in special education (cerebral palsy).That was a good experience.I also used to watch Kavish and other kids getting special education sessions for hours in the Institute.
It might sound strange but I was living and enjoying too, I was working hard and was determined to bring a change; I was learning and gaining confidence of living independently. I was positive all the time. On the weekends I used to take the kids for a drive and explored many good eating outlets. I made a couple of friends and used to meet them occasionally.I also started going out for movies alone and started loving it as this was temporarily bursting my stress.
The kids were missing their dad, their family, but I tried my best to keep them happy. Mum made frequent trips to support me but my Dad was alone here so she couldn't stay for long.I also want to mention that in Amritsar I've never had to cook or do other household chores as we always had helpers to take care of these things but in Delhi though I had a maid I was doing everything myself.
My heart failed to admit that Kavish was not improving. Therapists convinced me there was change and I believed them. I had no other choice. After a while I remember I had become so sensitive about this that I used to fight with my family for hours over the phone convincing them about Kavish's improvement. Actually I didn't want to go back to people with sympathy,queries,feeling sorry for me.I was afraid to go back as I was answerable to them.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 for my craziness for Kavish.
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 kindergarten 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 and soon I was taking them out for picnics, pizza hut, movies.They had become my life.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,our laws, The National Trust Act,etc...We started making people aware about their rights and schemes offered by National Trust. We facilitated in issuing disability certificates to many children.We had regular meetings with local authorities and made them aware of our problems.We also invited professionals working in the field of rehabilitation for doing workshops with our Association.We conducted BADTE KADAM for two years,an awareness campaign by National Trust.
Once our children with special needs were denied admissions by most of the good schools in Amritsar and we approached the DC of Amritsar who called for a meeting and asked them to make their schools disabled friendly.As a result our kids were successfully admitted in one of the best schools in Amritsar.
Recently we have opened a special school along with Sarv siksha abhiyan and will soon add a residential section to it.
At the end I can only express my gratitude to God for everything because if I've cried a thousand times I've laughed a thousand times. He didn't let me give up or lose hope. He gave me the strength to fight every battle and is still empowering me with every turn. He has provided me the right kind of support that I need for Kavish and I believe that he has already planned for Kavish just like everyone else but only made me shortsighted.
Blessed is the family of a child with special needs as they get the opportunity to learn such important lessons of life and value it.
This is my story, my journey towards becoming a better human being."