I don’t want to remember when I set for the journey but it appears to me eternal as if it never started and will go on for ever. My journey with Hiral. It is a journey of agony shared together. Birth after birth! I am a mother who is designed to take care of the carving namely Hiral. Since the moment I realized it I went on and on, never leaving grip of Hiral’s finger. Our souls are together.

Hiral is my second child after a gap of almost 14 years. Ours was a joint family and my young nieces were excited for newborn. There was no problem at all. Though I was very thin, I didn’t have any health problem. Everything went on very smoothly under the supervision of my experienced mother-in-law.

I was little worried thinking the size of the belly was quite protruding compared to the number of months of conception. In the sixth month it appeared like I was carrying eighth month. In the seventh month, I felt nervous and uneasy. I was admitted to hospital. I was under the supervision of experienced doctor all this time. So as such there was nothing to worry. In doctor’s opinion uterus was filled with water. Doctor pumped out the water. I don’t know whether it was a right decision or not but my blood pressure suddenly dropped. Still we did not sense any sort of untoward happening.

I still remember it was raining cats and dogs on that day. Like birth of Krishna. Although I tried to amuse and console my heart, it beeped for some indication, may be misfortune?

Soon after drop in blood pressure doctor decided for forced delivery. The baby born in seventh month of conception is normally weak. It is also said that once baby gains weight, it turns out stronger with improved resistance power than normal child, having fought for life at the outset. Worries of present and thoughts for tomorrow! This is life! We never give up. I was uneasy for the wellbeing of my child. Hiral was born, it was hard to get his heart beats. My wonderful child, tiny, pretty, fare… How to keep him alive! He was placed in incubator, shifted to Masina hospital at Byculla. It was waiting, long waiting, eternal waiting, waiting was going to be my destiny….

Newborn was discharged after 12 days. We brought him home. Relaxed…. For a while… He was named Hiral, he being bright as diamond.

Hiral used to cry incessantly. As if somebody was horrifying him. Children do cry but they also smile and respond. Hiral was our second issue, I had an experience of elder one. His crying was adding to worries. I was totally bound to Hiral. Nobody is amused in the company of a yelling child. We made all sorts of grandmother remedies thinking he might be crying because of gas formation in his stomach. It was very difficult to feed milk to Hiral. He could not swallow the drops of milk in any position. We felt he should have milk, otherwise he will remain hungry and will not stop crying.

We were worried about Hiral’s crying. We kept on consulting doctor. Doctors blew alarm bell when Hiral was 5 month old. We were advised to make investigations in Hinduja Hospital. It was a series of tests and investigations with Hiral. Doctors only knew the terminology and logic of all those investigations. I could sense agony in Hiral’s crying as if he wanted to convey something. What was that? Who will tell us?

Dr Udani of Hinduja Hospital told us the truth of Hiral’s lifetime and our tryst with his destiny. Hiral was diagnosed of Cerebral Palsy, the least known name to us. It had happened during the smallest passage of time at the time of birth, for the smallest fraction of the moment, there was less supply of oxygen to brain, which has damaged his brain. Whatever be the pros and cons of CP, one thing was crystal clear that Hiral was having brain damage which cannot be tackled by normal medicines. We had already set out on the path of agony. His and ours future were going to be difficult. Knowingly or unknowingly I was responsible for his ill health.

There was one more investigation, Hiral’s urine was sent to Japan for some advanced test to reconfirm the diagnosis. We could not draw the picture of Hiral’s physical and mental development. Suddenly clouds shadowed our picture of hopes. How are we going to face this, what are we going to convey to his grandparents that he will not be a normal child, he will not turn, crawl, walk, speak and grow normally. His elder brother was already nervous with Hiral’s disturbing cries, the family members were annoyed. How was I going to appeal to them for their whole hearted support in the hurricane task of in vain efforts to improve Hiral’s condition? What was this, the fruits of wrong doings of past birth? Suddenly I got startled. I was thinking only about myself. Innocent Hiral was under aegis of immense torment. Clowds of desperation hovered over me and I was being dragged into the trap of mental depression.

Now Hiral was put to treatment of Dr Udani in Hinja. The muscle relaxing medicines reduced Hiral’s crying. We had to carry Hiral for therapy in Hinduja twice a week. It was tiring to take him from Mulund to Mahim. We had to wait for long for our turn to come. It was a real test to be patient with Hiral to distract him form crying. The exercise consisted of straigtening his muscles for 20-25 minutes. There was no other alternative to this strenuous ordeal.

Hiral’s father always accompanied me to hospital. He had to look after family’s ancestral business and had a very busy schedule. There was a great support from other family members too. With the tremendous strain and tension I caught bone TB when Hiral was 1 year old. Hiral too was suffering from fever. He used to get afraid of doctor giving him therapy. Therapy was quite painful for him. In addition to routine medicines, he was put on pain killer and sedatives for relaxing muscles. I was advised rest and it was difficult for old mother in law to look after both of us, me and Hiral. My mother took me at her place for treatment and mother in law shouldered Hiral’s responsibility. It was neither possible for her nor could we expect her to continue treatment at Hinduja. All of us were helpless to certain extent.

Me and Hiral got separated due to my ill health. This was a great lesson for me. I resolved to my mind that henceforth there will not be any occasion which will repeat the scenario. I cannot, just cannot afford to fall ill, I can never leave Hiral alone! I shall always have to be at his sides. Since the moment I realized it I went on and on, never leaving grip of Hiral’s finger. Our souls are meant to be together.

Our family expanded and we had to separate as a nuclear family. May be it was for the benefit. May be I could concentrate more on Hiral. Fortunately for Hiral, We got one good assistance in the form of maid Suvarna, who became second mother to Hiral, her daughter showered her affection on Hiral as if he was her real brother. Once resolved, my motto of life zeroed in on Hiral. I followed religious resolution for him. I did not wear footwear continuously for 9 years only to understand at the end of the day that my dedication to Hiral’s wellbeing is true.

Hiral was improving very slowlybut to brighten our hopes to make him upright one day. He started interacting with us by indicating with the index finger. He also uttered first word ‘papa’! We were introduced to a speech therapist Payal, who gave regular coaching to Hiral. She suggested that the medium of instruction be Hindi instead of our mother tongue Gujarati so that Hiral can catch up single language very fast and as Hindi being widely spoken and understood, he will have wide scope of interaction. This yielded results. Hiral displayed confidence. Payal also gave a valuable suggestion. She advised us not to pay attention to his indicative actions to compel him to have verbal interaction.

We placed Hiral at play group for special children near our house to allow him to mingle with children. Hiral was not the one who could stand, walk and do things normally. He lied in the wheelchair. Nevertheless his IQ test showed sparks in him. He was categorized in higher degree of intelligence category. We expressed our desire to put him in normal children’s nursery and very happy to get positive answer. Hiral showed his skill of memorizing things very fast. His facial expressions were worth verbal talk. We were on the way to achieve a first short landmark success in speech therapy by attempting to have maximum verbal interaction with him. Play group and normal nursery played a pivotal role in Hiral’s verbal and expression skills.

Then we admitted him at Ghatkopar’s Shardul school. By now Hiral could recognize pictures of fruits, flowers, colours. He used to respond to nursery rhymes. A normal child’s development comes as a rule. However in Hiral’s case it was like a slow motion movie. Take, retakes, cuts….

We used to momentarily feel ecstatic about Hiral’s progress. But his physical strength and improvement was very low. He could neither hold his neck, nor could sit straight. He did not grow in height and body, his body posture was very poor. He could not even carry himself to move forward. He used to drag his body sweeping the floor when he wanted to move. It was a very pensive sight to see him like that. Therapy continued with no noteworthy effect. Long ordeals of feeding him, bathing him, to be always on his guard…. Whatever knowledge we tried to gather from possible sources did only endorse that there is no possibility of growth beyond certain point.

There was one student at Shardul school. His mother was a maid servant, still she used to take care of him so ardently that I could not just stop praising her for her courage and dedication against all adversities. We had already spent almost five lacs of rupees on Hiral’s treatment, which included Rs 80,000 only on various tests. And this mother was carrying her mantle without anybody’s help, forget about financial stability. She taught me to live and let live.

There was a lady volunteer in this school who was handicapped. Her daughter used to bring her on wheelchair. I was an admirer of her courage. Once, her daughter told that her mother got paralyzed and narrated about the doctor who was treating her and made herself reliant to a large extent. It was quite unbelievable. I could not visualize selfless doctor matching her narration. She persisted to take Hiral to Dr Rajul.

I was fed up with the visits to doctors, therapies, and no assurance not even flimsy one; coming from any end. Ultimately I succumbed to her urge.

In the first instance when we met Dr. Rajul, I felt as if I am experiencing something like dream sequence in the film. The golden words were “Your child will stand and walk!”Which followed thunderstorm “You will have to work hard”. “This lady who do not know about my long ordeal of more than 8 years, how can she comment and show ill confidence in me?” My mind registered immediately. Dr Raul must have sensed my abrupt reaction and consoled saying “this is no comment about your ability but I want to stress upon you that my treatment is totally different.It’s a complete U Turn!’

The conditions are: You will stop all the medicines and therapies from any source other than me. I shall chalk out plan of exercises and you will have to observe the strict schedule to show expected results in pre estimated timeline. I shall plan diet for the child and you will strictly adhere to it. Initially child’s body may resist the new treatment and may show some adverse symptoms. You will not get panic to deter from the treatment. I am confident for my line of treatment as I know child’s body and mind will soon positively respond to the treatment. You will have to break the cycle of child’s total reliance on you and the psyche of his being incapable of that. Initially and forever parents and mainly mother will be the source of inspiration and motivation to the child. They are the partners of his growth. I have an inclusive 360 degrees line of treatment and I shall observe his progress very closely….

They were the firm words and I was moved by the affirmative Dose. I had a glance at Hiral’s face. He was as emotionless as ever. I glanced at Dr Rajul’s face. It was beaming with resolve and expectant to get an equally beaming answer from us. It was a trap of HOPE!

When I said ‘YES’ I was silently weeping, thanking god with apprehensions to send this prophet who may or may not be a savior!

Dr Rajul’s therapy started. Hiral used to catch cough very often and medicine was necessary. Under the new treatment, I was advised to remove the reason for having cough. We were taught to do chest pumping to stimulate lungs for better performance and to pump more oxygen into it. The medicine will consist of medicines prepared at home with medicinal herbs and plants. The diet was planned in such a way which will prevent cough formation.

Till now doctors had advised limited exercises and small operative measures for Hiral. In his young age a small throat muscle operation had been undertaken to enable him to speak besides botox injection in thigh to relax muscles. It only had effectwhich lasted for 6 months. It was not advisable to repeat such injections. Doctors consulted earlier neither had time to discuss pros and cons of their treatment, nor suggest how his routine should be. The line of treatment Dr Rajul was giving was certainly different, having a close eye on his every moment,every movement, and every change! Efforts touching every spot on the 24 hours circle!

Every Sunday there is a common gathering of children receiving Dr Rajul’s guidance. Initially there were 2-3 children, slowly the number increased which necessitated a bigger hall. Dr rajul has a full involvement in every child. Parents are required to video shoot of Child’s performance during exercises and show the same to Dr Rajul during weekly gatherings. She catches the devaiation from the suggested therapy very quickly. The practices of different exercises are shown here. She is very patient in making parents understand and tackling children to make them confident.

During these 3 years, Dr Rajul had succeeded in moulding Hiral’s limbs and to make them aware of their capacity. She has literally sensitized body muscles with different exercises and to stimulate the brain to exercise control on the body which is its main function. Moving ahead, Hiral’s physical growth is phenomenal, his height now congruent with his age. He now takes interest in household activities and gives suggestions in house décor. Now life with Hiral is not one sided affair, it is participatory. Now we don’t serve him, we help him in doing things. His senses sharpened, he found his own personality.

Now Hiral does not have to drag himself on the floor. With little help he makes himself seated in the chair or sofa. He can now sit for quite some time. He likes watching cartoons on TV but not the violent ones. He knows channel surfing. He likes guests and giggles in their company. He now manages alone in house for some time when I need to go out. He can unbolt the door if the bell rings. He has his own mobile phone and although he cannot react fluently, he notes every spoken word of the caller. He awaits eagerly for his father in the evening and father must spend some moments with him. Hiral’s face is very expressive and carries a beautiful smile reflecting his joy to learn new things.

Hiral is now 13 years old. He is studying in First Level of National Open School. Once I did not remember full form of NOS, Hiral was excited to prompt it. His memory is very sharp. He can make calculations, draws and paint pictures. He imitates your words with your gestures and expects the reaction. He gets exhilarated with your appreciation and feels thrilled. He likes people who make fun with him. He is practicing with the alphabets and can make summations.

Hiral won the prize in school for singing the famous song of Amir Khan “PAPA KAHATE HAI”. In Rajul Madam’s session he received a loud applaud. He was very happy.

Recently we made him stand with the help of splints so that knees do not buckle from severe flexion deformity, he danced to the tune of music moving arms and shoulders . This exercise will soon turn into habit. I will see my soul dancing with every step of Hiral.

That day is not far!