Shrey's History

Some occasions in life are full of optimism and joy. Like child birth. And if the couple is living in all favorable conditions, financially and emotionally, the moment of child birth is eagerly awaited. This new entrant instills  a feel of witnessing the tender offshoots of seed sown deep in the soil spreading its wings to  sunshine. It’s a different feeling all together,  especially for a mother who is indivisible with its offspring and for the father who is curious to be a part of the process. This is one occasion when no negative feeling touches the mind.  It’s the state of emancipation of the soul. 
 
But! There are many BUTs in life! Shrey’s story is one of the Lost and Found game of life! 
 
Myself and Suryaprakash  got married in 1996.  I had studied BA with Sociology and Hindi.  Suryaprakash and his younger brother were into business of computer hardware.  I had keen interest in Fashion Designing and completed one year diploma course in Fashion Designing. Our first baby girl viz. Vidhi was born in 1999.  The life was very smooth. In joint family the relations were very smooth and well aligned. Life was merry and full of satisfaction. I conceived for the second time and it was a welcome news. The baby boy would have completed our family size balance sheet. Everything went on well till 8th month. Regular  checkup  under the able  guidance of doctors of repute at Jaslok Hospital and any ensuing problem or disturbance did never ever glimpse. 
 
But! Destiny has its cat walk ! 
 
Next  day after routine checkup 23 days before the due date, I had a severe  stomach pain and was admitted to hospital and Destiny’s warning bell rang!  We were deaf and unaware of what was in store of us. Doctors felt it and it was a caesarian delivery on 19th August 2005. Shreya was born. His weight was 1.2 k.g at the time of birth, his health was delicate, his lungs were filled with liquid, special care was required to bring his health to normalcy. Initial 5-6 days he was on ventilator in PICU. We were so greatly relieved and thought as if a storm passed by and everything will be alright once the baby is out of PICU. Nobody noticed that baby did not cry and declare its entry.
 
After the initial trauma Shreya was shifted to general ward and mother and baby  were discharged from the hospital after 10 days. Shreya was born on Rakshabandhan and Vidhi was blessed to have a sweet little brother on this auspicious day. Shreya looked like rose bud and we were busy showering extra care on him so that he will gain weight and his health will soon improve. As per doctor’s opinion his birth problems were cured and since there was no problem whatsoever. 
 
But! This was not to be so. Shreya was six months old but his reflexes did not match with that of the growing child.  His attention is drawn when door bell rang but he did not appear to be connected with the people around. I tried to thrash the flashes of apprehensions about Shreya’s growth chart. I used to convince myself with the past experience with Vidhi who too started walking talking little late. But ! Something unforeseen undefined was slowly approaching us.  
 
We took Shreya for regular check up to Jaslok. We showed to child specialist but everybody was of the opinion that he is weak and will improve when his health improves. Thus we concentrated on his health. Although there was not much visible improvement in Shreya, he started turning and in seventh month which gave somewhat relief to us. His little movement gave some solace to us. But that was that.  Slow milestones. We used to take him to child specialist every 15 days only to receive stereotyped reply that his health will improve and ……. “But when will this happen” my voice used to have a pinch of agony while asking. 
 
Defeated by my repeated pranking, doctor ultimately suggested physiotherapy which may strengthen Shreya’s limbs. Thus we approached Jaslok Hospital for  therapy under the guidance of well known physiotherapist. It was one hour, 3 days a week, but practically actual therapy used to get  wound up in almost half an hour. Shreya was  not comfortable with the doctor, he used to cry a lot. I tried to get it done at home. The end result was not encouraging. Shreya was by now completing one year but his presence was not noticeable, neither did he  cry nor could he speak. We  started sensing something abnormal but couldn’t find the one who could tell us what is happening and what is the solution. The days were very depressing. We were  literally  running  from pillar to post in search  for  wellbeing of Shreya. Since October 2006 we tried Ummeed Centre for the physio treatment. Here too Shreya was not comfortable. He used to get frightened of unknown touching him and used to resist a lot. Doctors were concerned with their therapy not with the child’s psyche, they used to get irritated to the extent that she always taunted me for spoiling the child with extra care. I did not have any answer to protest but deep within me a pang emerged… Where was the question of spoiling him, Shreya did not have any demands to fulfill, maybe he was so delicate that he couldn’t stand little too rigorous exercises. 
 
Doctor suggested Botox injections for relaxation of his muscles which we did not concede. We were against the strong medicines which had unknown side effects. For his small illnesses like cough, cold I had recourse to grandmother’s medicines. Inspite of all misgivings we continued with Ummeed  Centre therapy. The only hope was that the little  improvement it had brought will catch pace some day and we shall see Shreya walking, talking. In the meanwhile we also consulted Dr. Udani who was a well  known doctor for such physical retardation. He did not show keen interest only suggested some tests and some medicine. 
 
All the efforts came to a standstill with a frightening seizure, epileptic feet Shrey got on 8th April 2007. He became unconscious for a long time. He was admitted to Jaslok Hospital.   He was given injection and he was asleep. This was first time when doctor commented of some damage to Shreya’s brain. We were helpless and now as if all the moral strength was drained out of our veins. Shrey continued to get seizures initially in the interval of three months, then 2 moths, then 1 months followed by 3 to 4 times a month. We were suppressed under mounting fear of seizures. Let this stop first, we prayed. Neurologist prescribed Encorate 2 ml. Even medicine did not yield favourable result. In the meanwhile we came to know about child development hospital. We admitted Shreya here in hope of the unknown. Doctor appeared to be satirical while in his opinion Shreya MAY or MAY NOT walk! But anyway he will have to be operated and after that maybe he could walk with the help of crutches. What a MAYBE expert’s opinion! How can we believe a doctor who himself is not sure of the result of his treatment!   
 
We were sourcing to all the references, accessing internet, personal suggestions. We were ready to take him abroad for treatment but for how long? It was like a dead end! 
 
One day our family friend visited us as if God sent. When he saw Shreya’s condition he at once informed us about Dr. Rajul Vasa. We immediately took her contact number. Nevertheless we were informed that she  is not easily available. Never  mind ! We contacted her immediately and took her appointment. With the timid heart we awaited meeting Dr. Rajul Vasa. I still remember the day in August 2007. The  appointment was fixed on Sunday. However I had shooting abdominal pain on Saturday evening. I had to be hospitalized and got discharge only on Sunday morning. Due to this we could not reach at 10 a.m. as was fixed. Instead we could reach to meet Madam at 12.00 p.m.
 
Some people  have  very prominent and assuring  personamities  characteristics. Madam Vasa is one of them. Although in first meeting it was only an impression which was to engrave deep into our lives in the years to come.  We met Dr. Rajul Vasa. She investigated Shrey completely and in undoubted words mentioned to us “Shrey will be a near normal child. He can walk if we are ready to do the hard work.” The certainty in her voice was no less than destiny’s utterances.
 
But! But the main condition of hers hovered around putting full stop to all medicines..    Stopping therapies was not a problem. But Medicines! Yes  we had apprehensions as for more than a year Shrey was continuously getting convulsions. At the moment we kept this in black  box and were prepared to obey all the commands of Rajul Madam.  According to madam drugs that suppress activity of growing brain is not in the interest of the child. Madam said in this growing times brain cells connect, reconnect and eliminate cells that fail to connect. If, these activities get affected, it affects child’s overall growth as well. Exercises and therapy suggested by Dr. Rajul had her own exclusive mark. She would teach parents how to get the exercises done and would monitor the same on weekly basis on the basis of videos taken while practicing exercises. In other words, we were made therapist, we have to tackle our child, no question of assigning him to any alien person. 
 
In the initial phases, Shrey used to protest and cry. Exercises were of long duration ad required  lot of patience. While Shrey cried, it was a real test of ours. Seeing Shrey crying his uncle and aunt used to take him away from us! At times I used to get frustrated. But slowly under the guidance of Madam and our will power could instill enthusiasm in Shrey and he started adapting.  Now I understand that the phase of adaptation is the most difficult one and which is absent in any other therapy. The child otherwise is at receiving end which gives impetus to resist on his part. Here in Rajul Madam’s style parents participation slowly convinces child of his well being and he tends to adapt. Once this phase is over and the bond is built, child’s senses start cooperating and enjoying their own development. This had a mesmerizing effect and within a short span of a month our efforts paid! Once he gauged the pace of improvement, there was no back track! It was like a warrior, marching ahead and ahead. Shrey started crawling on his own. As if his brain was a  stimulus  to use his limbs and sense what life is! Stiffness of his limbs relaxed gradually, his close fists opened suggesting he is giving up protest. He required support of his palms while crawling. My senses were so one with him that and I could hear the orchestra of his organs which demanded musical coordination! 
 
Shrey’s diet  was also planned by madam which was supposed to give boost to digestion system and not to any way hinder into his development. Shrey’s progress was not limited only to his physical development as we could witness his brain and senses were actively involved in terms of his reflexes, activity and responses. He started memorizing pictures, acquainting with his people around, remembering and reproducing things taught to him. It was as if he was trying to grasp everything at once what he missed all the time! And wow! He was becoming aggressive day by day! There  were  constant modifications in the exercises. Out of all, sand exercise helped him developing muscles. As his involvement and concentration increased, squint in his eyes reduced drastically. His various exercises during last five years were comparable to text books of one standard up year on year. But the curriculum is flexible to everybody’s need. Not common to all.
 
Now after 5 years of Vasa treatment, we can see our fading dream bright and flaring before us in Shreya’s new avtar. From crawling, sitting straight, balancing himself to stand, he now does not stay at one place even for a minute. As if he always practicing running for Olympics. He is very attached to everybody. He is fond of company and make friends with people. I have taught him sign language. Now with some spoken words and sign language, he can now easily interact with anybody. It’s very joyous to see him doing childlike activities which came to him little late like pull push  doors, to pull out things from cupboard and arrange them again, enjoy cartoons on TV, dance to the tune, to ride on every zoola in the garden. He is now friendly with ABCD and 1,2,3,4… He can now solve puzzles easily for which he used to take 10 minutes earlier. He expresses his joy by jumping, dancing and clapping. He is a community boy now. Because of his friendly nature I can now leave him to play with children or some known company.
 
He was just 4.5 k.g. when we took him to Dr. Rajul. He did have convulsions then. Now there is no trace of it. He is in the process of becoming self reliant. We plan his daily routine and I explain it to Shrey. Shrey takes initiative to fulfill it. We are planning to send him to normal children’s school.
 
LIFE has come to stay home in the form of Shrey.
 
We have seen this day only because of Dr Rajul. It doesn’t end at rekindling Shreya’s and our lives, it is about understanding how to ride the tempest. Shrey is now a perennial source of enthusiasm, but to bring him to this state  we learnt  from Dr Rajul Vasa  selfless dedication which is only comparable to God’s worship. She is working for CP children without any charge. She is always seized of the next step to further every child’s development. She is so minute and deep into her mission that she easily catches any flaw or negligence in exercises or any deviation from her instructions. She is  there like a rock not only for child but for parents too. We are inspired by her. Suryaprakash, Shrey’s father never misses Sunday and shoots all the activities of all the children. They are all like Shreya to us. Our small world has been expanded because of her. I feel proud to guide other parents what I learnt from her. It’s true that adversity reveals genius!

I pray to God that may Dr. Rajul’s garden of good thoughts blossom and remain fragrant with profuse success! And let many more Shreys’ lives be worthwhile examples!   

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