Mario Emmanuel

“Every Life has a Value”

Its been a long time that I wanted to dedicate this page to my son Mario Emmanuel. I have been thinking so much about him that I never made a start; today while looking at some of his beautiful pictures - I felt that I am not going to wait to write a perfect post, but just start writing whatever comes to my mind.  The purpose of writing this page is to share and relive some of my valuable experiences and learning from this child who was an Angel in my life. 

Emmanuel - one month old

When I went for my first trimester check up to the Gynecologist a wonderful doctor from our city, Dr Evita Fernandez. She looked at my scan report and told me that this could be a special child and at this point of time we will not be able to identify any issues of the child. Also added to it she also told me that the fetus is  so small that I might have a natural miscarriage.  I did not know how to handle this information, to know that I have a special child in my womb and I do not know what the child will be like, what kind of problems that child may have is take the unknown path, that gave me fears, anxieties and insecurities, for many days I could not sleep and all the time my focus was on the child in my womb.

The doctor also spoke to David and told us that we have a choice to continue this pregnancy or to do away with it but she will not do the abortion but refer me to another hospital. So we had a choice, being a pro life person it was very difficult for me to take a decision to do away with the child. All sorts of thoughts came to my mind - what if I have a normal child and something happens to the child while growing up and God forbid if the child develops some problems, will I do away with the child ? 

Myself and David prayed as we trusted God and we believed that everything works for good for those who trusted the Lord (Rom. 8:28). Finally we made a decision to continue this pregnancy as the doctors also told that there is no possibility of this child reaching full term. I carried on my pregnancy full term and completed 9th month and dates given were during Christmas week. So we thought that it will be fitting if we name the child Emmanuel if he was a boy; my in laws family being a Marian devotees added Mario to the name Emmanuel. 

I never felt any movement of this child and I had put on lot of weight with swellings in my leg, with under active thyroid, and blood sugar rising up and down. The doctors felt that a C section would be better than the normal birthing, so we chose the date as 8th December 2003 a small little child was born quietly and for a moment I thought it was still born child, and when the doctors just gave a tap on his back, he started crying  and we knew that this child is a fighter who despite all odds survived for the full term.  He was very small weighed only 2.5kgs and was very weak and slept 24 hours and i had to wake him up for his feeds. He was like a feather, never cried, no noise in the house and It was hurting for me to see him so small and weak that I used to get worried for him.

Emmanuel's Baptism - God mother Noemi Nayak

I am grateful for good friends in my life who were kind, and always in touch with me, encouraging me and I even got 3 months of paid leave from my work place. One of my best friend who was always supportive during my pregnancy and was generous with her time, constantly and consistently helped me deal with my fears and anxieties. I was so happy with the kind of support that i wanted her to be my Son's God  mother. 

When I asked her she willingly accepted and we baptized him in our church naming him Mario Emmanuel. Mario is significant for mother Mary, and Emmanuel means "GOD WITH US'.I was so insecure that every time I called out his name; I was reminded that God is with us and He will take care of him. We celebrated his baptism just like we celebrated my daughter's with immediate family and friends. Emmanuel was small and light and he slept all the time, there was no noise because even if he cried his voice was feeble... I was with him 24 by 7 and it was quite stressful for me; for the first 3 months I used to only cry looking at him as he was just sleeping and took very little milk. I was fearing what problems he would develop as he grows. 

The doctors told that they cannot say anything as of now, he has to grow up a little more and suggested a DNA test, which showed one chromosome extra and we were told that he will be a Down syndrome boy and  IQ needs to be done to be able see the level of retardation in him. David was running around with getting the DNA test done and we continued our visits to the doctor and they also found that he had  hole in his heart. 

I shared with my friends about the extra chromosomes and that he was a down syndrome child; and i also started browsing and looking out for information of these children on the Net. I had very good and supportive friends who also sent me a lot of material to understand and be prepared.  I prepared myself for the worst and kept myself constantly updated and also observing him. I found that his developments were delayed as it took  him almost six months to put on some weight and could see and smile. By 3 months normally babies turn on their bed and and support their neck. 

I had to be extremely careful while holding him; there were no sounds, no babbles, no active movement of hands and legs. I followed the immunization schedule and regularly visited the pediatrician. when I told him about Emmanuel that  he is not moving hands and legs  and the progress is slow. I was shocked at the way he reacted, which I can never forget in my life - he told me that these type of kids are painful and they will have some problem or the other and when we knew that he is going to be a special child... why did I continue my pregnancy?  I kept quiet as I did not want to get into an argument with him and justify my choice, he also told me that we don't know when he will walk, it will take a lot of time and we have to be prepared.  Emmanuel took 5 to 6 months to turn on his bed and support his neck.

Luckily Emmanuel did not have a major issue in walking, infact he skipped a milestone:) he never crawled  on his knees, but was just rolling on the ground, and gradually started sitting, kneeling down and tried to stand with whatever support he found at home. He took one and half year to start walking, he started making sounds, I noticed facial expressions of happiness, sadness, upset, angry - he could act out and we could see his behavior. 

I am grateful to my mother in law as she was extremely supportive and helped me during this time, she took care of him and used to give him a good full body oil  massage, and give him daily bath every day after the massage. he started putting on weight and looked cute and I could see a lot of improvement. He got chubby and he face changed and the color of the skin to changed and my daughter loved him, carried him and was close to him. 

20th December, 2022

My daughter Maria Dorothy was like a second mother to him; and loved him so much that she would wash his face, put powder and help him dress up. She enjoyed oiling his hair and combing it neatly and sometimes even styling, and he would just look up smiling and she would ensure that he listen to her instructions.  Both of them bonded well and loved one another's company. She was a big sister ready to fight for him. She used to help him learn to ride his cycle and the moment she came back from her school - she was ready helping him to sit on the tricycle and gently push around, putting his legs on the peddle so while she pushed his legs moved  on. 

I remember one day when she was playing with other children and Emmanuel joined them, he was still struggling to speak - with delayed speech he used actions and joined the children in the neighborhood. In the course of playing one child called Emmanuel  dumb. Dorothy saw what was happening and she went and fought with the other child and brought him back home crying stating that the other child outside is calling my brother dumb. 

The neighboring children were naughty and they used to play with sticks and one small little fellow running round playfully hit Emmanuel with a scale. Emmanuel just stood doing nothing with a smile on his face, Dorothy watched this from the window and brought Emmanuel inside the house and gave him a scale and was teaching him to defend himself by showing the scale to the other child. Emmanuel went out with the scale and started running behind the small child who was so frightened and ran away with his scale never to worry him again. I was watching this and felt amused and happy too. 

I shall keep updating this page as and when I am free... thanks for reading my post.

Dorothy was very attached to Emmanuel and was happy child; waiting to play with her brother as soon as she came back from school, she was so affectionate that she would hug him tight:) and would get scolded by her grandmother and her aunt. She would come and sit with me when I am giving his breakfast and insist that she feeds him with the spoon, he would eat very little as he had problem swallowing because of the narrow passage, she herself being only 5 years want him to eat full spoon so I  would discourage her from feeding him, afraid that he might get choked. she would like to teach whatever she learnt in the school and he would just stare at her as he was delayed in speech, he would just smile or give a blank stare..watching their interactions was fun. 

Along the way she was also feeling left out; as so much attention was given to Emmanuel. He was just opposite to her, she would finish everything fast like brushing her teeth, having bath, complete her breakfast and ready to school. Emmanuel would take a lot of time and I had to slow down with him which was also very challenging as I had to be on time at my work place, thankfully I had kind people in my life, who gave me the space to reach a little late, and somehow I would compensate on the time by working  little extra in the evening.  

It was challenging for me to manage both the kids, despite having living in a joint family, my mother in law, brother in law and sister in law were also with us. It was a blessing that I was well supported  and could work because I had a family back home and I knew that my kids were in safe space and would get everything on time - specially their meals. With Emmanuel I felt insecure as I was not sure how he would be handled as he was not speaking, infact he would just sit quiet even if he was thirsty, he would not ask for water or food, but just sit sadly. So between me and David we would come regularly taking turns in the afternoon to just see whether he has had his lunch and rest in the afternoon. Dorothy would be in school till 3.30p.m. 

I felt Dorothy was getting sidelined as everything was decided based on Emmanuel's health. As he was constantly sick and every month one visit to the doctor was mandatory. He was prone for respiratory infections and a lot depended on the weather. hence we would never go out, even to the church I would take him when the sun was up and for the late service.  He was happy to come to the church as he loved to see the other kids, and he was fascinated by the music. 

The Telugu service choir used to be lively, with key board, drums and loud singing - Emmanuel was musical oriented and would just start swinging and dance to the tunes. Dorothy would get embarrassed and angry at him as he would invite attention from the others who are in the church. She would hold him tight, admonish him and force him to fold hands in reverence and make him sit. I would be amused to see him happy and and also see Dorothy disciplining her brother. 

Somehow even now I feel Dorothy was deprived of outings, going to playgrounds, dance classes, outstation trips and even picnics and some fun...yet I love Dorothy for being extremely understanding, mature and accommodating. I recall an incident once when we went out for Christmas mass to a different church and decided to have breakfast in a restaurant. We wore new clothes being the festival, Emmanuel wore a black suit (which was gifted by one of my friends from US) Dorothy wore a ghagra and was very happy as we don't generally go out as a family, as the extended family was always with us. This was the first time and we ordered whatever each of us wanted - For Emmanuel I ordered Idli and rest of us went with Dosa and Upma. I made Emmanuel sit next to Dorothy so that they could be together(otherwise he would sit with me). Emmanuel was not used to coming out in public places due to his health issues, we were protective about him. 

As it was Christmas we felt he must also learn to move around with us and socialize. All of us ate and Emmanuel appeared okay. I could not understand and after a little while I found he has urinated in  his pants and Dorothy 's new ghagra was completely wet on one side. I felt bad for my kids and the waiters were kind so we did not have any problem in the restaurant - but I felt bad for Dorothy, so I apologized with her and I could never forget her response, she told me "Its okay mamma- he is my brother" And he is nervous and she held his hand and made him sit next to her in the auto. I was touched by her response and can never forget this incident; I could not forget this incident for so many years, even now when I think about it I get emotional and grateful at the same time for Dorothy, she is a special gift to me who always stood by her brother and assisted me in everything. She is a blessing in my life......there is so much more to write....

To be continued..... Thanks for reading my post, appreciate your time..

10 March, 2024

I have been busy with so many things to handle especially after my PhD I continued my academics in taking up a PG Course in Philosophy as I was always fascinated by western as well as Indian philosophy, so I got busy and completed first year course and this year I will complete the final year.  Today I relaxed and thought of continuing to write about Emmanuel and how he has transformed my life completely. 

Emmanuel skipped a milestone, he never crawled like the other babies - I found it very strange that despite his delayed developments, he was able to sit and used to push himself sitting trying to move around:) it was funny to watch him work so hard for every milestone. . Once he started walking it was so much fun as he was running around the house, in the compound, pulling down things, and when the garbage vehicle would come every morning to pick up the trash, he would hear the sound and just run taking the garbage from the kitchen. 

The whole family was happy with Emmanuel;s new development, some days I found him standing the mirror and trying to comb his hair, other days he would just take Sunday dresses and wear, and would attempt to powder his face and in the process not just his face, but his hair, shirt, pant and even the surface would be filled with powder. He would give a sweet smile and then a tight hug that I could not do any thing but clear up the mess and start smiling. He learnt to go to the toilet on his own and learnt to flush; he was very particular that if he had the slightest sensation, he would run to the toilet even if it means middle of the night. 

Though we kept a small chair potty for him so that when he feels like in the night he could use it, but he never used it in the night but rather run inside the toilet and enjoyed playing in the water, the bucket would be overflowing as he would wash his hands with soap and keep pouring water, and his dress would get wet. Either me or David would run behind him to help him out and bring him back to bed. 

Every night I would make the bed for both of them Dorothy would want to sleep on one side and Emmanuel would want to sleep on the other side. Both would want to hold me tight and push one another to come closest to me. It use to be so much fun, as my daughter would be typical elder sister and would tell him move so that she has a comfortable place:) Emmanuel would just give her looks, no verbal communication but just push her to the side. Sometimes even before I complete my kitchen work he would run into the bed room and start arranging pillows, bed sheets for us to sleep. I would be so tired by the end of the day but I made it a habit to pray over both my kids and rest secure knowing that the Lord will lead us to deal with every new day. 

My social life came to complete halt as i had time only for managing home, my work and two kids. I had to make a lot of changes in my routine, and started thinking of changing my career. My only concern was Emmanuel - I only kept thinking of him as I knew Dorothy would manage herself and it would be unfair on my part to shift responsibility of Emmanuel to her. I told David that we must do something to ensure that Emmanuel is secure in all ways, especially in terms of financial health. With the kind of situation we would not want him to be at the mercy of any institution of any person - as we have observed how children with special needs are treated. We felt that Emmanuel should suffer for his basic necessities in life, so David decided that he will make his pension on his name as he is a dependent child. So he went to Bangalore to get all the paper work done and ensured that he has some security in terms of monthly income. 

I was keen that he learn the basic life skills and also send him to school so that he will be equipped to read and write  so began my journey of searching for a special school.  First I approached my daughters school and i told the management that i am not interested in report card, and all i want is that Emmanuel attends school and sit with age group children. My intention was that if he starts moving around with the normal kids, they will influence his behavior and both the brother and sister will be in the same school. But the management refused to give him admission stating that they have no provision to handle special children.

I decided to put him in a play school which is just close to my residence, 5 minutes walk for us so that he can just go play and come home. We took admission and paid the annual fee, bought the uniform, bag, tiffin box, water bottle, small towel, hand kercheif and told the management that we just want him to play and come back we are not looking at academics at this moment. 

Luckily we had a elderly lady who worked in the school and she was in charge to help children with whatever they needed, whether they needed break time, she would be there help them with water, open and close the tiffin box, ensure that they are all seated in rows while eating and creating trouble for the teacher. My mother in law knew her so we requested and told her to keep an eye on Emmanuel so that he is no bullied in school.

To be continued........ 

15 March 2024

So began Emmanuel's new milestone of going to school every day as it was only was play where he would go there and play with whatever facilities was available for small kids. He loved the swing and enjoyed swinging, but the staff there were helpful and they helped him climb the slide and with lot of fear and anxieties he learnt to climb and slide; when he saw other kids doing it he was happy and learnt. He was a passive child and the other children could just push him behind and overtake him; he would just stand with a smile on his face. 

He was a happy child and we were blessed with the kind of staff who understood him and helped him with his snacks and to drink water, for the first few months he was happy to just go and play. And after few hours we would bring him back home in the afternoon. this play school was only for two hours in the morning.  once this academic year was getting over, the school authorities told us that he has to be in LKG as he was slightly taller than other kids. This was a big challenge for us as Emmanuel;'s speech was delayed and  he would just understand the non verbal communication. we had a tough time and finally we agreed that as we are not interested in grades he can just attend the classes with other kids, but there is no pressure on him to perform. We shared the same thing with the management as well as the class teacher - even though they charged us for books - we got a bag for him so he can just color and listen to the teacher teaching in the class. 

Emmanuel went everyday happily, and one day he wanted to go to the wash room, in a play school there were people but here the teachers expected the children to ask and take permission; he was not able to control his bladder and so urinated in the class so he was frightened too even though the teacher did not tell him anything, there was embarrassment on his face. when i went to pick him up, he was made to sit separately. I felt sad and inadequate to handle the situation, thanks be to God I was with my bike so i could quickly make him stand in front on my bike bring him home change, and hugged him.

There was another incident in the class - the teacher was talking and some naughty children were making noises and fighting in the class. The teacher got so angry that she took one big scale and started hitting the two boys who were distracting the class. Emmanuel was sitting behind them and when he saw what was happening in front of him; he got frightened and started crying and moving out of the class. the teacher called the helper to take charge of him and since we lived close by, they called me - I went to check and I understood that even though the teacher did not tell him anything, but he was watching how the other children we beaten he was disturbed and started crying. That was the end of his school - he refused to go, when I took the uniform to get him dressed, his face would change and he would start crying. I felt very bad so i decided to stop him from that school. 

To be continued .....