Monday, 11 March 2019

I loved him so much that I begged him to go...

I loved him so much that I begged him to go...


The Story of Charu Aggarwal

Based in New Delhi, India

Written by Mallika Bhatia


Me and Rahul got married in 2009 after patiently waiting on convincing my parents for a long time. We both wanted to wait till both sides of the parents agreed. It was purely Rahul's trust and effort that finally won them over. For the next few years we were in bliss and we decided to expand our happiness by creating a new life together. I got pregnant in 2013. My pregnancy was textbook perfect. I was hale and hearty, full of energy throughout the pregnancy, no morning sickness, no nausea, nothing, just a happy kicking baby inside me. All the tests and ultrasounds were perfect and we, along with our extended families were really looking forward to the new phase of our lives.

Nine months later, my labor pains started just a day before the due-date given by the doctor. After 24 hours, we had a healthy looking, pink baby in our arms. It was a boy who weighed 3.8 kilograms, a healthy birth weight by all standards. We named him Rushil, the charming one. Celebrations began soon after his birth. It was almost midnight so my mother decided to stay at the hospital. It would give my husband, Rahul some much needed rest. It had been a long day for him too, he had been in the labor room throughout. As most babies do, Rushil had the colostrum, the first feed of mother's milk, and slept blissfully for the next few hours. 

We had to wake him up to feed him again. He had a little milk and vomited out something green a couple of times. The nurse told us that it was just acid reflux, something very normal for newborns. She took him to the NICU (Neonatal ICU) to clean up his stomach and for general observation till he was comfortable. After a couple of hours, he was brought to me again as they had cleaned his stomach and he seemed absolutely calm. I breastfed him again only to see him vomit something green one more time. The doctor and the nurses told me again that it was all normal and took him to the NICU. We were also advised to stay in the hospital for one more day for observation. 



I was asked to pump milk and called in NICU for skin-to-skin and direct feed while Rushil had started exploring his new surroundings. Rahul kept peeping in NICU to see if Rushil was sleeping or awake. All seemed normal until on one such trip to NICU, Rahul sensed something wasn't right. It was late evening and the NICU incharge had been called back from home. She informed Rahul to wait back in the room and that she would speak to us soon. A very anxious half an hour later, she walked into our room and informed us that there was indeed something wrong with our baby. They did not know what it was yet but knew that he was losing blood as he was becoming pale. It could have been in the brain, they had suspected. The doctors had to find the source of the blood leak in order to fix it. She told us that she was consulting her colleagues and seniors even in other hospitals. She said she was trying to figure out the next steps and needed our trust and patience.

At around 10.30 p.m. that night, his tiny frame was being taken for an ultrasound followed by a CT scan. All the reports came out normal. Our tiny baby was being pricked every few hours to check his levels of haemoglobin. It kept dropping. He was being pricked for some test or the other and that troubled us parents to no end. The pediatrician told us to rest while she tested Rushil for possible issues throughout the night and yet, not once did we feel that she left our side. By dawn, Rushil’s stomach had started distending, i.e, it had swollen up and he was now in pain if someone tried even to touch his stomach. Our doctor had contacted the pediatric surgeon and requested him to come and see our child. The surgeon said that if the child had passed urine and meconium then all should be well. He did come after insistence.


The surgeon had one look at Rushil and said that he would have to open him up. We now decided to inform both of our parents about the happenings who rushed to the hospital to be with us. They were going to do an exploratory surgery in order to identify what the issue was. Our son was just 3 days old when he had his first surgery. We were obviously nervous wrecks. He was so tiny, so pale and so fragile. We kept hoping and praying that he would be alright during the surgery and the doctors managed to find out what the issue was and were able to fix it. We just wanted to go home with our little baby. Tears and tension went hand in hand.

A few hours later, the surgeon walked out of the operation theatre with a small bowl in his hand. It contained a tiny sausage like thing. The doctor then informed us that our son had a very rare congenital deformity called the Apple peel deformity. Usually there are a web of blood vessels supplying blood to the intestines, in our case, our son had only one such nerve but still his small intestine were fully formed. The only blood vessel supplying blood had got twisted and the blood supply to intestine was hampered. The blood had started flowing inside the intestine turning it gangrenous. More than 70% of his small intestine had to be removed, though the colon, which helps the body absorb liquids was intact. That was the only positive outcome of the surgery. The surgeon informed us that once Rushil recovers from the surgery, we would assess if he could have mother’s milk or would he require special pre-digested formula. He also told us that Rushil might require special pre-digested food throughout his life. His body was not capable of digesting anything on it's own.

We did not know if we should be happy about the doctors finding the source or sad about our child never eating. That evening was when the reality of it hit us, we knew we would never have a normal healthy child. He would have tubes feeding him throughout his life, he would be a regular visitor at the hospital and God knows what other complications along with it. Our neonatologist kept giving us hope. She said let's wait and see how he recovers. She was doing a lot of research of her own to try and find solutions that might work. She was looking into transplants and other options. She also insisted and convinced the surgeon with her findings that no formula can replace the goodness of mother’s milk and that it will in fact help in recovery.

I had been discharged but me and Rahul still spent the whole day in the hospital, waiting for our son to recover from his surgery. Rushil stayed in NICU. We visited him during the day and spent the rest of the time assessing and discussing his condition with the doctors. After around a week, when his stitches had healed and the doctors thought it was safe, we tried to feed him breast milk again. He took the feed hungrily but unfortunately his stomach bloated almost instantly after taking the feed. The surgeon rushed back to check on him. He made an incision on the tiny stomach and the same green liquid/bile started coming out of it, following this the complications just kept increasing every single day. Again a series of tests were conducted which lead us nowhere. The surgeon suspected that his internal stitches had given away and wanted to open Rushil up again but we were vary of it. He was just 16 days old. It was all happening too fast and it was all very difficult to process. Just a week and half before we were celebrating this new life and here we were, a few days later not knowing what to do with it.

We took second and third and a fourth opinion. By now we were told by everyone to stop hoping for his recovery. We did not want our child to turn into a vegetable, we did not want him to suffer so much just for our egocentric love. We could not focus on just keeping him alive when he did not have a life worth living. We knew by then that he would not grow, he would need support and medical intervention all his life and yet he would not be leading a healthy life.

What did we want the end result to be? What were we looking at in the long run? Did a little baby deserve to go through so much physical pain and so many surgeries when we were not sure what would come out of it? We wanted our baby, we wanted him to be healthy and happy but at what cost? There were so many questions in our heads, so many dilemmas. What was the right call to make?? 

Our answer came to us when the surgeon we took the second opinion from explained that his only aim was to keep Rushil alive, if he eats all his life or not was secondary to him. Me and Rahul instantly knew that we could not make such a selfish decision. 

That evening we went to our surgeon's residence to speak to him. He was rather nervous when we walked in. We sat calmly and told him that our prime objective was to relieve Rushil of his pain. If the second surgery would help him then we were ready for it. We told him that we trusted his judgement and wanted him to know that if he was faced with a difficult choice during surgery, then we would trust the choice he would make. We conveyed our faith and also our unfortunate decision about not wanting our child to turn into a vegetable. 


During the second surgery, the doctor found out that it’s not just the stitches but most of the small intestine that had given away. There was almost nothing left and his stomach had just become an open pit. Nothing was left, neither his intestine nor any hope. The doctor stitched back whatever little was left and we were told that all we could do now was palliative care, just to make sure that his death was as pain-free as possible.

We had to accept that he was dying, there was no way of saving him. It was extremely painful to watch him with all those tubes and wires and yet it was the tubes and wires that made acceptance a bit easier for us. He had an IV keeping him as nourished as possible. The doctors and nurses were constantly there with him. As ironic as it sounds, he had so many mothers in the nurses taking care of him, hoping and praying with us. They seemed to be taking care of him like they would do for their own babies. Sometimes we would all cry together. He had become like a family to all of them and they would take turns to hold him and spend time with him in our absence.

Rushil's condition was getting worst and it had actually started affecting the staff emotionally. This had been a forty-day long journey for all of us. 40 days that taught a lot of us much more than we wanted to learn in this lifetime.

Rahul and me together decided to take our baby home. We wanted him to come home, even if it was for a few hours. No one could predict when he would eventually go but everyone agreed that he deserved to be home and loved. The pipes weren't helping. Our wish of taking our new born home was finally being fulfilled. The doctor spoke to us and told us how difficult it was going to be at home, emotionally and physically. Everything would be erratic, unpredictable and draining, both for us and for him, she had said. She tried to prepare us by giving us as much information as possible. She told us that he would slowly starve, he might cry a lot because he would always be hungry and his throat would be dry. One by one his organs would start failing, in what order could not be ascertained and then finally he would literally starve to death.

The next few days were the longest and the shortest days of our lives. We had to make the most of the time we had with Rushil. We would dress him up and have long conversations. He would just look at us with pure love in his eyes. Sometimes he would smile back and respond in his own sweet little baby ways. He would also constantly be hungry and dehydrated. There was nothing we could do about it, just hold his little body while he wailed. We hoped that our love was enough. Till date we aren't sure if it was! He would get tired and sleep. We had to feed him every 20 minutes, just to keep his throat from drying. The milk would go in through the mouth and come straight out from the bottom, almost life pouring something through a pipe. This cycle was repeated every 20 minutes for the next few days. He required 24 hours care and feed and I obviously did not have that much milk supply so we topped it up with formula. Slowly his liver started giving away, he developed jaundice.


Now our conversations with him changed. We started telling him that we were truly sorry but there was nothing we could do for him. We started telling him to go.... We told him repeatedly to not elongate his suffering and, selfishly even ours. We would kiss him with tears in our eyes, hold his little body as close to us as possible. His body did not have enough energy to move on its own, not even a hand or a finger and yet he would look at us with pure love and gave us the sweetest smiles. Like he wanted us to experience the pure bliss of love without saying a word. His schedule started getting more and more erratic, either he would not sleep or he would not wake up for hours. Sometimes he would sleep for 12 hours straight. The doctor told us that this meant his end was near. We would keep checking if he was breathing, that was all we could do.  We were still singing to him, dressing him up and enjoying the little time we had together as a family.

On one Sunday afternoon his breathing became very labored. We called the doctor who told us that it could be a fluid buildup in his lungs. She said she would try to arrange an instrument that could help him breathe better at home. Rahul was holding our tiny baby and standing in the balcony. I came out of the shower and overheard a teary eyed, broken Rahul speaking to our son, begging him to go. I went close to them and held them both. Our little family was so perfect and yet so imperfect right now. We all loved each other and we were all so helpless. We wanted our son but we kept begging him to go away from us. It was all too painful, all too complex. I took Rushil in my arms where he took three or four labored breaths and then stopped breathing completely. 

Our son had decided to listen to us, he was gone. He had left us and this world that could do nothing for him. Just like that Rushil was no more. As we held his lifeless body, we didn't want to believe that the moment we were dreading was finally here. We decided to rush to the hospital, where Rushil was finally declared dead by our doctor. It was like he had to say goodbye to his doctor as well.

Our charming one had charmed his way into so many hearts. There were so many wet eyes that day. He had had a short life and yet in his short life, he gave so much. He made us parents, he got us face-to-face with the different layers of love, he made us go through our worst fears and helped us realise that life still goes on. He made us eternally grateful. 

Rushil was truly gone. He came and went so quickly. Both me and Rahul had a lot of emotions to deal with. We were sad, angry, helpless and relieved. There was so much we had lost that it seemed natural to us to even lose ourselves. It took us more than a year to get used to the emotional pain, I wouldn't say get over because how can a parent ever get over their child! We had to relearn how to live, this time with a constant emotional pain. We grieved, we cried, we healed and became mentally strong. We were sure that we only wanted to focus on ourselves. A lot of people around us wanted us to behave like our child was never born, they got uncomfortable when we talked about Rushil and kept telling us to get over him and try for another child, almost like our baby was replaceable. We had support yet in many ways we were all alone. 

After about one and half years we both decided to go back to the same doctors and talk about having a second child. The doctors had been so supportive and transparent that we could only trust them now. Soon we were pregnant with our second one. This pregnancy was completely the opposite of my first; I was anxious and sick all the time. I had acidity, vomiting, nausea...the works. We were doing several extra detailed tests and our pregnancy was being monitored by a genetic expert this time. Everyday of the pregnancy I had to tell myself that we will face whatever happens. Somedays I told myself that we can't be a second time unlucky. I had medical science backing me up because even though the condition Rushil had was genetic, it could not be predicted and rarely did the same set of parents have the same case repeated. 

Two years and some months later, me and Rahul were in the same hospital with almost the same staff going through labor. Aseem was born the next day. He looked so much like his elder brother when he was born. He is 3 years old now and is the naughtiest child we have ever come across. He seems to be here to receive everything that Rushil gave us. All our love, attention and blessings. Everyday we thank our Rusha for coming back to us. Everyday we count our blessings and live with gratitude.



We decided to share our story because we wanted the world to know that there is pain but there is always hope, it just depends on what we focus on. We want to thank the medical staff who took care of us and made us trust in humanity. We want to thank all our family and friends for being a part of our journey in their own ways and helping us heal. We want to thank you for reading and humbly hope that our story will help you or your loved one in some way.  Like they said, a single thread of hope is still stronger than an entire rope of doubts.



* If you found this story inspiring then don't forget to share, comment, like and subscribe to The Hope Tribe.You can be the instrument of Hope for someone by spreading these inspirational tales. Thanks for reading, Mallika Bhatia, Founder The Hope Tribe

Monday, 21 January 2019

Living with the missing 'X'


Living with the missing 'X'


The story of Sowmya Mohan
Written by Mallika Bhatia
Based all over India


“Your struggle develops your strengths. When you go through hardships and decide not to surrender, that is STRENGTH.” This quote encapsulates the story of my life.

I was born in February 1982 to an Army officer and back then a-future-teacher. My parents fell so deeply in love with my cuteness that the fact that I was short-limbed was simply termed as a tiny baby who would grow big and tall with time. I was their first born and hence got all the attention possible. I am told I was quite intelligent, chirpy and a delight to be around. I had started talking very early and would supposedly even hold long conversations as a toddler. I was the apple of my parents’ eye and loved even in the neighbourhood. Since we were an Army family, we had the great opportunity to live in a new place every two years. Around four and a half years after I was born, came along my brother and our family increased. I had started school by now and my parents started noticing that I wasn’t growing in height in comparison to my peers. I wasn't even as agile as them. It took me much longer to cover the same distance that my friends did effortlessly and quickly. After a few months of observation, when I was around 5 years of age, my parents took me to the local pediatrician. He checked my vitals and simply asked my parents to keep patience. 'Some kids just take longer to grow' he had said.


Photo by Jens Johnsson on Unsplash


My parents of course believed the doctor for that time but something kept bothering them in the back of their heads. When I was around 9 years old and still hadn't grown much, I was taken to the prestigious All India Institute of Medical Sciences (AIIMS) for a detailed check-up. We were stationed at Meerut that time.Together the doctors in Meerut and AIIMS finally diagnosed me with Turner's syndrome.

(Turner syndrome is a chromosomal abnormality in which all or part of one of the X chromosomes is missing or altered. Diagnosis is based on physical signs and genetic testing. No cure for Turner syndrome is known.Read more about it here)

My parents finally had the answers for the questions no parents ever want to ask and I had the huge task of accepting that the bullying that I was facing in school would probably never end. I was always a part of the journey that my parents had undertaken in trying to find the reasons for my lack of height and they made sure that I was a well informed part. The way they conveyed the news of my diagnosis to me was by telling me how lucky I was to be blessed with a brilliant brain and a thinking mind. I was told instead of height, I had immense talent. Instead of talking about what all I would lack in life, I was told about how lucky I was to have an endocrine disorder and yet have the least threatening symptoms/manifestation. Instead of talking about my missing X chromosome, we talked about my blessings as an individual. That formed the base of my personality.

Me in the background with mom and my brother

Just because my parents were supportive did not mean my issues went away or that the world was kind. I had started having thyroid issues and gaining weight very early on. When other children were out playing and running, I had to focus on exercising and eating right. With my stature, it wasn't an easy task. In school the other children had all sorts of nicknames for me. I was called githi, chukti, piddi, all local words derogatorily pointing towards how short I was. The teachers were not far behind. My sports teacher did not let me participate in many games because of a lack of height or because my gait wasn't what was considered 'normal'. They decided that I was not good at sports even before I got a chance to experience playing. I was vehemently discouraged from participating in activities where one had to be on stage. I would look too odd on the stage was the general belief.
In all honesty it was a struggle for me to cope physically with regular activities since I was extremely short limbed, yet my mind worked fine, in fact it worked better than a lot of my peers and yet I was not given a chance to showcase it because of the way I looked.

I clearly recall one incident when I was in 9th grade. It was one of the inter-house debate competitions in school that I really wanted to participate in. The topic was Intelligence 'vs' perseverance. I spent many an evening preparing my content, which I later discussed with my English teacher, who was very impressed by it. When I went to the house mistress with my participation request, she didn't say anything to me but the opportunity was given to another child who would look 'normal' on stage. The decision wasn't based on the content that one would present, it was rather based on how one would look presenting it. I was informed about it by the teacher who was supporting me.

I knew I was capable of representing the 'house' and yet I wasn’t given a chance because of how I looked. I was heartbroken and spoke to my parents about this unfairness. My father chose to come to the school and speak to the head mistress. She listened to my father's concerns and yet did not do anything about it. I was handed the duty to help the other participants in the debate but backstage.

As the topic of the debate was, so were my intentions; I knew perseverance well enough and chose to still go on to the stage at the end of the competition and present my views as a guest speaker. I couldn't give up just because a few adults refused to show sensitivity. I knew I wasn't lesser simply because of my height.

Eventually, I was very happy that I did present my views. My real reward came when a few days later my biology teacher, whom I admired a lot, came up to me and told me how much she admired my views. That was my win.



I did continue to lose out on opportunities and still was bullied but by now I had realized that most people always focused on things that were superficial. It wasn't my loss but theirs. Yet some losses hurt more than the others, I lost out on Prefect ship because the Principal of our school did not find my persona towering enough. I took much longer to learn how to cycle. I still didn't have any great friends while my peers were busy forming their little cliques.

Teenage makes life even tougher than it otherwise is. I could observe the bodies of my schoolmates changing. The girls were growing breasts, the boys had changes in their voices and facial hair. Everyone was busy 'growing up' but me. Girls now had boyfriends and best friends and stories to share and all I had were my academics. I felt left-out, very often. My mind oscillated between acceptance of myself and my condition and falling prey to the social pressures and questioning why I did not look like them?

I tried to fit in, I tried to copy them, I tried to ape as much as I could and yet I was not like them. Since no one wanted to befriend a person who looked 'strange', I did not have anyone to share my pain with. I kept internalizing everything. How it helped me in-turn was that it made my inner resolve much stronger. The difference between the real and superficial became even more clearer.

I now could see how much effort my family had put in to support me and to make me feel absolutely normal. I saw my parents struggle internally but they never let that reflect on to me or my brother. I wanted to tell them that I truly valued what they were doing for me, so I started focussing completely on my academics. I got brilliant results in almost every class and enjoyed economics immensely. After school I went on to do a Bachelor's in Economics followed by and MBA from the prestigious Army Institute of Management, Kolkata. I stayed in a hostel, away from my family for the first time during my Master's. It was a test for all my resolve and upbringing. Thankfully that was another test I passed with flying colours. I enjoyed my experience thoroughly. I was independent and completely responsible for my own self. I knew there was nothing that could stop me now. Over the years I had also made some great friends who loved me for who I was.

Post MBA, I entered the corporate world quite effortlessly. In the professional world, I was judged based on my abilities and intelligence rather than my looks. I am currently working as a Manager for a reputed Multinational company, I feel fulfilled and complete in every respect. The struggles were worth it and helped me in building a sense of faith in oneself.



I want to tell each one of you reading this that it is extremely important to trust oneself and accept who you are. It is equally important to focus on the blessings more than the challenges. When issues come our way, we need to face them as stepping stones rather than hindrances. I am thankful to my parents for letting me be independent and never letting me feel that I lack something. I wish more parents could do that. As they say, the way our parents speak to us becomes our inner voice. I am thankful for such a beautiful inner voice. I might be missing an 'X' but I know that in life, there is nothing I am missing out on.



* If you found this story inspiring then don't forget to share, comment, like and subscribe to The Hope Tribe.You can be the instrument of Hope for someone by spreading these inspirational tales. Thanks for reading, Mallika Bhatia, Founder The Hope Tribe

Wednesday, 26 December 2018


Does your life hold a lesson for someone else?

by Mallika Bhatia


This month's The Hope Tribe feature isn't a story like the other months. It is an appeal, it is a request, it is a command and a tribute. 

For what you may be wondering, let me tell you. 

It is an appeal for you to value your journey, to see the long way you have come and the obstacles you have overcome to make it here. It is an appeal to not undermine your own power and the lessons that you have learnt along your way. Your lessons might help make someone else's journey a bit easier. 

It is a request to see the value in the person you have become, focus on the ways you have changed through the years. Some changes may be subtle, while a few others may be too strong for those around you to handle, but these are the changes that make you who you are. Acknowledge them and be proud of who you have become. 

It is a command to not stop here. If you think overcoming obstacles was all that your struggles meant, think again!! There are so many others going through something similar and they need the guidance and support that you may not have received. You may feel that your journey is unique to you, it is. Yet, our struggles are universal. They are the thread that eventually bind the humankind together. Imagine what it would have felt, just knowing that there are others in similar circumstances as you. Think of how alone you had felt while going through your pain. This is your opportunity to make someone else know that they are not alone in their pain and struggles. There is actual emotional safety in numbers. 

All I am asking you to do it share. Tell me your story and I will share it with others. Write it yourself if you like, give it your name or do it anonymously. Do it anyway you like, what is important is that your story reaches others, for women to know that they are not alone. There is support, there is help and there are others who have come out of their struggles and made it. Show others the light at the end of the tunnel. Like Mick Kremlin said, ' You have not come this far, to only come this far.' 

This piece is also a tribute to all the heroes who shared their stories with us in our first year. I would personally like to thank you for trusting The Hope Tribe as a platform to share your fears, weaknesses, joys and successes. You have made The Hope Tribe possible. My hero, you have helped me achieve my dream of creating platform for awareness and support that is free of cost and available to anyone who is willing to benefit from it. Thank you for trusting yourself and believing that your story is worth sharing. Some of you did need a little convincing but I am so glad you let go off your hesitation and decided to share your life with us anyway. 

This year end feature is also to thank our subscribers and readers. Thank you for reading, sharing and recommending The Hope Tribe to everyone. I truly hope you would continue to do so and help the world become a little bit more compassionate, hopeful and loving. 

So lovely people, trust that your stories are worth sharing, continue to support us and have a superb year ahead full of hope and love. 

Hugs,
Mallika Bhatia, Founder, The Hope Tribe.


Monday, 26 November 2018

It never gets easier, you get stronger: my journey from a non-athlete to a Half Marathon runner


 

It never gets easier, you get stronger: my journey from a non-athlete to a Half Marathon runner

The story of Nidhi Khurana
Written by Nidhi Khurana
Edited by Mallika Bhatia


I want to share with you all my incredibly hard but rewarding experience: the story of my transformation from a non-runner to a half marathon runner in a little more than a year. I still find it hard to believe that a non-athletic girl like me can call herself a 'Runner' now. Until I started running, I had never done any kind of exercise besides a few irregular visits to the gym or sporadic walks with friends. Then one day my friend just mentioned a new fitness challenge that she had taken up. It was to run non-stop for ten minutes. The duration had to be increased everyday till one could run for twenty minutes at a stretch.

I decided to try it even though I wasn't sure if I could do it. Little did I know that those ten minutes would be life changing for me. To mine and my friends surprise, I could run for ten minutes effortlessly and soon I started to run for twenty minutes non-stop. I became a TWENTY MINUTES RUNNER. I wasn't bothered about how much distance I covered or the pace at which I ran, I just ran for twenty minutes everyday.

I continued running for two months and then a new chapter in our lives started. Me and my family moved to Munich for my husband's work. As we were busy making Munich our new home, I stopped my twenty minute runs. Surprisingly I didn't even miss them, maybe because I hadn't done them for long enough to become a habit.

My running journey restarted when a friend introduced me to a Facebook group called Ubermom runners. I know that have said this a million times in last one year and I say it again today that joining the runner group is the best thing that has happened to me in Munich. I saw other moms logging their runs ranging from 1 km to 20 km , they were all equally appreciated for their running efforts by the other group members. The most beautiful thing about this group was that no one ever judged on the basis of pace or distance. Everyone is just applauded for their efforts. The group made me believe that I too, could run and every run would be a good run!!



I was still contemplating about restarting my running but I needed a push. Rather a BIG SHOVE to jump out of my couch and run outdoors in the cold winters of Munich, which was such a contrast from Singapore weather.

On 17th January 2018, one of the moms in the group posted that she wanted to start a 100 day running streak, a 100 day challenge she called it. That was all the motivation I needed and I decided to join her in the streak. I promised to run 4 kilometers everyday for a 100 days straight. I wasn't sure of my capability but I was sure of my commitment. I knew if I take it up, I will complete it.


The first few days I struggled really hard to run 4k, a distance I had never run before. I had to literally force my body and brain to continue running after the first 2 kilometers. Ninety nine percent of me wanted to stop and go home to my warm couch but there was one percent of me that wanted to continue. Thankfully I listened to the one percent.

It was not just physically challenging to run everyday but I also had to be resourceful with how to find an opportunity to run each day. When I knew that I had a busy day ahead, I would choose between an the early morning run before anyone at home was awake or a late night run when my daughter was in bed. I often ran laps around the local playground while my daughter played in the middle. There had been instances when a perfect lazy afternoon with a few drinks at our local Biergarten or a girls night out ended with a run. There were days when I had my period and was very demotivated to run and yet I went out and ran. I was a girl with a motive. Once you commit and believe that you have to do something, you find a way and time to do it.

On Day 65, I ran my first ever 10 Kilometers.

The beauty of this run was that I was running with the mum who had started the 100 day streak. Half way through our run it had  started to snow and yet that didn't stop us. In just two months I could run 10k! Sometime in the middle I caught a severe viral infection and could not stop coughing. My family told me to quit my challenge but how could I. I used to sleep in a separate room so as to not disturb my husband with my coughing but I did not miss a single day of my run for a whole of 100 days.

That is what regular training does to you. It makes you stronger, mentally and physically with each passing day. My biggest accomplishment from completing the streak is that running  has become a part of who I am and I run almost everyday now.

I don't run to add days to my life, I run to add life to my days.'  - Ronald Rook

The next step was the first race of my life, Stadlauf München on 24th June 2018.. I can so vividly remember running those 10k and thinking how far I had come and how amazed I was that I did it. I ran with a few other members of the same Übermom runners group. In a month's time I was again on the race track with my runner group, running the 10k Sommernachtlauf München on 24th July 2018. I was totally hooked!!



Now I had started contemplating a half marathon but was too scared to vocalize it. Soon enough another member of the group, a new runner like me suggested running the Munich Half Marathon in October. A half marathon meant 21 Kilometers. I was so sure that it was impossible to make the leap  from 10k to 21k in such a short time, that I discounted it as an unattainable target.  She said that we could do it as we still had over two months to train. That was all the push I needed. We decided to run the half marathon with a goal of finishing the marathon at our own pace.

Now started the two months of hard training for my first half marathon. I was running almost everyday but the the distance and the time I was running for was much more now. I looked like a lunatic who would run for over two hours at least twice a week. Some of my neighbours who saw me running at the school drop off time around 7:30 am were amazed to see that I was still running when they would step out of their home again around 10am. I was like a machine now and my fuel was running...

Training for my race was not only a physically demanding endeavour, but it was also an emotionally rewarding one. My mantra during the training period which kept me going was: If it was easy, everyone would do it.'

My training was hard on me at many levels I had to change my diet, my habits and my routine. My family had to make sacrifices in their schedule to accommodate my running time, we had to cut short family vacations for my race, I had to give up my beloved junk food. Finding two and half hours for running everyday isn't easy but I never gave myself another choice. After two months of rigorous training I was confident that I had a decent chance of finishing my race well within the time limit of three hours. I was obviously very nervous before the race started but once I had started I enjoyed my run for the first eighteen odd kilometers. The last three kilometers were very difficult though. It was a very hot day and I started feeling sick with the heat. There was a constant battle between my body and mind.

The former said to stop and walk whereas the latter said keep going and finish what you have started. I listened to my mind but was still finding it hard. Around the 19th kilometer I met my racing partner. She reminded me how hard we had worked for it and we had to finish it. She was the much needed motivation I needed at that time when my body had almost given up. I finished my first ever half-marathon in 2 hours, 40 minutes and 16 seconds. I was ecstatic! We both crossed the finish line  holding hands. It was one highest moments of my life!



If someone would have told me a year ago that I would one day run a half marathon, I would have laughed at them. For me running was something 'other's did', never in my wildest dreams would I have thought that I would be a runner. But now, if I don't run for a day I feel that something is missing.

Running helped me feel so many things all at once. It has given me a belief that I can do anything. It has helped me improve my stamina, I feel much stronger and I sleep so much better now. My overall health has improved tremendously and mentally I am more determined. I feel accomplished and motivated to try out new things. Lately I have even carried our heavy duty car tyres when we needed to switch to winter tyres. I do not know if I am deeply in love with running but I do know that I am in a relationship that I can't see ending.

PS: Running is contagious. It runs in our family now!! My 8 year old daughter ran her first race, the Olympic-Alm Crosslauf on the 18th November 2018 and my husband aims to run a 10k soon.


* If you found this story inspiring then don't forget to comment and let the author and the hero know about it. Please also Like, Share and Subscribe to The Hope Tribe.You can be the instrument of Hope for someone by spreading these inspirational tales. Thanks, Mallika Bhatia, Founder The Hope Tribe

Friday, 19 October 2018

Panic Away: My anxiety story

Panic away: My anxiety story


The story of Tamanna Bhasin (Name changed)
Spanning over India and Germany
Written by Mallika Bhatia


After seven years of blissful existence, when I started sensing doom in the eighth, I initially didn't know what to do. I started constantly feeling that something bad is about to happen; someone close to me is going to die, either my parents or me. I feared someone in my family would have an accident or something would happen to my sister. The thoughts were always unpleasant and each represented a fear or spoke of a disaster. After a few weeks of struggle, I decided to share my feelings with my mother. 

She identified my condition early on, having lived with an anxiety based disorder and having experienced panic attacks herself, she knew where I was heading. She took me to a Psychiatrist who put me on a low dose of anti-anxiety medicines. Back home, my mother taught me to meditate. In about ten days everything was back to normal again. I carried on with my happily normal childhood and created some amazing memories. About twelve years later, while I was in college, my anxious thoughts came back. This time I let it pass on their own. I was like any other teenager who thought I knew better and did not seek any help. Thankfully, that phase passed without any visible damage then. 

At about 24 years of age, a year after I had gotten married I started palpitating while at work, I couldn't breath, my head felt heavy, I was dizzy and weak, I couldn't control my body, I was sweating and thought I was about to die. My colleagues witnessed the whole thing and just kept asking if I was OK. I could not answer though I did manage to call my husband and ask him to rush me to the hospital. 



At the hospital I underwent every test possible; blood work, ECG, Urine test and even a CT scan. They found nothing wrong with me. After about six hours, a clinical psychologist came to speak to me and my husband. She declared that I had just suffered a panic attack and needed to start taking regular medication for my anxiety. That was a moment of truth for my husband, who had never acknowledged or understood my anxiety earlier, having known all about it from the beginning. 

We had been in a relationship for eight years before we got married and I had always been honest with him about myself. In the first year of our marriage we had taken a holiday to London during which I was very anxious. I kept talking to him about how uneasy I was but he just ignored what i was saying. He said I was simply exaggerating things in my head and I should stop doing that. He said to me that he believed anxiety to be a simple sign of weakness and an excuse to not work. That's when I stopped sharing anything with him. It obviously affected our marriage a lot. When the psychologist at the hospital gave him my diagnosis a year later, he finally started seeing some truth in my suffering. 

From the hospital, I went straight to my parent's place to recuperate. I had felt extremely unsupported in my own house with a husband who had refused to believe in me. Only when someone else confirmed what I had been saying so long, did he believe it. My mother on the other hand, took care of me like a baby. She made sure I ate nutritious food and rested a lot. She listened to me and supported me emotionally, she even made sure that I never miss my daily meditation. The medicines had begun but usually they take about a month to settle the symptoms. 

Photo by Paul Trienekens on unsplash

I went back to my place after a week to a changed and supportive partner. He had taken this week to understand my condition and learnt that help and support went a long way. He tried his best to be there for me in all the possible ways. I went back to work and requested better timings. I worked in a very high stress media house back then, where there were no fixed schedules or predictability. I was always sleep deprived and had never had enough time to communicate with my husband. On papers I was achieving a lot in my career but I truly did not have a life. 

My medicines were to continue for 3 months and I was also given a SOS, that I could take only before the panic attacks. Unfortunately I needed the SOS medicine every second day. A year went by where I had a panic attack every alternate day and that's when I knew I needed to do something more about my condition. In the past year I depended heavily on emotional eating. Together with the  medicines that made me gained about 10 kilograms.  

For additional support, I went to a psychotherapist now and she helped me a lot. Initially she taught me breathing techniques and relaxation methods. Later we started focussing on my deeper emotional state. Each session left me feeling very positive and I really looked forward to my weekly visits. The frequency of my panic attacks had reduced to about one in four to five days by now. I had started feeling settled and thought that now I could control things on my own. I stopped therapy in the middle against the advice of my mother and obviously the therapist. 

It had been three years now since the office incident. I was improving yet suffering. Mom kept telling me that medication and meditation were both supporting each other and I should use both. 

Soon I decided to take a second opinion about the medicines that I was taking. The ones I was taking were obviously not doing much. The new doctor gave me a new course of medicine that I continued to take for a whole year hence. I had gained more weight and had gone from being 65 kilograms to 80 kilograms. This time around though the medicines were really helping me. The panic attacks had almost gone and the work that I had done on myself with the therapist was keeping me afloat. The psychiatrist told me that I could slowly taper the medicines and eventually go completely off them. That was good news.

Photo Matthew Henry

Another good news was my relationship with my husband improved tremendously. We moved to a new country. Our shifting changed our dynamics. There were new places to explore and new things to learn. We grew closer and at some point I realised that I was expecting too much out of him. He had never experienced a panic attack, neither had he ever witnessed a person dealing with mental health issues. He believed what our society had sadly taught him, 'mental disorders are a sign of weakness'. I started focussing on myself more than on him. That instantly took the pressure off him.
From then on I made sure that I am well rested and well fed at all times. I never miss a day of my morning meditation and continue to work on my inner self. I still have an occasional panic attack, once in 6 months or so, yet I have been completely off medicines for the past 6 years. I have learnt to handle them naturally with all the training and techniques that I have learnt over the years. 

I want everyone to know that anxiety based disorders are like any other illness, they can be treated with medication, support, self-awareness and love I also want to tell each one of you that if you are suffering from any mental health condition.. please seek help from professionals.. Unlike the unfortunate popular opinion, you are not mad if you visit a mental health professional.. Don't suffer in silence.. For silence can kill.


* If you found this story inspiring then don't forget to comment and let the author and the hero know about it. Please also Like, Share and Subscribe to The Hope Tribe.You can be the instrument of Hope for someone by spreading these inspirational tales. Thanks, Mallika Bhatia, Founder The Hope Tribe

Thursday, 20 September 2018

Her gender was her crime

Her gender was her crime. 


The story of Nupur (Name changed)
Based in Europe
Written by Nupur herself
Edited by Mallika Bhatia

Life is what happens to you when you are busy making other plans.

Little did I know that 2012 would change my life forever. God had bestowed me with the bliss of motherhood. I knew this was special and it was the right time to welcome our bundle of joy. Our four year old marriage was culminating into one of the best phases, at least I believed so back then.

Unfortunately this was only what I believed. To my husband it was something that happened by chance and probably should not have happened at this point in our lives. We had discussed about having children in the past and considering the fact that both our families were pressurizing us, we did not have a lot of time to wait. Though we had never discussed the preference of a gender for our child. I didn’t even know a preference could exist!

Photo by Annie Spratt on Unsplash

Me and my sister are still the strengths of our family. My parents never made us feel that having two daughters was a burden on them. We always got the best of everything and we believed not just in taking but also returning back to our parents. We tried to obtain good grades and always gave our best in every aspect of life, hence for me a child was a child, regardless of the gender. All I wanted was a healthy baby and within myself I knew I always wanted a daughter who could grow up be my best friend.

I got pregnant at the beginning of 2012 and I was overwhelmed with joy. My husband told me that I needed to be strong and had to make sure that I am physically fit during my pregnancy. I had always taken care of all the household chores ever since our marriage; buying grocery, cooking, cleaning, everything was my responsibility, even though I worked. It continued to do all that even during my pregnancy. In the second month though, while I was asleep I suddenly felt very uncomfortable. To my dismay I was bleeding heavily. I started crying and thought all my dreams, my future-best friend, my bundle of joy is gone. I couldn’t wait until next morning to visit the doctor, so I decided to go at night. I had always been to the doctor’s visit alone so far and this one too I went on my own. My husband decided that he needed his rest because he had an important meeting next morning.

Luckily the clinic was just a few meters away. The gynecologist did some tests and declared that the baby was fine. My little one even showed me a thumbs up during the ultrasound. I could hear a voice in my head saying, ‘mumma everything is fine. Don't worry I am here to make your world a better place’. The doctor did suggest complete bed rest for two weeks following. I took off from work and tried to rest as much as possible. My husband also tried to manage the household chores by himself, something he had never done before.

At the end of the first trimester, we got to know the gender of our baby. It was a girl. I was elated. I wanted to literally jump with joy but to my surprise my husband was NOT. He was very upset that we were not having a boy. He told me he had expected a son. He continued telling me how every family member in their extended family had a son and how my image would be tarnished in his family because I was giving birth to a girl child.

I was in shock. Here I was, on steroids to strengthen my uterus and protect my baby and my husband simply rejected the child based on her gender. This educated man who knew how genders of children are decided was blaming me for something that I wanted to celebrate. He said he was not prepared for a child and this was one of the biggest mistake of his life. I was too shaken to react. I was also questioning my decision of spending the rest of my life with this man.

Photo by Edward Cisneros on Unsplash

Ours was a love marriage. I am from the South of India and he is from the North. Our customs, language, culture, everything is different. I had to work hard on convincing my parents to let me spend the rest of my life with him. Here I was, at this stage of my life when I needed to share my emotions with my mother, I couldn't I could not ask for her support, I could not confide in her. I could not get myself to tell her what her son-in-law thought about a girl child. So I just kept talking to my womb, I also tried to console myself that this will pass.

Everyday I heard new things from my husband, He would tell me about his friends who were lucky they had sons. He repeated multiple times how badly my husband wanted one too. He wanted to play cricket with his son. He even said that if we ever had another daughter he would divorce me, as if it was in my hands. I kept swallowing my tears everyday. I used to spend sleepless nights thinking about my future and yet in my heart I believed that this child would change our destiny.

Back in India we were a struggling pair of software engineers who could not afford neither a house nor a car of our own. The move to a different country was made because I knew we would never be  able to suffice the demands of his family who always had gifts on their minds. They had taunted me just before our marriage on how their son/brother had lost out on so many marriage prospects from girls settled abroad for someone like me. For me it was very clear that close to his family was definitely not the place for us to live in the long run. I had to get away, as far as possible. I managed to get an onsite to Europe first, eventually my husband followed me.

Going back to my pregnancy, overall it was very difficult. We were living in a foreign land without any support and then to top it my husband’s constant remarks and my weak uterus. It was all together a nightmare. My mother had come to help me out with the pregnancy and delivery. I was determined to give a normal birth. I used to tell myself that I can go through any pain to bring my child into this world. I crossed my due date with no signs of any pain. Eventually I was admitted to the hospital and given pain inducers. In spite of all the medicines there was still no signs of labor. I had to finally go through an emergency C-section and my daughter was born at Midnight.

Photo by rawpixel on unsplash

Beautiful child with twinkling eyes and red cheeks. My joy knew no bounds. My husband also seemed mildly happy. I could somehow see a streak of sadness on his face.

Now began the real nightmare, I was not lactating much and the doctors kept insisting on only breast milk. No matter what I did, the supply was not sufficient. She was also not latching well. On the second day of her birth she had already gone from 2600 kg to 2300 kg.  I was still trying to feed her when I noticed that something seemed amiss. My mother, who was with me went to call the doctors immediately. My child had shivered heavily and then she had gone numb.  We were told that she had had a seizure. She was immediately shifted to the Neonatal Intensive care unit.

My ray of hope was taken away from me, my stitches hurt, my heart sank and I had no clue what was going on. I was anxious and sad. I waited till the next morning before requesting the doctors to take me to her. She was in another building and they offered me a wheelchair as I was yet to recover from my C-section. I denied the chair and decided to walk to her. It was very painful but I had promised to go through any pain to see my child and I did.

There she was in the ICU with pipes through her nose and her tiny hands. Doctors declared that she had hypoglycemia and suffered seizures as her glucose levels had gone low. They extracted blood from her leg every couple of hours to check her level of glucose. I spent the entire day waiting outside. I could only meet her during feeding times. It was an emotional hell .

Photo by Marcelo Leal

I was soon discharged but of course I could not stay at home. I used to drag myself out of home,walk one kilometer until the train station and another kilometer from the station to the ICU. Every day I would return home at 10.00 PM with a heavy heart since I had to leave my child behind. This routine continued for a month post which she was shifted from the ICU to the normal ward.

The only communication I had at the hospital was how much intake of milk she had and what her glucose count was. It was painful, but I couldn’t give up. Was God was testing our patience or was teaching my husband a lesson, I didn’t know? My husband used to cry and pray to God to heal our child and keep her healthy. I am not sure why but I think it was because the stigma of having an abnormal girl child was a lot more than having a girl child.

Eventually she recovered and we brought her home after a few a days in the normal ward. It was soon time for my mother to go back and my mother-in-law to come. I was glad that she was coming as I knew she had experience with babies. We lived in a Studio apartment back then.

As a new mother, I was still learning the tricks of feeding and putting her to bed. Though every time I breastfed her, my mother-in-law would insist on giving her a bottle. She wanted me to get back to all the household chores. Instead of helping me she wanted to spend all the time with my baby. At night instead of sleeping, I would be expressing milk for her and yet I was not granted the liberty of sleeping during the day. My mother-in-law didn’t like people who slept during the day. Both me and my child needed rest which we were not getting. In fact I was being treated as a maid and was constantly taunted about how her son missed out in life by marrying me. How me or my parents never did enough for my in-laws and did not give them enough presents. I was told how we also needed to constantly buy expensive things for my sister-in-law and everyone in the extended family.

I was obviously not given the gold or clothes by them, as it is a tradition after delivering a child.
It was all getting too much for me. My husband was also acting weird and both of them together would comment on how fat I was getting. They started making plans of taking my daughter to India so that I could continue working and earning money for them. These were the toughest 6 month of my life. It was during this time when I realized that my financial stability was of utmost importance. I couldn’t depend on anyone.

I just kept swallowing my tears, my thoughts were also killing me from inside. Many a times, I thought of ending my life but then my daughter’s face would flash in front of my eyes. I knew that for her sake I needed to fight it out and emerge stronger than ever before. I took up running to clear my mind.

I restarted working when she was 6 months old and my daughter started going to the daycare.
I no longer loved this man, who was now the father of my child. My relationship with my husband was more like roommates. I could not forgive him for all that he knowingly or unknowingly did in the past year yet I had to stay with him because of my daughter. My husband was too busy with his work to pay attention to our child, who had started craving her father. She was my life but deep within I was very lonely. I had my office work, the household duties and the entire responsibility of my child. I had no one to express my sadness to. I never showed my anger and my discomfort to anyone. I just put on a fake smile all the time. That’s all I could think of back then. I often wanted to flee away with my daughter to a happier place. I then decided to start writing to vent out my feelings and it helped me greatly.

I believe it was my daughter’s luck that both me and my husband grew in our careers. We moved into a bigger house and things were finally falling into place when all of a sudden my daughter suffered seizures again while asleep. She was 2.5 years old now.

I was shattered yet again but the situations in the past had made me strong enough to handle this calmly. She was again admitted to the hospital and underwent MRIs,EEG’s. The doctors could not conclude what caused the seizure again. All reports were normal. She was put on medication which could not prevent the seizures but could  prevent damage to her body in case she encounters a seizure. Ever since then my life my revolves around her proper and timely meals so that she can have her medicine on time, counting hours to her next dose, making sure she gets enough sleep and that she doesn’t fall and hurt her head.

She is five now and for the past almost five years we have believed that her seizures were associated with her sleeping pattern. Recently though, an Ayurvedic doctor in India said that she has breathing difficulties due to enlarged adenoids and the seizures could be because of the non-uniform supply of oxygen to the brain. However, nobody has been able to confirm this yet through tests.

We are still fighting a battle! A battle unknown, a battle with no end. I am trying to forgive my husband, maybe it was a problem with his upbringing and the kind of mentality that people in his region are brought up with. I really wish his family taught him to love his daughter as much as he is asked to love his sister or niece.

I have always wanted a brave, intelligent, beautiful, smart and talented daughter and have tried my level best to support her in all ways. I don’t know what’s in store for her but I know she deserves the best. Me and my husband were both were bright and intelligent students in school and today we are trying in our own ways to make our daughter one.

Finally after 5 years the father-daughter have started to bond. I hope the bond gets stronger with time. I am trying to love him, it’s difficult and I don’t know if I can but I have decided to stay in this relationship for the sake of my daughter for now.

Photo by Juan Jose

I have also started to raise my voice against all the things that I am not comfortable with in his family; gifts, people, attitude, racism, competition, materialism. I have moved up the ladder in my career as well and have the confidence that if, at any point the relationship with my husband is not worth it for my child, I will walk away with dignity. I continue to run and jog to maintain my sanity.

I do sometimes wonder why only my daughter out of all the billions of children born in the world, then it occurs to me that may be God chose us because she thinks we are special and we are capable of managing difficult situations with dignity. God is helping us learn and grow. I have always been a very keen learner and believe that no matter how old I get, I will always continue to learn and embrace life as it comes .When life knocks you down either you stay down or get up. I chose to get up, no matter what and accept every challenge in life with courage and confidence.



* If you found this story inspiring then don't forget to share, comment, like and subscribe to The Hope Tribe.You can be the instrument of Hope for someone by spreading these inspirational tales. Thanks for reading, Mallika Bhatia, Founder The Hope Tribe

Disclaimer- The opinions expressed in this story are the personal views of the author. They do not necessarily express the views of The Hope Tribe.

Thursday, 23 August 2018

Our child is hearing empowered- a family's special journey



The Story of an anonymous family
Based in the United Kingdom
Written by the family itself
Edited by Mallika Bhatia

On the first night at the hospital, while the other newborn babies wailed away in response to each other, ours just slept through like a dream. Wow, parenting is so easy, I had thought. The next morning, as it usually happens, the pediatrician and her team came around for the newborn check up. They were screening for the usual issues like her heart, sight, hearing and hips. Just like all new parents, were were anxious to hear what the doctor would say. After what seemed like an eternity, she said that our baby had not responded to sound. This was followed by her telling us that it was possibly just a fluid buildup, which was a common occurrence. They would check it again after 6 weeks.

Photo by rawpixel on Unsplash

Back home we enjoyed the new born days just like any new parents would. However the frightening thought that she could possibly have a hearing issue kept cropping up. The likelihood of the hearing impairment reminded itself to us in many ways. Friends told us about white noise machines for better infant sleep, the white noise seemed to have no effect on her. We were told about the calming effects of music that the rocking chairs played, it did not seem to calm her down in anyway. We started noticing her lack of response to any sound including our voices. I remember friends talking about avoiding gadgets that made a lot of noise like vacuum cleaners and mixers during pregnancy. It supposedly sent their little ones in a frenzy and made their unborn babies react by moving and kicking. We heard from some friends about how well their unborn baby moved in response to music. None of this happened to me during my pregnancy. No movements associated with sounds, back then I did not put much thought into this. It was just an observation that got archived. Though now it seemed to be like a missing piece in the puzzle.

Even days before the 6 week pivotal hearing test, my husband had started researching about the treatments for children with hearing issues. He kept assuring me throughout that there are options available. Cochlear Implants (CI), which help children with hearing issues hear well was always an option, in case our child had such an issue. This gave us some hope, since internally we both very strongly suspected that our child had hearing issues. However reading through the details of the procedure still bothered us. We were hoping that it would be a minor issue which could be easily fixed. After the tests though, the audiologist confirmed our worst fear. He announced that our daughter had serious hearing issues in both her ears. She couldn't hear from both.

Listening to the technician talk about my daughter's inner ear had put us in an unfamiliar place. He explained that her inner ear could not convey any sound to the hearing nerves at all. The most likely cause of this hearing issue was the untreated viral infection during my fifth month of pregnancy. I had asked the doctors for medication against the infection but hadn't received any. Hearing difficulties as a consequence of the infection was something that never occurred to us. Even though knowing about the solutions was reassuring yet the diagnosis came as a rude shock. No one we knew in our extended families or friends had this issue. It was unfamiliar and overwhelming.



Amongst the many challenges of parenting that one goes unprepared for, this seemed the most difficult for us. The sheer unfamiliarity of the situation made us helpless and frightened. We had to put her through a major surgery at a very early age. We had to additionally take extreme care with preventing infections. We had to make her learn languages through a device that we had only read about on the internet. The experts who were supposed to guide us, weren’t of much help. We were just handed information booklets which were far from the guidance we had needed. In addition, in the long run it did not seem straightforward and easy to find our way through the education & support system.

Those were ongoing struggles, for now we were enjoying our little girl grow up. We had many adorable moments. We had started trying many ways of communicating with her already. We combined talking and signing with animated actions. We used a lot of sensory motor play for her to perceive us. We could see that she took in all the associations and information, except the sound. She was able to interact very well with us in return through gestures and expressions.

We learnt a lot through this process. The children at that age have a huge capacity to learn. With fun filled interactions, one can communicate beautifully with them. We loved interacting with her. It didn’t lack anything because of the absence of sound.

The decision to have her fitted with Cochlear implants at an early age was something my husband and me agreed upon soon after the diagnosis. As parents we had to make sure she gets the best of solutions the medical community had to offer. CI technology seemed to be the best fit in our case. We also decided to have it fitted at a very early age, as we believe that early intervention can really work wonders with children. She was 10 months old when she was operated and the weeks leading to the surgery were pretty stressful, to say the least.

                 


We had to provide our consent through a lot of paperwork, understanding the possible but less probable list of risks. It felt very uneasy to put her through a surgery after being told about the million things that could possibly go wrong with it. I was with her while she wailed away when the anesthesiologists was trying to find her tiny veins to inject her. The procedure lasted 4 endless hours. It was hard to find mundane things to do in order to keep oneself sane during the surgery. We were in the hospital room with a silent emptiness, waiting for the nurse to call us to see our baby. Finally she came and informed us that our baby is in the recovery room and we can wait by her side till she wakes up. The surgeon had fitted the device in the skull above her ears. The device is supposed to send the sound signals directly to the hearing nerve, surpassing the normal hearing route. The process of hearing would not start till my baby had fully recovered from this major surgery.

A month later the audiologist would turn on the external speech processor. That's when we would truly know about the success of the procedure. The wait for the first response to sound was weighing on us. We had our cameras ready. When the first sound signals were sent from the computer to the device, we waited eagerly with our camera. There was no response for the camera to capture.





Some children can react this way, the audiologist had said. We were not so sure. We had exchanged notes with other parents at the rehabilitation centre and it appeared that most other children had reacted to sound when the first sound signals were sent. We did not have a choice then but to go with their trails and wait a good 6 months for any response from her. Eventually we had to escalate the issue with the hospital authorities. We internally knew something had to be different. Thankfully they carried out some reprogramming and we had her first ever reaction to a computer generated sound-wave. She cried!

The sound had created a strange sensation for her. Two weeks after that she turned around when I called her name during play time. This was her first response to a real sound and the first sign to us that the device was actually working. We were elated and hugely relieved that the surgery was successful.

The next step was for her to perceive language through hearing. This process took a good couple of months. As parents, we had to invent our own unique ways of making sounds interesting and meaningful. For instance, we associated a real life object with the sound (name), a sign to represent that, a toy that matched it and a picture card with an animated version of it. This multimodal association is something my daughter found very interesting. Suddenly there were many ways to understand the same object for her. Every time she paid attention to the sound during a game or an interaction seemed like a victory for us as a family. It progressed from just some sounds to a word, then to two words and finally at 2 years of age she started conversing!


Photo by josh peterson on Unsplash 

Our journey wasn't easy but we are really very thankful to medical technology that offers advanced hearing solutions to people with hearing issues.The parents of other CI fitted children are our biggest source of strength till date. They understand our struggles and emotions. We help each other through our experiences and ideas. It is amazing how little time it takes to bond with people sailing in the same boat as us and how much we open up in our conversations.

Our particular favorites are the parents of a girl, lets call her C. C’s situation is similar to our daughter's in many ways. We met their family through a support group agent soon after my daughters hearing loss was confirmed. C was 4 years old when we met her and if someone hadn’t told us that she used cochlear implants, we would have no clue about it. Meeting her and the confidence her parents instilled in us with their optimism was the initial big push we needed. The assurance that it will all be OK, as long as we put in the right efforts took us a long way.

Our biggest learning from our experience is that the primary responsibility of a child is with the parents. Relying completely on external institutions isn't sufficient. It is important to equip oneself with knowledge and understanding of the problem. It is imperative to gain information from as varied sources as possible. The onus is on us and we as parents need to be proactive for our child's development. Eventually it is our child and we are ones who can understand and do the best for her. What matters is not that she is born without hearing but how best we can work with her natural intelligence. Couple the child's intelligence with creatively loving interactions and they would transcend any limitations. It works both ways actually, when the child gains from these interactions and responds well, it is also motivating for the parents to give their best.

After all, it is only together that we can reverse the situation and make a child hearing empowered.


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I loved him so much that I begged him to go...

I loved him so much that I begged him to go... The Story of Charu Aggarwal Based in New Delhi, India Written by Mallika Bhati...