Friday, May 11, 2018

Wish You Happy Birthday My Inspirational Daughter

When Farheena entered my life on 11th May 1995, my joy knew no bounds. Farheena has ensured that I continue to enjoy her company even to this day. She inspires with her uncomplicated thinking and way of looking at things without being prejudiced or judgmental. Having a daughter born after a son completed me as a mother.

I love the way Farheena greets the day with her unique sentence, "Tomorrow has happened!" There are many things that only Farheena can say or do, especially the unconditional and limitless love she shares with people around her. 
With her medals and certificate
Though life began with loads of challenges for Farheena, there is nothing that can stop her from being happy. Today, Farheena does not talk fluently, but she does communicate in her own way and style. She can see clearly. She walks with little help. Farheena manages her own life and keeps in touch with friends of her choice through internet. Facebook and recently WhatsApp are her favorites. 

With one of her favorite blogger friend Janaki 
With limited words she can pronounce or spell, she uses her creativity to convey messages to us. Her lack of complete vocabulary has not stopped her from communicating with people. She keeps trying until she is understood.

Sharing her friend's secret with her baby doll Annie

2015 marked a new Era of my life because this was the year when Farheena walked in with her first Salary she received for making paper bags in YST. She is involved in lot more activities now.

That was the biggest goal of my life achieved. People who do not understand the whole concept often ask me, “How much does she earn?” That is not important. What makes it important for me as a mother is to know that she is now capable of being engaged in fruitful and purposeful work throughout the day. Apart from her job at Fame Swalambhana , Farheena is busy on limeroad creating her scrapbook with styles of her choice. She has given me a few fashion tips and tries to correct me when she feels I am wearing inappropriate clothes for an occasion.

My inspiration in 2018 or any year
is my special needs daughter Farheena who has not allowed anyone to take her for granted. She knows how to protect herself and when to ask for help if someone is bothering her. She carries herself with dignity of a queen and is proud of her achievements. She has the ability to make people feel like somebody special. Moreover, unlike many people I know, she loves and respects herself.
15 years ago, I was consulting a lawyer regarding my legal rights. During the course of discussion, I mentioned that I am proud of my daughter. The lawyer then retorted saying, “Stop lying to yourself Farida. Come out of the delusion you are living in. No one can be proud of a special needs child. You can accept and love her but cannot be proud of her”. I was confused back then and walked away without answering her. I knew I felt pride in my heart when I think of my daughter but I was not sure. 
Today, I can very confidently say that I am very proud of my daughter. She has taught me a very important lesson in my life that – it is not what you get in your life that matters, but what you do with what you have which makes the difference. I know she will continue to inspire me in the coming years as well.
I am very happy to share the story of my hope and happiness to people who may feel overwhelmed by the challenges in their lives. Hang-on and fight with all your might! You will succeed.

The pretty Baby

Loves to dress up

Determined to get on her feet after triple
fusion surgery on ankles

Making her style statement

One of those rare days when she cleans
our home

Wednesday, April 4, 2018

Three Frogs Who Jumped Out Of Well

Sometimes we live in a well and lose our ability to imagine anything beyond the walls of the well. If not exactly frogs in well, my two children and I were almost going through that phase in our lives. Our two big leaps happened when we shifted from the confined city life to a village and then from the village to USA.

Rayyan my son was very much loved by my family, but that also meant the precious baby was over protected. Farheena was my special needs daughter, so in a way she ended up being overprotected as well. My house and my family turned to be their first well and they could not see anything beyond it.
There came a time when I decided that my children need to see the world beyond my own family. So, unwillingly, breaking many hearts, I moved on to live independently with them to a village called Byndoor. Rayyan now learned shopping for household groceries, cleaning, playing outdoor games, go out trekking, swimming and many more life skills which he missed in Bangalore.
Enjoying beach fun in Byndoor

 Unfortunately, the rural surrounding hampered Farheena’s social life, though she found some good friends out there. I thought we have jumped out of the well, not realizing that we are just in another well. We lived in our room of 7 by 9 feet and felt good about it.
Sometimes blessings come in disguise and I can say, so was my cancer. Though a life threatening condition, breast cancer has been one of the reasons for many of the positive breakthroughs in my life. My window to the outer world opened up through my need to connect with other cancer survivors for emotional support.  Since I could not find support group anywhere around me, I reached out further and further, finally ending up with a support group in USA. Talking about my cancer experience, the bond started to build up between me and other survivors, especially between Paula Gerding.
With passing days, Paula became the loving Pee aunty to Rayyan and Farheena with whom she would connect through webcam regularly. Farheena, my special needs daughter fell madly in love with Paula and wanted to meet her. This gave birth to our travel inspiration. Traveling to USA was easier said than done.
Visa, travel expenses and many other things were supposed to be taken care of. We were not one of those world traveler types. My children had not even traveled outside our state. Yet we did not give up, neither did Paula. One fine day, we just reached to the skies and traveled to USA.
The warm welcome we received at the Tampa Airport
 It was an out of the world experience for us. I know many people travel to USA from India, but I am not sure how many of them get to live with the Americans like we did, especially with a person like Paula.

If we were touring USA, we would never experience something like this.
From city to village life and now to USA, Rayyan was exposed to different environment which were worlds apart from each other. 
Rayyan learning to take care garden. 

What surprised me the most was the change I could see in Farheena. She was laughing, playing, and communicating with almost everyone around there. Her expressions changed. She wasn’t peeked into curiously by the Americans, but instead she was called a pretty girl, appreciated, welcomed and greeted with a ‘Hi’ even by people not known to us. She soon became the star of our group.
Learning photography with Sandy
Farheena has mobility issues though she walks around. There were many times when I had to stay back with her or ask Rayyan to stay with her so that one of us could complete shopping or any other work. USA was much friendly towards special needs of people. She could go to movies, parks, resorts, shopping malls since she had enough support to give her access everywhere. Ramps, wheelchairs, railings, toilets and other things made a huge difference to her life.

Never seen her smile like this before....
More than that it was the people around who were open minded towards special needs people that touched my heart. No one peered at her as though she was some weird being. No one questioned what was wrong with her. She was treated like any other person around, but with a bit more love and care. It was amazing to see her waving to the people and greeting everyone with a big smile.

The girl who was terrified of dogs, suddenly accepted them as her best friends. They would wake her up every morning and she for once did not grumble when getting out of her bed.

The Indian Saree was a craze among my American friends. This made us to organize a Saree party. Friends from different states of USA gathered in Florida for fun with Sarees.

They learned so much about India and our culture by meeting us and living with us.
There were simple messages passed on. One of the issue with Paula initially was why I was took the leftovers so seriously and packed them into the refrigerator instead of disposing them. Slowly she learned to see my point of view of how it finally makes a huge difference to our budget and also to world food crisis. Sometimes I could just spread the table for four for a lunch or dinner with only the leftovers which I had modified to suit our taste.
We discussed everything from arranged marriages to religions, sexual preferences, parenting styles, corporal punishment and many more. There were times when we would disagree and agree to allow the other to disagree on the issue.
For a middle class family it was tough decision to travel to USA and live with our American friends. We knew that the lifestyle, food, culture and everything would be different, but we never realized that experiencing something different and new would be so enriching and beautiful. We loved the new world we visited and wanted more of it.

When I came back to India, I was changed. So were my children. It motivated me to take my career seriously and also take up education and learn something new. Slowly in the last one decade, we worked and carved a new life for ourselves.
After observing Farheena’s change in USA, I decided to give her the second best option and slowly settled down in Bangalore. She started enjoying her time - first in special school and then in vocational centre. She also made friends here and learned to communicate with them through social media.
Rayyan made firm career choices and ended up doing what he loves to do. It was a proud moment for all of us when his team was one of the top 5 chosen for the XPrize.
As for me, I settled down with a Montessori and Daycarecentre of my own. It was a dream I always cherished. I am sure that my travel and my experiences in USA had a great influence on my becoming financially independent person. Initially there was a desire in me to change the world, but my travel inspired me to change myself. This eventually changed my world as well. 
Though busy right at the moment, we have plans to travel and meet our friends in different parts of globe. We want to experience the world not like tourists visiting the famous monuments and tourist spots but like friends and visitors who would get a glimpse of different culture and lifestyle from the close quarters. Our exploration would be of the real world and not just the famous tourists centers. We want to love the world as it is - different from our own world yet beautiful and lovable in its own way. 

Saturday, February 24, 2018

Cancer Care Without Financial Scare?

Though money is not everything, cancer care or treatment does not come free. Financial burden adds to the suffering of many who are battling the illness. A single sitting of chemotherapy costs about INR 90,000, a full-fledged cancer treatments runs into lakhs of rupees. What makes the matters worse is availing any kind of treatment for the poor is a challenge. They either face shortage of quality care, or shortage of money or often are deprived from timely care. 

I was kind of surprised with an invite to attend an event at JW Marriot hotel to be a part of New India Movement. 

It was an amazing gesture from Bangalore based entrepreneurial  couple, who decided to donate 200 cr to the self-funded NGO "New India" to make cancer treatment cashless. It was wonderful to know that Vijay and Amrita Tata  couple celebrated their daughter's birthday in this unique way. I can imagine how much Rs 200 crores donated for the underprivileged can help them survive and be with their loved ones.
The fund came in the form of 50 acres of land in Bangalore worth Rs. 100 crores to the trust and an additional Rs 100 crore to be used towards development of Super Specialty Cashless Cancer Care Hospital for poor people. Bollywood Actor Emraan Hashmi who had faced the brutality of cancer when it affected in son, launched the initiative. In his own words, inaugurating the NGO, Emraan Hashmi said, “I have very closely seen the pain which cancer patients and their family goes through.NEW INDIA’s initiative to create new hope for poor cancer patients is worth appreciating and I am glad that individuals like Mr Vijay Tata and Mrs Amrita Tata are coming forward to take this novel step.”

New India is a nonprofit organization that will be completely self funded by Mr Vijay Tata & Mrs Amrita Tata and will focus on creating a new hope for the betterment of underprivileged. 
New India solemnly commits itself to the fight against cancer by ensuring to take strong steps in making sure that cancer treatment and care is available to all the needy and poor for free. Because with Cancer what kills faster is the cost associated to it. NEW INDIA already has earned itself a 50-acre land worth Rs. 100 crores that will be the foundation on which a cancer hospital for the underprivileged will be built. 

It aims to cater women, children, critical illness and stop-rape initiative to bring justice to rape victims and help them resurrect their lives. As the first initiative by NEW INDIA, it has already pledged 50 acres of land worth Rs 100 crores in Attibele-Anekal Road, Bangalore to the trust. Additional Rs 100 crores will be used towards construction of the super-specialty cancer care hospital. All underprivileged cancer patients fromacross India will be treated completely free of charge. This will be the first cashless hospital across India.

Hope more millionaires in India will take a hint from this couple and contribute to the society in the right way. 

Tuesday, January 30, 2018

Technology Aiding Healthcare

Back in 1996, when I was diagnosed with cancer, I had no clue who I was pitched against in this battle. All I knew was that it involved surgery, chemotherapy and radiation to fight cancer. I did not know much about the technical terms I was coming across back then.
Later on, year after year of survival, I realized there are lot more terms in breast cancer that I had no clue about when I was diagnosed and went through the treatment. ER positive/negative, PR positive/negative or triple negative were some terms which I had no clue about.
Later when I heard about BRCA1 and BRCA2 genes, I was in denial that cancer can be genetic, since, if yes, then it meant I would have got it from my mother. I did not want to feel that way. Though there were hints with my sister, my mother and myself being diagnosed with breast cancer, I did not want to accept the fact. But it lead me to read more in detail about inherited mutations in BRCA1 and BRCA2 and how they increase the risk of breast and ovarian cancers in women. It was new information for me to know that these genetic mutations are associated with higher risks of many different cancers. Hereditary breast cancer was an unacceptable but genuine bitter pill for me to swallow.
Finally, I put up enough courage to go ahead with the mutation testing. The reports came back stating that I was BRCA2 positive. Since breast cancers associated with BRCA1 and BRCA2 tend to develop at younger ages than the nonhereditary types, it explained my own diagnosis at the age of 29 and my sister’s diagnosis at the age of 30.
 With more research and understanding of cancer, I realized the need of technology in healthcare to fight cancer the right way. Back in 1996, I thought total radical mastectomy was the best way for me to fight cancer, even though my doctor gave me an option of breast conservation. Now I realize that at the age of 29, I need not have surrendered my whole breast. Though I have learned to live with prosthesis, sometimes I do miss the symmetry of my body.
There are lot of organizations today, like Tempus, who with their team of innovators are obsessed with developing breakthroughs in how we tackle diseases the right way. This will highly customize the treatment that the patients receive.
One of the most prominent question in most of the people going through cancer treatment is regarding the outcome of the treatment. Usually we do not get definite answers to our questions. Fortunately, today the advanced image recognition algorithms extract key image characteristics from radiology and pathology images to create imaging data sets to better measure outcomes and to inform predictions. Though life is quite unpredictable, it is nice to know where we stand in this battle for our life.
I am aware that today after being a cancer survivor for 22 years, that data analyses plays an important role in the outcome of treatment results. I realize that something like sequencing services and analyses of somatic and germline molecular data along with therapeutic data will empower those dedicated physicians to make better data-driven decisions to give those fighting cancer a better chance of living quality life for a longer period of time. Technology will give us the edge over cancer. Innovative and breakthrough technics like Bioinformatics system delivers accurate variant cells of genomic and transcriptomic data. Further, classification platform combines complex algorithms with a robust set of curated databases to enable experts to make fast and thorough decisions, all in the context of a patient's case. This new approach to next-generation sequencing aided by modern technology will give doctors today an access to a variety of sequencing capabilities, all with full transcriptome and tumor/normal match which will customize treatment for a specific patient and target the cancer cells more accurately.
After 22 years of survival, though my risk of recurrence has come down tremendously, it still gives me more courage and hope that with present developments in cancer treatment, I can fight it off if it ever makes a come back again. Thanks to all the people who are trying to make cancer treatment more successful.
I have lost my mother and my sister to breast cancer. I hope technology and dedicated research to fight cancer will prevent others from losing their loved ones to this disease.

Tuesday, September 5, 2017

Remembering My Teachers With Love

I was a fierce person from my childhood, or precisely I was a fiercer person in my childhood then I am now. On teachers day  I am sharing an incident, from my childhood which looked normal to me back then. Anyway thinking of it now, I feel, I really achieved something to be proud of and also be proud of my teachers who did not push my argument aside. May be, it sowed seeds for a lot of confidence to develop in me in later life.
My Mom was an extravagant person. As a result; though my Dad had fairly good income, she could not plan the budget the right way. She ended up leaving out some necessary things not attended to or spent upon. Food was the main agenda on her budget and we could never starve. Once we were stuffed to the full; she would look into other things. If children would make more demands then she would get it for them by hook or crook. Sadly, in all this love and care, the electric bill, our school fees and other such necessary payments remained to be paid. Once, my monthly school tuition fee was not paid for 8 months. Our convent had provision for free education of poor students, but I did not fall under that category. My dad worked in Joy Ice Creams Factory, which was located just opposite my school and his income was good enough.
There were few very rich students in our school, as well as poor students who fell under the category of free education. These children had no problem. Then there were the in between students like me, who had to struggle to pay the monthly fees. So, by the end of 8 months time, Mother Superior lost her patience. She called upon the class teachers to send all the students who had not paid their fees to be made to kneel down near her office until she comes over there to punish them. There were 19 students in all, two among them being me and my sister.
 I always enjoyed something different from routine life. Initially it was fun being led out of class room and being made to kneel down near the office. I was small and this did not mean an insult at that stage. Those feelings come over only when we are adolescents. Within a few minutes my knee started to hurt very badly. It was fun no more. In no time my mind started to wonder why I had to suffer the pain. What wrong had I done? I was a studious student in lower primary school, who did all the work allocated to me. I could not kneel down for long and so I stood up.
Everyone gave me the look described by Charles Dickens when Oliver asked for more porridge. No one had ever gone against the orders given by the school so far. My sister gave me ‘the look’ and indicated I kneel down quickly before anyone saw me. I shook my head and refused. All students were aghast. I saw a teacher rushing towards us. Mother Superior was walking from the convent house with a big cane. There was fear in me but I was not going to surrender to fear. I knew deep in my heart that I was right and I did not deserve the punishment. The teacher lifted up the stick and whispered harshly for me to kneel down before Mother Superior came.
I replied, “Miss, what wrong have I done?”
The teacher replied angrily. “You have not paid fees for past eight months”.
I did not understand how this was my fault. So I replied again, “My parents haven’t given me the fees, how should I pay it?”
The teacher was confused. She was losing her temper too. She hit me on the back and said, “I don’t know about it. You should pay the fees if you are to study here. Now kneel down”.
I was angry that she hit me. Now I replied loudly, “I will not kneel down. My knee hurts and I don’t like pain”.
By then the three nuns; Sister Claudia, Sister Lawrence and Sister Fatima had reached over to the place. They were not used to arguments and were kind of shocked to see a little girl answering back. Sister Fatima was the kindest one and Mother superior Claudia was the toughest. 
Sister Claudia: What is going on? What is the problem with you girl. Aaahhh it is you Farila! Now whose hair are we going to pull?
Her first encounter with me had been a tough one too. I had insisted that she pull the hair of the boy who had pulled my hair and in the process had praised him highly without realizing it.
I was quite embarrassed with the mention of the incident, but nevertheless, I wasn’t going to back up now.
Me: I am being punished for no fault of mine. I do my homework regularly, take part in activities, come to school on time and follow all the rules. Why am I being punished?
Sister Claudia: Girl, you have not paid the fees.
Me: Not me Ma’am, it is the fault of my parents. If you punish me they will not pay the fees. The stones are pricking my knee, not theirs. Make them kneel here ma’am because it is their fault. When their knees will hurt, they will learn their lessons. Beating me or making me kneel down is not going to change things.
(off course the above conversation happened in much simpler and broken English which I cannot repeat exactly because I have lost touch with that language).
The teacher lifted her stick once again as she was very upset, that I was arguing with mother superior. Fortunately, Sister Fatima intervened and took my side. She said there was a point in what I was saying. It was actually wrong to punish children for no fault of theirs. Sister Lawrence looked confused, though she agreed with Sister Fatima, she said that something had to be done about children not paying the fees. The three nuns stood there and had a small discussion which we could not hear. I did not look at my sister as I could almost feel her stare piercing my skin. Finally the nuns ended their discussion. They decided the children should be sent back home and not permitted to attend classes until the fees was cleared.
It all happened there and then. The rule of punishing the students for not paying the fees was changed. Mother Superior asked all of us to pick up our bags and go to our classes. She said we will not be allowed to attend classes if we did not bring our fees the next day. That did not go down smoothly with me. So I tried to talk to her again.
Me: But Ma’am, I want to study and I don’t want to miss my classes.
Sister Claudia: Oh no! Not again Farila. You have to learn to end things. This is final. One more word from you, I will make you kneel down and hold you down there myself.
Now I was scared and shut my mouth. Inside, my heart was telling me that it was wrong to stop a good student from attending classes for their parents fault but I did not dare to argue anymore.
I have great respect for my teachers who had patience to look and listen to what a poor girl was saying. Back then it did not mean much to me, but today I think of them with great respect, hold them very high in my thoughts and look up to them for inspiration.

Later in life when I saw the children (not my son) being beaten for not paying the fees in my son’s school, I could not bear but intervene. The H.M. there said the owners have made the rule and she is helpless. I pursued the matter for quite some time but did not see the change. That shows the greatness of my own teachers.

Tuesday, August 1, 2017

I Quote

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Tuesday, July 18, 2017

Sometimes It All Looks So Unreal... Like A Movie

The fight was real though and here I am today.. living my dream life.

Monday, April 10, 2017

I Quote

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Thursday, April 6, 2017

Help Your Child Perform Better In Board Exams

In today’s competitive world, acing board exams is one of the ways children can ensure a financially secure future for themselves. Apart from being a good method of gauging what students have learned in the school, board exams also help students successful study skills, learn to correct their errors, develop the habit of practice and preparation for success, and also learn to handle the stress of competition in a healthy way. Though teachers are there to help the students understand subjects and learn and recall the information to write the exam successfully, parents can contribute a lot to the success of the child in board exams with their support.


Rayyan Lost in Laptop

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