Friday, August 12, 2016

One Step at a Time

The story of my little princess who took one step at a time to reach her life goals
Many miles are covered and destinations reached when you take one step at a time. By bringing up my special needs daughter Farheena, this is one of the most important life lessons I have learned from the chapters of my life.
When doctors announced that my pretty as picture baby would not be able to walk, talk or live her life fully, the shock was terrible for me and my family. Why my baby? The inevitable question was asked by me, like many moms do; but, who can answer that question? Soon it was time for taking the right steps and making life as good as possible for her instead of finding answers or playing the blame game.
I could not change the past, but I could change the present and future for my daughter. I decided to hold on to hope, not blind faith or superstitions, but only HOPE and give the best life for my daughter.
The first step was a big one for me to take. It is accepting the truth and accepting my daughter for who she is. I made a promise that I would not compromise with her life, no matter how much I had to change myself, my family and people around me to give a better life for Farheena. I have to confess that I got things done my way by hook or crook at times. No guilt here!

Oil massage was a part of her therapy

Rayyan, my first born who was the apple of everyone’s eye, could not be neglected just because I had to take care of my daughter. So began my tight rope walk from the year 1995, maintaining balance between taking care of an extremely sensitive and adjusting son and highly demanding and attention seeking daughter who needed extra attention. Luckily, I had an angel for son, who helped me by playing with her, holding her when she walked and trying to teach her new activities.

I did not mark developmental milestones for Farheena; instead I decided to take one step at a time. My doctor advised me against giving her any medications or going for surgeries unless it was absolutely required. Physiotherapy and stimulation were highly recommended by her pediatrician.
Every massage is followed by
water games.. the smile says it all
Along with the exercises of physiotherapy, Farheena was allowed to feel different textures, play in water, and sit out in sunlight for stimulation.
My Mom was a great fan of oil massages for babies. It was one of the traditional therapies she trusted a lot, besides feeding people Ghee and talking about the benefits of Tender coconut water. Rayyan had his share of massages before he started escaping from his mom, aunt and grandma. The boy just hated oil.
On insistence and assistance from my Mom, I started giving massage for Farheena.
fortunately, Farheena, unlike Rayyan did not hate oil massages, as she loved water. She knew that every oil massage would be followed by bath and play time in water. I focused more on her legs and her feet.

We did not stop with just massages for Farheena, but also got her involved in every activity of my family. I and Rayyan took her out on walks every evening. Rayyan would lovingly talk to her and explain things to her as we pushed her pram. At home she was involved in cleaning, sweeping and cooking too, as much as she could do. I never worried about the mess she would leave behind, as long as she enjoyed herself and was involved in some stimulating activity. My Mom, Dad, Sisters, Brother and off course Rayyan, all contributed a little towards Farheena’s development. I have to mention here that, my family was not possessive towards Farheena like they were with Rayyan, and even to this day, he remains their clear favorite. But they were good enough for Farheena and loved her a lot. Due to different circumstances, I had to manage Farheena single handedly most of the times.
Farheena enjoying the beach
When I shifted from Bangalore to Byndoor, the one advantage I had there was the Someshwara beach. The high disadvantage was the attitude of people towards special needs children. Unfortunately for my children, especially for Farheena, there has been not much help or support from her father’s side of family, with whom we had to stay in Byndoor. Farheena, the active girl who participated in all activities, started to withdraw from social life. She selected a few people with whom she would communicate, but started being silent and quiet in public.  She also started to hesitate to walk on the roads as people would not stop at giving her stares, but would come up ask questions.
Farheena determined to do her
exercises with cast on her leg!

As days went by, even with all exercises, activities and massages, Farheena had trouble walking, and the crouch gait became more prominent. Within a year Farheena’s crouch gait worsened and she required corrective surgery on both her feet. She was under the care of Dr. Gautam Kodikal since her childhood. So I consulted him and he decided on triple fusion surgery for both her feet. Farheena handled her surgeries very bravely and did not give up on her exercises even when she had her leg in cast.
After her surgery Farheena met an amazing person she called Hi-Bye aunt. The name referred to her saying Hi, when she came on webcam and Bye when she went off it. Paula, a sister in surviving cancer from USA was wonderful friend for my children. She was a breath of fresh air and would spread smile on Farheena’s face with different antics. Farheena started communicating with her on Webcam and enjoyed her time with Paula a lot. Meeting Hi-Bye aunt became an obsession with Farheena.
Finally, after a lot of struggle, we embarked on our journey to USA. Farheena underwent an amazing change in the social environment of USA. She was friendly with everyone and would make friends easily. That is when I realized how our society is pushing her into the shell with their negative attitude. In USA, one of my friends, Lois gave me instructions about the proper method of giving massage to Farheena’s legs. She told me apply heat on the legs with a hot water bottle or towel dipped in hot water to relax the muscles before giving her massage. The relaxed muscles respond more to oil massage that follows. Farheena’s life has been enriched with the breast cancer survivor friends I met in USA. Today they keep in touch with her through Facebook more often than they do with me.
When I came back to India, I decided to move back to Bangalore. Farheena had no future in Byndoor, moreover, she was not happy there. The change was not possible all of a sudden. Again it was time to take one step at a time towards our shifting to Bangalore.
Finally, it did happen. Farheena started going to a new special school ‘Fame India’ in Bangalore. She started meeting my friends and chose some of them to socialize with. She loves the Indiblogger and other blogger meets where she is given special treatment and loved by many of my fellow bloggers. Furthermore, she has her share of cousins, aunt, uncle and my own family to interact with in Bangalore. 
Farheena posing with her medals and
She is happy once again. Today a young woman of 21, Farheena is almost independent in managing her own life. She loves her iPad and facebook. She plays computer games, surfs net and helps at times with house work, but only when she is not feeling lazy. With little support she started walk up to a mile and also climbing stairs and reach the 3rd floor of her school building easily.

After completing 2 years of training in FAME India, Farheena was employed by Fame Swavalambana where she is earning a small salary at present.

She also does scrapbooking on LimeRoad.

When it comes to bringing up my children, I have taken refuge in nature and resorted to natural remedies most of the times.Slowly and steadily with the proper stimulation, help from family and friends, Farheena has come a long way from the child who many doctors considered will never be able to see, talk or walk.

The greatest achievement of Farheena for me has been her ability to distinguish between good and bad. Anyone as much as gives her an odd look, touch her or tell something inappropriate, she immediately brings it to my notice or some person from my family. She has accepted herself with grace and knows to treat herself with respect. The pose she gave to be photographed with her medals and certificate, tells a lot about her confidence in self. The one step at a time taken in the past 21 years has brought not just Farheena, but also me to a destination from where we can look ahead with hope, confidence and pride.
Carrying Farheena around
was tough after my cancer
Even though I tell you that it was just a tiny step at a time, it was not easy. There were many tough decisions I had to take at times.  One of them was whether to put Farheena on a wheel chair or not. I decided not to put Farheena on a wheelchair. Today I can say, the decision I took was right. When I was diagnosed with cancer, carrying Farheena became quite tough for me. The mastectomy and chemotherapy took its toll on my strength. But then, children can be great energy and moral boosters for mothers. So has been my lovely daughter to me. If not for her, I would not have picked up the bits and pieces of life and created a wonderful collage out of it like I have done now. She gave me goals to achieve. Today I have no regrets about the decisions I have made. I have to thank everyone who has given a bit of their attention, time and love to make Farheena what she is today. 

Farheena in the morning sunshine

                  The brother who walked with her every step.. a strong pillar of support

Farheena was a changed teen in USA
With her uncle who took her on
bike rides

Some of Farheena's friends from around USA
The girl loved playing in water even during cold
A confident Farheena
cleaning the ceiling fan


Rayyan Lost in Laptop

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