Folic acid ki jai ho!

Folic acid ki jai ho!

Confused? Did the title surprise you? I am sure it did.

Let me explain. Folic acid is an important nutrient that the body requires in pregnancy. Lack of it can cause a serious crippling problem in the spine and subsequently the lower half of the body. This is what happened with an angel in Thane, Maharashtra. Her name is Manali Kulkarni. This is the story of brave Manali and her equally, if not more, brave family.

Life took a u - turn when Smita and Sandeep ji (Manali’s parents), discovered a huge boil with a network of veins on their new born baby’s back. Baby Manali was born with a condition called

‘spina bifida’, which meant a surgery for the two month old and a gradual realization that she would never be able to walk. In face of this, any parent, especially in a country like India, where a disability is treated like a disease, would have broken down and gave up. But what did Smita ji do? She decided to fight, to give a normal life to her angel.

Today, Manali is the recipient of ten surgeries, but a national award too, from our late president Mr. Kalam. Today Manali, who is a ‘special child ‘is truly special with all her awards and accolades. Today, Manali, despite being in a wheel chair, runs her own business. Today, Manali, despite her physical pain and surgeries, which can make you lose your confidence and hope in life, is aiming for

the stars. How many of us, supposedly, normal people have so many awards to our name and even if we have , have we achieved this, without whining and complaining about life’s unfairness?

Just do a google search on ‘manali kulkarli thane’ to understand what I am talking about. Pages and pages have been written about her and her accomplishments. My focus here would be to go behind the scenes. How was this possible for the family to bear all this and make her a truly exceptional child?

The family stood together with the family from day one. They were there to offer Smita ji support, food, water and kind words . Sometimes, where life beats you down, a sip of water and kind words feel like a hand from heaven. The grandparents did everything possible , like they would do for a

‘normal’ child. The naming ceremony was held with much pomp and fanfare. They played with the baby and kept her company, while the mother studied for a course that she had joined. The uncle came to see her from another town, the first day she said “uncle” to him!!!

The parents, upon realizing that Manali have may limited contact with the outside words, made sure they took outstation trips, frequently. These experiences, not only enriched Manali as a child, but also gave her parents renewed vigor and enthusiasm to carry on with their hard life. Travelling with Manali was hard at times, due to her physical condition. Her urine had to be collected at regular intervals, there was always a chance of infection. A doctor may or may not be available to treat her, in case, she fell unwell. But, the parents, brave as they are, put together all her medicines, packed their bags and enjoyed their adventures.

The mother, especially focused on the aspect of sibling attachment. Sanmita, the second daughter, was raised in a way, that nurtured sibling attachment . Sanmita, now takes care of her sister,collecting her urine and cleaning the area , in case, Manali vomitted etc. Today, the sisters are extremely close and stand by each other.

Manali was enrolled in a playschool like other children, where she started her quest for education. With a new dress, a new bag and bottle in hand, she happily frolicked off to school, despite her physical condition. Never once she caused any trouble for the teachers and the teachers too, took very good care of the doll. However, in primary school issues started cropping up with her IQ level being below average and the principal asking her to change schools. Other issues like her being left behind in class while other children ran out to play or her being pushed at the swings and not able to get up like ‘normal’ children , also prompted Smita ji , to look at an alternative school for her. She finally got admitted Manali to a school for ‘special children’, where her natural abilities in art were honed. She won state level drawing competitions, her acting skills were appreciated etc. She

become a local celebrity in her town , due to her skills, where the media clamored to interview her.

Sometimes, I wonder where her mother got the strength just to keep up with her day to day life. Changing nappies of a child till she was 3-4 years old, collecting her urine every 2-3 hours, traveling with her, taking her to various competitions around the country fully knowing her physical condition could deteriorate at any time. This was apart, from managing her daily job and taking care of the house and the family members.

Where did her faith in God and herself come from?

I get angry and irritated when my child does potty four times a day. I laud my child, at his minor achievements, when he points to the correct pictures while learning a, b, c. I cry when I get no house help in Europe to do mundane house work. I get frustrated on days for nothing, I am just over worked, overtired and my baby is being naughty and super active.

Next time I cry, I remember I am blessed to have a super active child. Next time I have too much house work, I will remember that I am able to work by myself.

Next time I feel frustrated for nothing, I will remember that maybe life is not so bad after all.

I will remember Smita ji and brave Manali, for looking at life with a never say die spirit, a hope in their hearts and a smile on their lips. On a bad day, I will remember that a family in Thane fought for their happiness, dignity, respect and never gave up. A true inspiration. My salute to the family!!

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