Parenting is no easy job, that too when you have a child with special needs. It is extra hard for plenty of reasons, but trust me; it is extremely rewarding. Sometimes you wonder where the rewards are, I would say, just dive deep down into your heart and answers will be right there for you to see and feel.
My daughter was born after 6 years of my marriage. My cute little bundle of joy with pink lips and curly hair, looked like a fairy princess straight out of Wonder Land. Our joy knew no bounds. With every delight comes the dismay I guess! Very soon, she was diagnosed with a very rare genetic disorder affecting her overall developmental milestones. My child was only 8 months old then. Did all hell break loose? I must say, the entire Universe fell apart for us.
It sort of leaves you devastated, traumatized, shattered and shocked. My everyday commute to doctors and therapists had become the norm. What worse was, I had the entire world nonchalantly giving out parenting tips, religious and astrological guidance and slyly thriving on my weak spots, sort of deriving sadistic pleasures. Important to mention that I also found a few precious gems in the process and today they are the ones integral to my life.
I had to let go of my plush job, was left with a daughter who needed plenty of help, suddenly felt lonely and life had stopped looking bright and gay. But, did someone say: Make lemonades when life gives you lemons? Yes, the lemon here was the ample opportunities awaiting me…. Luckily, nothing can pin me down for too long as a person and very soon it dawned upon me that it was a life’s calling. I realized I had to do it… because if it wasn’t for me, who else would? Empowering oneself to handle challenges is very important. I wondered how I could make a difference as I knew only two things; I had specialized in training skills and had theater in my blood. I gave it a shot. I started Chiranthana, a yummy lemonade! An exclusive life skills program designed for children with art as an intervention.
Chiranthana started in a small garage with just 8 kids (my daughter being one among them) catered to skills beyond academics. Classes were fun and enriching and before I could realize, 8 became 80, 80 became 800 and very soon we were everywhere. My daughter continued and still continues to be an integral part of all my workshops. My daughter today enjoys being on stage, can perform to a 10-minute dance/drama and has picked up a lot of skills through theater. A diploma in Inclusive Education was another add-on that gave more structure and strength to my training modules.
Play therapy and Art therapy works best with children. There is a sense of belongingness and confidence-building that happens and it is really heartening to see children reaping benefits of this.
Today, we are a registered NGO under the Trust working with children and youth. Our USP has been theater Arts and Inclusive Setup. Art Courtyard is another initiative of Chiranthana. Its been 10 long years and I have really traveled a very long way.
So, has it been easy all the way? Not at all. It’s not easy to all the time look elegant and poised and not meltdown yourself. A mother has to play the role of a Super Hero and believe in her child more than anyone else. I continue to celebrate every milestone of hers and enjoy just being with her. We act silly, play pranks on each other, snuggle along and I ensure a constant circus runs at home. I still believe in miracles, but also equip myself every other day to harsh realities of life. Insecurities like ‘What after us ?’ haunt us as a family. But I know I am not alone… There are thousands of other parents and children walking our path and fighting our kind of battles. I feel a lot more reassured today with emerging inclusive setups and awareness among people. I am sure God has his plans. Even If I hear nothing, I rest in knowing he hears me!
My daughter gave me a career, showed me how to smile despite all odds, gave me a life worth living for and made me fearless about having another baby. There were times I felt I could have done better with my girl and have come under extreme guilt pangs whenever I prioritized myself over my children(I also have a 6-year-old – typical boy) Now, I have learned to realize how important it is to be happy myself because only a happy mother can raise happy children. So, I indulge in my own whims and fancies too.
I may not always prepare the best of snacks for them, I may not perfectly dress them up all the time or micromanage them by being a hyper parent. I put all that at rest, because I know I am busy fighting bigger battles in life.
My daughter turned 13 a month ago and she today is a happy, empathetic adolescent with an infectious smile and an undying zest for life. My only prayer to God every day is to spare my daughter from the ugliness of this life, and instead ‘try me out’.
She still needs a lot of help with studies, self-help, physio, grooming, and speech among many others, but What is life without challenges? I am happy I found my concoction for my lemonade; without losing MYSELF in the process. Life just goes on.