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My mother took a breath to pause and as she vividly recalls so often, made a split-second decision whether to beam back at me for uttering my very first few words, or act on the bomb I had just dropped on her. After all, her 11-year-old child with Down’s syndrome did give her a run for her life, and how! The mischievous kid that he was, he made sure that he kept us all on our toes, pulling off the vanishing act every now and then just to make sure he has our attention glued to him!

The spark in his grin is fresh to this day. And 25 years of fuzzy memories haven’t really been able to erase the charm he exuded in every move he made, everything he said. As the sibling of a child with Down’s syndrome, I have a lot of untold stories like that. Most would warm your heart, others would make it fall with a thud. I assure you though, that every story I bring across will change the shape of your heart, for the better.

I breathed, sensed, and experienced a world completely different from the moment I opened my eyes to this world. Oh, wait, a wee bit before that. My mother tells me with both a spark and pain in her eyes, how she would gently place her hand over her womb and usher these words to me – “Hey baby, there’s a very special guy waiting for you here. Take good care of him when you come.”

No wonder the first words that spilled out of my mouth, my consciousness, were what they were. “Mumma, bhaiyaa gaya.” 21 years onwards, he indeed was gone.

And we moved the world to make sure he stayed just a few more days than his medical condition would allow. We played a tug of war with the devil, and boy did we give it a run for its money.

His presence shaped my thoughts, my sentiments, my perspectives, and hence the very core of who I am as an individual. To this day, I have a clear recall of the days I would spend at the special school he went to. Just silently appreciating his aura as he went on about spreading love and joy to everyone he met. Wrapping his arms around his mates, he would announce – “Yeh mashu hai, mera bhai” with other-worldly pride. And then he would glance at me with pure, unadulterated affection. And at that moment, as a six-year-old, I knew what was in store for me on this journey with him would go way beyond the usual.

I am not sure what made him switch my role from his sister to a brother, and from my given name vanshu to his version of it – mashu, but maybe it was the way he saw me fiercely guard him in every social situation that tried to make him or us feel uneasy in any matter whatsoever. But here’s the deal. 

Not one Raksha Bandhan went by in 21 years of my life when he wouldn’t tie the rakhi on my wrist, going against the tide of the convention without a care in the world. This was the grade of courage he instilled in me – Do as you please in the name of love.

It fills me with awe whenever I flick through the leaves of my memories with him. Uninhibited, he would express himself completely through art. He spent his days and nights sketching the happenings and impressions of his mind. Painting the walls of our home if he felt like it. Who could really contain the energy of an artist now?

I got to be there, witnessing all this and more. I got to be the person he loved the most in the world. I got to be his bhai, his mashu. If I could echo even an ounce of the radiance of his soul, life would come full circle for me. Or that’s how I console myself about his departure from my life that came way too soon.

“Beta, Guddu jahan bhi hai, woh kabhi tujhe akela nahi chodega. Tu jab bhi use man se yaad karegi, woh tere paas hoga. Ise hone se koi nahi rok sakta, koi bhi nahi.”

Words uttered with such igniting passion that seared right through the heart of a grieving sister and sew it back. They resonated with my agony but were delivered to heal.

Thank you Rama masi, your words give me strength when nothing else consoles me about his absence. I am writing this anecdote for Nayi Disha on my brother’s birth anniversary that I celebrate every year with a cocktail of emotions. Ridden by gratitude and awe for the 21 years I was privileged to spend with him, numbed by the bitter truth that he is not amongst us anymore to spread the magic we all need in our lives. My intent with this piece of writing is to offer my presence and counsel for all the sisters and brothers who do an excellent job taking care of their special siblings but struggle to find a psycho-social platform to attend to their own special needs.

I also wish to extend warmth to the pillars of support in my life – Nana, Nani, Amit mosaji, Chunmun masi, Pinki masi, Mukta masi, Vivek mosaji, my cousins and all extended family who offered unconditional understanding and care to bhaiyaa and most importantly, continue to appreciate the beauty and love that he brought in our lives, our family. He loved you all so much, and he made sure he told me that often. Mumma, papa – you have achieved an exemplary feat in your life taking care of our bundle of joy and raising him with and despite all the challenges. I owe my life to the gift you gave me. I love you.

And finally, wherever you are, my love, my bhai, know that your mashu misses you more than these words can ever say. Your presence lingers over me beautifully and will guide me until my last breath.