That Extra Chromosome which makes her ‘Out of the World’!

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“The earth, together with all of its countries and people”, is what Oxford dictionary has to say about the word “World”. The ‘Earth’ represents the external gaze to this spherical entity hanging in the Universe, while ‘World’ is a perception from within (an inside out look). ‘Perception’, because it provides the flexibility to extend it beyond geographical entities, to the people, society, cultures etc. It therefore helps to accommodate numerous definitions of the world, which otherwise has inherent subjective nature.

What I am really trying to establish is, ‘World’ is not exactly what we see, but is a psychological phenomenon. The continents, the countries, the buildings, the bridges, the rivers, mountains, the GDPs, the markets, the inventions, the loved ones, the enemies, all constitute our world.  We all are slaves of our worldly definitions. We live by our definitions, we struggle to standby our definitions, we laugh, cry, emote over our definitions and at last die within the parameters of our definitions. Throughout our life we learn and then propagate the definition of ‘desirable’. Any variation would be termed abnormal. Abnormality can attract varied emotions based on how it fits or rather misfits the defined parameter of the worldly normal.

Here is my ‘Out of the world’ account from my life, pick your worldly and unworldly components:

The news broke to me as soon as I returned from office, it is a baby girl. Juhi was making tea for me while I sat on the kitchen platform and we shared our relief for this news and the fact that baby and the mother are doing ok. All of us were very nervous considering the pregnancy complications Bhabhi (sister in law) had to go through. She went through a lot during this whole period. The baby was apparently weak but nothing serious as we gathered from everyone. We all were rejoicing the fact that everything ended well and were thanking God, there was even sweet distribution in the hospital and many relatives were astonished to notice the celebration following birth of a baby girl. In all this though, Mummy was still nervous for she had sensed something which none, including the doctor had noticed. Mothers have a unique sense of responsibility for almost everything involving the family which gives them that element of sixth sense. Mummy has this habit of keeping things to herself, especially the worrisome ones, until it is unavoidable or is resolved. As soon as the baby was born, Mummy was quick to spot certain symptoms apart from the fact that she did not cry. This was enough to make her enormously nervous. The good news was yet to reach her. She contacted the doctors and they too expressed their doubts. In just couple of days it was clear to her that the baby is a ‘Down Syndrome’ baby. She did not share this with anyone except Papa and partially to her daughter Juhi. She did not have enough courage yet to share this with Vidhu Bhaiya (Elder brother) and Bhabhi, the parents of the baby. Someday it was to be revealed to them and it did not take too long. It was only few weeks after the birth, while Bhaiya was routinely scanning through  the TV channels through remote, something stuck him instantly on one of the random channel. It was a health program and the doctor was explaining Down syndrome symptoms. At times one wonders, how suddenly he or she is familiarized with a completely strange thing for the first time and then it keeps on coming. Those ten minutes on TV would remain the most intensely attentive moments of his life. It did not take much time for him to reach BHU hospital with all the medical documents of the baby which so far he has not paid attention to. The inevitable happened at last, and he was now aware of the undeniable truth about his share of heart beat. After few moments the frozen him, loosened and he respired to sense the life, he saw people around in the hospital doing their business but he only wanted to immediately reach to his baby girl and grab her, hide her into his arms, close to his heart to protect her from everything.

Few initial weeks were completely engrossed with the ‘why us’ sentiment. In the meantime the baby got her name ‘Chhavi’, the most pronounced word in the family for the lifetime. She was still very weak and everyone’s  look on her continued to have care and protection than an element of love, let alone a blissful interaction. The ‘world’ had started disbursing their responsibility of expressing sympathy. There were some genuine empathy, some social formalities and some blunt expression of pity almost declaring loudly, she is not welcomed. Some cursed the doctors, for not finding in time so that she could have been aborted in time. She was certainly not fit to the worldly definition of ‘desirable’. All this while, Papa was the only one who would play with her, cheer her without much response in return with the patience and hope, comparable to pacific ocean. No doubt he is a true Hanuman Bhakt !

While Bhabhi was getting ready for the daily routine and simultaneously checking out the kitchen, Vidhu Bhaiya was still lying on the bed. He was little lazy today, he slipped himself a bit towards Chhavi and laid on his sides, adjacent to her and started caressing her. Suddenly her eyes twinkled and she made her first straight eye contact with  her father. That momentary gaze of her pierced through his heart and instantly reached his soul. That was the last day when anyone in the family was worried, sad or with tiniest of despair, of the fact that Chhavi is different. Every single day since then, has been celebration.

She is the most blissful character I have ever witnessed, always happy, smiling giggling. When you go to her wanting to interact with her, she would come very close to you, would look straight into your eye for an extended moment and then you realize the squinting eyes are pouring divinity, saying thousands of words instantly. You just cannot look away, you would feel arrested. In no exaggerating terms, she is the one in whom I have sensed the possibility of God and has helped in restoring my spiritual quest.  We celebrate Chhavi every moment and thank God for choosing us, rather blessing us. Juhi once showed me an article mentioning a couple with a down syndrome child, who later adopted another down syndrome child. They said, one has to have such ‘out of the world’ child to understand how blissful it is. We looked at each other and only smiled for finding such a similar emotion which we would never be able to explain to anyone.

Chhavi is 8 years old now. In all our celebrations, we all are conscious of our worldly duties to train her with worldly skills to get her acceptable to the world. But believe me, she is very slippery, she manages to slip through with her squinting and smiling eyes, whispering “I have that extra thing making me ‘Out of the World’, isn’t it”. I say yes, you are my darling!

 

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Out of This World

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24 Comments Add yours

  1. Suzanne says:

    This is an absolutely wonderful account of difference. We have an autistic boy in our family. He tests us all but he teaches us all the time about unconditional love.

    Liked by 2 people

  2. Kapil Kaushik says:

    Out of the world 👌🏻👌🏻

    Liked by 1 person

  3. Shreya Vohra says:

    Amazing post! Chhavi is adorable🌸

    Liked by 1 person

    1. satyanveshee says:

      Thank you, yes she is our teacher for how life is lived.

      Liked by 1 person

      1. Shreya Vohra says:

        No surprises there! You’re amazing people for understanding this✨

        Liked by 1 person

  4. MythRider says:

    It’s love that makes the difference. The love your daughter gives the world and how the world returns that love.
    The real difference is the love of good parents.

    Liked by 2 people

    1. satyanveshee says:

      Thanks for your kind words. She is actually my niece but I feel like she is my own daughter, may be more than that.

      Liked by 2 people

      1. MythRider says:

        The love of uncles are just as precious.
        May you receive more love than you give.

        Liked by 2 people

  5. MythRider says:

    Reblogged this on MythRider and commented:
    Love conquers all.

    Like

  6. brenda says:

    Are the images within your writings your creative work as well? Beautiful and moving

    Liked by 1 person

    1. satyanveshee says:

      The pictures are clicked by me but there is one portrait which is made by my sister. She is a painter and has gifted Chhavi’s portrait to us on my marriage anniversary.

      Liked by 1 person

  7. brenda says:

    Your writing of your connection with your niece speaks of a deep love…an exchange of connection ‘out of this world’. My inital read of your beautiful writing imagined you as the father.

    Liked by 2 people

    1. satyanveshee says:

      I am humbled for your comment. It is a great complement.

      Liked by 1 person

  8. Rupali says:

    A truly ‘Out of the world’ entry. Your words and Chhavi’s photos make it so special. Good wishes to her.

    Liked by 1 person

  9. Pia Majumdar says:

    she’s soo cute 🙂

    Liked by 1 person

  10. amoralegria says:

    Very touching story beautifully written! Surely Chhavi knows how she is loved and held dear.

    Liked by 1 person

    1. satyanveshee says:

      Thank you so much! She surely knows that she is a gift to us. She only knows to spread love and happiness all around, that too in abundance. She likes attention and is loving for being celebrated by beautiful people like you.

      Like

  11. amoralegria says:

    Reblogged this on Wanderlust and Wonderment and commented:
    An amazing story beautifully told.

    Liked by 1 person

  12. satyanveshee says:

    Reblogged this on satyaanveshan and commented:

    Today is celbrated as Down Syndrome day. My ‘out of the world’ Chhavi is there as well.

    Like

  13. DSPhotographyDA says:

    I loved this! Being the aunt of a niece with Downs Syndrome I can relate to how blessed one feels to have them in your life. So much love and joy in their eyes and heart…I wouldn’t trade my niece for anyone, or anything in the world.

    Liked by 1 person

    1. satyanveshee says:

      Thank you for your comments. We are a different species with someone with that extra chromosome in our life. Many a times I feel, I cannot make others understand how blessed we feel, how beautiful it is to have them. You just become a better person just by having them around. I am sure you would agree not only they are different or special, we too become special by virtue of having them in our lives. I feel divinity in their presence.

      Liked by 1 person

      1. DSPhotographyDA says:

        I definitely agree. I wish I could see her more times during the year than I get to, but yes, I do feel like a better person being around her.

        Liked by 1 person

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