Moy Moy died one month ago today and I have not been able to write anything about her beyond the odd notes to close friends. What has happened feels so large, so heavy and so overwhelming I don’t know how to approach it. Wherever I go, whatever I am doing – her absence is there like a rock, like a cave, like a black hole. The fact of her death is still so shocking and sudden I can’t bring myself to believe in it.

Walking to work, I walk right into her not-being; waking up at night, I reach out for her not-sleeping. Her stroller is empty, parked on the side of the house, gathering dust. I leave it where it is when I set out for my evening walk and I am walking without her again.

White haired woman pushes young handicapped woman in a blue stroller

Her absence is so large it’s all I can think about and all I cannot speak of. It is bigger than I am. I don’t have enough substance to absorb it. The world feels precarious and fragile. I tiptoe through the house, as if it might crumble into pieces at any moment. I don’t know why there is this sense of danger now, this strange feeling that our protection is gone.

I am not trying to romanticize her, to make her something she was not or pretending now that she is gone that it was easy when she was here. It wasn’t like that.  Moy Moy was our centre. We built our world around her and everything radiated from there. But those who were closest to us knew just what her care entailed. They knew how our nights were, they knew about the freedoms curtailed and the plans we couldn’t make.

It’s easy to pour formula down a tube – once. It’s easy to change a nappy – once. It’s easy, even appealing, to wriggle out of an event we don’t really want to attend by saying “It’s just too difficult. I’ve got a child with special needs.” Everyone nods; everyone sympathizes. Few understand that moments become years, that the work of a day can stretch into a lifetime and that while taken one at a time, each act is manageable, added up and tallied, they all amount to nothing. We feel we have nothing to show for ourselves. Nappies changed; feeds given. Years gone. Decades.

My friend Natasha says “Days are long, months feel safe. But the years, the years seem to be on the run.” We are chasing our years, we are running after our lives, we are hoping that they really do amount to something, that all we are pouring out for these children we love so dearly, so helplessly, is adding up to something significant. Please forgive us when we overreach. We know we are doing it. We know there is nothing heroic about the one tube feed, the one nappy, the one night of broken sleep. It’s the years. The years. The long, long avenue of years.

Now that those years are over, I feel a little as if I am in free-fall, as if the chains I thought were holding me back were in fact a golden safety net, a secret pillar of strength, a small army of guardian angels holding me up, carrying me forward, saving me again and again from perils I didn’t even see I was avoiding.

Cathleen told us about a mystical Jewish belief that in every moment in time, there exist 36 righteous souls – Tzaddikim – who save the world from destruction. No one knows who they are, including the Tzaddikim themselves, and they are never who you would expect.

It would not surprise me at all to learn that Moy Moy was one of them. She blessed our family with a special love that few experience, binding us together, reminding us of what mattered, calling us home.

For us the clearest evidence of all that she inspired lies in the people Anand and Cathleen found as life-partners. In Lydia and Daniel, they chose people who would have cared for Moy Moy as long as she needed it. That’s all you need to know about a person.

Family of seven (older parents, two young cuples, one girl in wheelchair) around a Christmas table

In spite of the difficulties, we always knew how lucky we were to be the chosen ones. My sister told me that we “made it look easy” and I am so grateful for that. Whatever the doubts, whatever the challenges, whatever the fears, we mostly kept them to ourselves. Moy Moy was adored till the end. We have no regrets.

Showing 17 comments
  • Patricia H Viera
    Reply

    Good Morning, Jo.
    I am so saddened by your loss; I have somehow loss connecting with your posts, etc. My deepest sympathies for you and your family.

  • Ann Azevedo
    Reply

    <3

  • John Marsh
    Reply

    Thank you for sharing your story with us. Our hearts are with you.

  • Lea Holst
    Reply

    Dear Jo, i never met you precious Moy Moy, but your words strike deep in my heart for your loss. You are in my prayers and hope some day to see you again. Love you.

  • Lynn Levesque
    Reply

    So beautifully written, brought tears to my eyes.

  • Divya Singh
    Reply

    Dear Jo,

    I may not have had the privilege to know Moy or you in person… but through the years on Facebook I have seen her on my FB wall so frequently and became familiar and attached to her.

    My heart goes out to you.. It must be indescribable to loose a child so precious. You all are in my prayer . Love and regard
    Divya

  • Chris
    Reply

    Made this old man tear up and look sappy in public. But l don’t care, l love my niece.

  • Elita
    Reply

    I waited for that time in the day when all but the whirring of the fan above my head would be the sound to accompany me when I’d sit to read your words, Jo

    It’s a muggy night here in Bombay and all I have are goosebumps

    From my heart to yours, thank you

  • Sheila
    Reply

    Love you so much and have been thinking about you a lot. Lots of love being sent your way. ❤️

  • Joyce Berube
    Reply

    Dear Jo,
    Your story was beautiful and heartbreaking. I have no words that I can say.
    Love you.

  • PRITHI DEVOTTA
    Reply

    Dear Jo,
    I have been following your blog for years now. My heart goes out to you n this time of loss. God be with you on your journey ahead without your beloved Moy Moy.
    With much love

  • Pushpa subramanian
    Reply

    I do not know you or your pretty fairy but my wishes and prayer from the bottom of my heart for you and your entire family

  • Patricia Davis
    Reply

    She was loved! And knew it. That’s all we have in life. ❤️

  • T.P.Singh
    Reply

    You continue to inspire Jo !
    Our daughter Anantjeet played with Moy-Moy when we stayed at your place on our way to Uttarkashi, in early nineties. May God keep us all under HIS love umbrella.

  • Paula
    Reply

    I know your heart is breaking but through your love, your wonderful family and the work of the foundation, Moy lives on.

    Love to you all

    Paula

  • Sanjana
    Reply

    Dear Jo heartfelt condolences. Your journey has been so inspirational. Moy Moy was blessed to have you all as her family. The loss is irreplaceable, the flame will shine bright for time immemorial courtesy your NGO.

  • shrishteebajpai@gmail.com
    Reply

    Dear Jo,

    My deepest condolences. You probably won’t remember me but I was working with PSI for a very brief time in the year 2015. I had once come to your home to meet Ravi ji and had a chance to meet Moy Moy. The meeting changed something in me. The house was infused with a sense of care that I had rarely experienced. What a brave couple was the thought that I left with when I left your house that day!

    However, with time, the memory/ experience faded away but came back unexpectedly. I was on my way to the office (Pune-where I am based right now), I had a very uneasy feeling, and in my head popped a strange thought of Moy Moy passing away. I wondered, oh, well how would your life (two aging parents) be? It would definitely make you sad but wouldn’t it be better that she passes away while you both are around! Wouldn’t it make your life a little easy? does a possibility of reduced difficulty makes the pain more bearable? These thoughts were disturbing, unwanted and I quickly snapped. First, wondering why the hell I am thinking about someone’s death and second, why all of sudden I am thinking about these people from a distant past, people I hardly know! Quickly, told myself don’t I have ‘things of consequence’ to think. anyway, the day went by. I didn’t think about it again. The next day, I had to make some calls to Seema (who works with PSI) to get updates on the process that we are coordinating. She on the phone told me that Moy Moy passed away. I was stunned! I couldn’t believe that just yesterday, I had the thought of her passing away. I shared this experience with people close to me, who were a bit amazed but skirted away from the topic.
    I racked my brains as to why this thought came to me the day she passed away. Why me? Why her? we are not even connected or rather what connects us. I still can’t stop wondering why I had that thought.

    I wasn’t sure if it would make sense to share it both of you but today while reading this I finally decided that I should. why everything has to make sense?

    I don’t know what purpose this sharing will serve! frankly, maybe, it is a way to tell you that my heart aches at your pain. We are strangers but something connects us… strangely enough!

    Please give my regards to Ravi ji. I haven’t spoken to him since I left!

    Regards
    shrishtee

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