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.
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.
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.