I am reading Far From The Tree by Andrew Solomon, and it is a slow, painful process that leaves me alternately breathless and buoyant. I feel as if I have been put through a threshing machine at one moment, sent soaring into an entirely different universe the next.

The book is about children who are so different from their parents as to be almost unrecognizable in some fundamental way, yet who, by the strange alchemy of parenthood and nurture, become everything and more to their parents. Straight parents whose children are gay. Ordinary-sized parents whose children are dwarves. Law-abiding parents whose children commit horrific crimes. Bright, high-achieving parents whose children have disabilities.

Ravi and I are in the last category; our daughter, Moy Moy, put us there. And that fact has catapulted us into a universe no one wants to belong to: a universe in which people you have nothing to do with feel qualified to pronounce on the quality of your life and the life of your child.

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The chapter on disability starts with the poem “Taking The Train” by Elaine Fowler Palencia, a poem that chillingly speaks to the relentlessness of caring for a child like Moy, the toll it takes on families and the difficulty of squaring it in a world that values productivity over all else. It imagines a hauntingly real world that might act in the so-called interests of society to do away with the “unfit.”

My heart thudded as I read it. I shuddered, turned away – then read it again. It is my darkest nightmare, my most unbearable fear. And it never, ever goes away, because there are people out there – we meet them every day as we take our evening walk, we read about them every morning in the newspaper – who do not understand Moy Moy as a person with a life of value. Who do not understand that she is cherished and has people who would do anything to protect her.

But the most gripping thing about the poem is that it captures the way we parents shift back and forth between two extremes ourselves: Most days we love our kids to bits, just as they are. But there are dark corners of our souls in which we too, if we are completely honest, wonder about our children’s intrinsic worth, our own frozen dreams, and what it all adds up to in the end.

Palencia’s poem is but a small part of Far From The Tree, and the rest of it is as compulsively readable, engaging and difficult; the chapter on disability took me more than 10 days to get through because of what it stirs up inside me. The stories in it are the stories of Americans, who tend to be, perhaps, more open about their inner worlds, more willing to share thoughts we prefer to hide here in India. Admitting to despair or anger feels disloyal to me, yet I have felt both. The book keeps pushing me toward reflection and an honesty often difficult to reconcile with the life I have built as a disability cheerleader.

The parents Andrew Solomon spoke with are all profound. Eve, mother of Alix, a child like Moy Moy, says: “No one understands what it’s like; even I know only what it’s like right now, and that’s all. When you came to interview us, I thought, ‘Well, I’m very happy to talk to you as long as you promise not to ask about the past or the future, because the present is the only thing I’ve got down.’” Other parents in the book have insights both startling and stunning: “I cannot live with her and I cannot live without her;” “The idea of help was as overwhelming as the things we needed help with;” “When he went away to camp, I felt sad about not being sad.” As a parent myself, I know we all have such revelations; they come with the territory of lives lived on the edge.

I wish Andrew Solomon would interview me. I do have fleeting glimpses of truth and beauty as I look after Moy Moy (26 years now!), like the Sunday morning I once paused to realise that I was happy in that very moment and that it was a choice, not a reaction to circumstances. But no sooner had the thought occurred than it disappeared again into the endless round of diapers and tube-feeds; of seizures and boredom; of pulled muscles and creaky wheelchairs. It got lost in our two hopelessly, blessedly, intertwined lives.

I have a feeling that Andrew Solomon would help me make sense of it all, that he would create the white space, the quiet pool, the little mountain I need to see it in relief. He is an odd duck himself – gay, highly artistic, intellectual, prone to depression – and I like that about him because we are all odd ducks, one way or another, though most of us don’t see it in ourselves.

I am not done with this book, not by a long, long shot. I did not mean to get quite so wrapped up in it; I did not mean to let it catch me by the heartstrings and refuse to let me go. But then, I didn’t mean to have this life, either. It caught me and entangled me and now it will not let me go. But I love my life, for all of its demands and difficulties and for all it insists that I confront and make a space for. I love this book because it does the same thing.

I am still working up the courage to read and live the rest of it.