Saturday, October 30, 2010

The Book I Cannot Write

I spoke last week at a fundraiser for an organization that serves adults with developmental disabilities. Adults like my two sons who live in one of the organization’s group homes and work at one of their sheltered work sites. I spoke about trying so hard for so many years to find a cure for my autistic son...and failing. I spoke about becoming a foster parent to James’s classmate Dan when Dan’s parents died and there was no foster family qualified to take him because of his autism. I spoke about being a single mother with two autistic teenagers, knowing that like Dan’s parents, I, too, would be gone one day, and how terrified I was about what would happen to them.

I spoke about sleeping easier these days knowing that they have a good life in the care of an organization that provides more than I ever could by myself. They work and go out with friends and do everything that anyone else does, with the help of caring and trained staff. I see them most every week, unless they are too busy and ask me not to come. I see that they are thriving.

I spoke about hope. I hope I have done the best I can. I hope that Dan’s mother looks down from heaven and believes that I have honored my promise to her to care for her son.

It was a speech of joy and triumph, and immense gratitude. And yet when I spoke, my throat choked up and my eyes filled with tears. My voice quivered as I told my story. The sadness is never very far away.

I write about James and Dan sometimes, little snippets of the story that began 23 years ago and will continue all my life, and theirs. People tell me I should write a book, that it would help other parents. Perhaps it would. I don’t know. But it is a book I cannot write.

I’ve learned that denying my feelings over the years, being afraid of the enormity and intensity of them, not only deadened the pain, but also deadened the joy. The first noble truth of Buddhism is that life is suffering. Our natural instinct is to avoid suffering, to run from it, to escape from it. But we can’t. The four noble truths do not offer a way out, but rather a way through. When my pain eventually broke through, when I got too soul sick to fight it anymore, I discovered that the released pain brought with it into the light the exquisite joy of life, here for us in unlimited abundance, always.

I’ve made my peace with sorrow. It doesn’t go away, but it isn’t scary anymore. I recognize it as the key to unlocking compassion. And compassion is the key to sweet, sweet happiness.

I can’t write the book I’m asked to write, about raising my sons. I’m not sure why. Perhaps because writing little pieces of the story here and there, as I do, does not ask me to leave the present to revisit those dark and deadened times for the extended periods which a book would require. Perhaps it is a story that has already been told, in ways more meaningful and eloquent than my writing skills permit. Perhaps the time for my writing that story is simply not yet. Or perhaps the time has passed. I guess I’ll find out. So be it.

Related posts Mad/Sad/Glad Game, Game Change


  1. Your life is the book.
    James and Dan's life is the book.
    Your daughters' life and how it affects them is the book.
    All those that you and your children touch with words, actions, prayers, emotions... that is the book.
    ... and your book is still in the process of being written.
    ... so many lives are being affected by this book without pages.

    Perhaps someday if you write a book about these things it will WITHOUT A DOUBT help many people.
    But that is up to you and where God leads you.

  2. I can see where you wouldn't want to go back and revisit when they were younger. I'm sure it was hard being a single mom in general. I'm sure your talk touched many who were at the fundraiser.

    I can see where you would think that perhaps you are not unique among parents with kids who have the same disabilities. But to be a single mom and than adopt a another special needs child is amazing. There are two parent households who are wondering how they can cope and so on. You did it with one hand tied behind your back. That would give people hope. :)


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