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At some point in my life, by the time Rachel was three,
she began to compete with other people
and other things in my life.
And the reason I would say in that case it took--
I don't know, it was really earlier than three;
I was having some good times before then--
but she had infantile spasms and was very, very sick
for a period of time, so we'd kind of gone
on an upward trajectory, really pretty doing well as a family,
and then there was a time she was really sick,
and waiting for her to come back and figuring out
how that was going to be, so it took a little longer
before I could say that my life was pretty balanced.
One of the things I was is I started off by saying
in the beginning of this is that I was a writer of fiction--
not interested in non-fiction.
There was really, in 1983, no like, "memoire craze."
and I was not interested... couldn't imagine writing
a memoire anyhow.
So one of the things I wanted to do when my life was slightly
more in balance was to go back to writing,
and so I went... abandoned what I'd been working on
and I started to write this book, and it had some
boring plot, and it had a subplot about a family
with a child who is less than perfect.
And my agent nagged me to give her a piece,
and I gave her a piece, and she said,
"The main plot of this book is really boring,
"but the subplot's really interesting.
Would you consider writing this as non-fiction?"
And I said, "No.
"What?
I don't know how to do that."
And eventually, I did, for reasons I'll explain
in a couple minutes, and I did because I wanted to write
what life was like for someone else.
I wanted to take somebody else in the front door of my house
and say, "This is what life is like the morning after
"you wake up and hear that your child is blind.
"This is what life is like a month later.
This is what life is like six months later."
I also wanted to write... I wanted any reader to read it,
but I also imagined the person I was-- going through a library,
frantically going through, looking for books that would
give me some reflection of what my life was like,
and so I wrote it for that person I had never met.
The book begins when I'm pregnant,
and 15 of the 18 chapters take place in the first year,
and it ends... the last little piece of the book is really
ages one to four, when she's a toddler.
It does chronicle Rachel's medical and developmental
ups and downs, the infantile spasms and seizures,
the evidence of vision, but it is overwhelmingly
our story... family story.
Something, believe it or not, that I failed to see
until a couple of years ago.
I didn't choose the name "Loving Rachel" or the subtitle
"A Family's Journey from Grief," which I think is not
on the new edition.
I hated the title and I hated the subtitle.
We made many family jokes about "Journey From Grief."
Again, it was only when I started writing the second book
that I started thinking, "Yeah, actually this book
was about loving Rachel-- what a great title."
And in fact, it was about a journey from grief--
from grief to accommodation.
That's what that was about.
I didn't see it.
It took me many, many, many, many years to actually
get the perspective of seeing it.
Well, so shortly after that book was published, I gave a talk in
the Livingston Public Library in Livingston, New Jersey,
and when I finished the talk, I did, you know, a little Q & A
and a woman came over... raised her hand and said,
"Will you write another book about Rachel?"
And I said, "No; absolutely not, under no circumstances."
And she... she had introduced herself as a mother
of a 14-year-old with developmental disabilities.
It's like, "I told the story.
I don't need to write about it anymore."
I thought I had nothing more to say, because at that point
after the book was about, I thought, "Oh, yeah.
"I wrote the story about the fact that I heard
"these awful words--the worst thing I could possibly imagine
"as a person I've described as with no experience
with disability whatsoever."
The worst thing... and I loved her just as she was.
That seemed to me the story.
I had not place to go from there.
As the mother of a 25-year-old, I can see that the story I told
was about... again, was about us.
It was about the beginning... her beginning and ours.
It was a tiny speck in her life-- one year of 25--
and that I hadn't really begun to tell the story
of what happened as I gradually opened my arms.
Because if you haven't done it yet, one day you're going to
open your arms and you're going to let go of your child.
And then one day, you're going to open your front door
and you're going to let your child out of the house--
and I mean this also in a metaphorical way.
Time is going to pass; your tears
will have long dried by then.
It's like, "What tears?
I cried that hard?"
Because you're going to be really busy helping your child
find a place in the world.
For many of us, it does mean rolling up our sleeves
and getting ready to fight, because when you open
your front door, you're asking a lot of people
to look after your child.
You're asking people to be respectful,
to make sure that your child's needs are met,
to enjoy her, to work with her, to find her heart and soul.