
I should probably post something like this every now and then, especially as we get closer to the book release.
Schuyler is my weird and wonderful monster-slayer. Together we have many adventures.
"I don't have sex with my monkey. That's absolute crap," Mr. Crawford said. "Why would I do that? I gave him an audiotape, but it didn't have anything like that on it. It said, 'I'm coming home, I'm coming to get you. Daddy's coming, he's coming to get you,' " Mr. Crawford said.
My love, my love is a mountainside
So firm it can calm the tide
My love for you is a mountainside
It stands so firm it can calm the tide
That's why my love, my love is
A mountainside
My love, my love is an ocean's roar
So strong, so strong that I can't let you go
My love for you is an ocean's roar
It's grown so strong that I can't let you go
That's why my love, my love is
An ocean's roar
My love is longer than forever
And endless as the march of time
'Till ninety-nine years after never
In my heart you'll still be mine
Because my love
My love is a deep blue sea
So deep, so deep that I'll never be free
My love for you is a deep blue sea
It's grown so strong that I'll never be free
That's why my love, my love is
A deep blue sea
Simply put, I believe that the subtitle should reflect the experience of the family, not the disorder. The disorder gets the title itself; the subtitle should express a larger truth. The book is about a little girl and a family (specifically a father, which I think is somewhat unique among the books that are out there), and the experience they have. The father is a little lost and ill-prepared, and the girl is tenacious but without a voice. In the end, the father finds strength, but it is the little girl who perseveres and triumphs. She gets help from her parents and the schools and situations she ends up in, but her ultimate success comes through her tenacity and fearlessness.
The primary elements of the subtitle, then, could be more about the experience of being a father in over his head and more about a girl without words, rather than about a struggle against a disease. Because really, it has never been entirely about fighting polymicrogyria. Polymicrogyria won its battle before she was born, it won simply by existing. The story has been about taking what the monster gave her and finding her way and her voice.
Am I making sense? I don't see this as a parenting book or a special needs book so much as a memoir about a journey. Even if the book gets categorized as "parenting" (which I sort of hope it doesn't but which is WAY beyond my scope of experience or expertise), I hope that it gets marketed as a more universal experience: the world can overwhelm, the people selected to fight the big battles often feel like they are not the right person for the job, and they step up to the plate anyway because their actions determine the fate of those they love the most. And also, the smallest person can hold the deepest wells of strength, deeper ultimately even than those of the persons who set out to protect and save them.
(Schuyler as Frodo? Perhaps overstated, but you get the idea.)
[...]
But if this book carries the right title (and subtitle) and jacket cover, then hopefully it grabs the attention of people who may have neurotypical kids or no kids at all. The common experience of "holy crap, I'm not ready for this" and "the experts are telling us one thing, but we know better and are prepared to fight for it" and "that little person can't even talk, but she's tenacious and in the end can take care of herself and thrive"; THAT'S what I think the book should be about. I don't know if that's the book I wrote, but if it's not, it's because I wasn't a good enough writer, not because I'm wrong.
Wrongfully convicted of killing a young woman in Texas, Cook was sentenced to death in 1978 and served two decades on death row, in a prison system so notoriously brutal and violent that in 1980 a federal court ruled that serving time in Texas's jails was "cruel and unusual punishment." As scores of men around him were executed, Cook relentlessly battled a legal system that wanted him dead; meanwhile he fought daily to survive amid unspeakable conditions and routine assaults. When an advocate and a crusading lawyer joined his struggle in the 1990s, a series of retrials was forced. At last, in November 1996, Texas's highest appeals court threw out Cook's conviction, citing overwhelming evidence of police and prosecutorial misconduct.
And finally in the spring of 1999 long-overlooked DNA evidence was tested and it linked another man to the rape and murder for which Cook had been convicted. Today, Cook is a free man and the proud father of a young son.