My last story for the week is about Emily Perl Kingsley. She’s the author of an essay called, “Welcome to Holland,” which is the inspiration behind my book. Her essay was the first thing I came across that offered me hope. I remember thinking, Okay, I’m here in Holland. Now, I need to learn how to get around. I need a road map!
I sent her a copy of my manuscript when it was nearly finished, because I wanted to be sure with her that it was okay to use a title that was a reference to her work. And too, I was hoping to be able to include her essay in my book, which in publishing is called “securing permissions.”
I mailed off the pages, then waited. It was one of the most nerve-wracking weeks of my life. I tried to act as if it was no big deal, but I kept dropping things (Crash! There goes the ketchup!) or bursting into tears for no good reason (Look at these shoes! All the kids’ shoes have gotten so big! When did this happen?!)
The only cure for it was hearing back from Emily Perl Kingsley, which I did, and she was warm and kind and funny. I don’t know why I expected any different: her whole life has been about creating and love and children and family, all things that are very dear to my heart, too.
Regarding the permissions, she explained that she usually gives reprint rights to not-for-profits free of charge, but that in commercial situations, she asks for an honorarium. She would leave the amount up to me, based on what seemed fair.
But oh, how to decide?! Her essay has touched the lives of thousands: What about a dollar for every family with Down syndrome? That would be $350,000. What about a penny? Even just a penny is $3,500. How can you put a price on hope?
I asked my publisher for advice; I discussed it with Tom; I brought it up with friends. Finally, we decided on this: the amount we would normally spend on a week’s worth of groceries. In our family budget, food is the highest cost. And Emily’s words had fed me; they had given me strength and sustenance when I needed it.
A few weeks later I heard back. When she realized the honorarium would be coming from Tom and me (not the publisher), she wanted to return the check. She told me I could use her title, and her essay, for free.
But I wanted her to keep it. Money is one way we value things, as a society, and I wanted her to know how much I valued her work. I suggested she use the money to buy copies of her son Jason’s wonderful book, Count Us In: Growing Up with Down Syndrome, to donate to libraries. And that’s what she did.
It’s MotherTalk time! Yesterday’s winner of the $20 Gift Certificate was Carey of Dream Big. Congratulations! (And if you didn’t win yesterday, today is your last chance! Enter by leaving your name in the comments.)
Gaijin Mama writes about cultural assumptions: that children with Down syndrome are always happy, that parents of children with special needs are saintly, and that parents who choose abortion are doing so to avoid suffering (the parents’ and the child’s). She feels these stereotypes are comfortable and don’t require us to think too much. She writes, “Until very recently, the lives of families with special needs children have been pretty much absent from literature. Reading this book is like stepping into a new frontier.”
Carey of Dream Big hopes to have time to read in the hospital, as Chelsea undergoes her 6th and final round of chemo. She includes my book in her list of favorite things.
Alice of 3-Ring Circus didn’t relate to the depth of my sorrow and felt that it lasted too long. She writes, “I’m still having trouble wrapping my head around fact that Groneberg didn’t call her state’s early intervention program shortly after her babies were released from the NICU, but waited until they were 10-months old. To me, that delay meant precious months were lost.” She appreciated the resource section, but doesn’t know if she would have continued reading the book, if she weren’t reviewing it for MotherTalk.
Melissa at Making Things Up saw the book as not so much about charting Avery’s progress, but about charting my own progress as a mother. She writes, “If you could talk Jennifer into inviting you over for a cup of tea, Road Map to Holland is the story I imagine she’d tell you, about the path she’s taken and about the supportive family, friends and therapists who helped her to get where she is now.”
Kacey from Ella Grace with the Pretty Face writes about seeing herself in my story, and feeling familiar with the emotions and the process of working through them. She, too, is experiencing a looming guilt just as I did, over struggling with the diagnosis, but finds comfort in the fact that I reached a place of forgiveness. She writes, “I find myself sad tonight that I have completed [Road Map to Holland], as I always am to finish a truly good book.”
UPDATED TO ADD that the 5th gift certificate winner is Melissa, of Banana Migraine. Congratulations!