MotherTalk Blog Book Tour, Day 5!

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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.)

Today’s Reviews

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!

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20 thoughts on “MotherTalk Blog Book Tour, Day 5!

  1. I finished your book today and saying I loved it seems inadequate! It’s the story I would write if I had your immense talent! My daughter with Ds is now 11 months old and your writing about the NICU brought it all back like it was yestersay! I cried and cried, but they were healing tears because they were tears of connection this time instead of tears of loss. Thank you for your gut wrenching honesty all the way through. I dragged the book with me when I went to get a pedicure because I couldn’t bring myself to put it down and I think the women there must think I am completely loony because I couldn’t stop weeping! Thank you for the connection, but also the inspiration that your book provided to me.
    You are a wonderful writer, THANK YOU!!!

  2. I’m halfway through reading your book and I love it! I hope Emily Perl Kingsley is another person I get to meet at the convention in Boston this summer.

  3. Another lovely story. Shortly after Nicky was born we joined the local DS association. In the first newsletter was a lovely story by a mother about being at midnight mass in Rome and being picked for a private audience with John Paul II in part because of her son with DS and the theme of the essay was some of the good things and people who come into our lives because of DS. The essay came at a time I really needed to hear those things. I recently met the woman who wrote this, as her son is at Nicky’s school. She is lovely and it’s neat to meet and thank people who’ve helped you through their words.

  4. Finished it today. I couldn’t put it down! Your words truly touched me, Jennifer as I could easily identify with them. I found myself wishing there were more when I was finished reading it. I do hope you will continue to write about your story and Avery’s story. Perhaps some sequels are in order?

    Thank you for sharing so much of yourself with the world. It is truly a gift!

  5. Welcome to Holland is one my favorites. First as a special education preschool teacher, then as a parent with a chid on the Autism Spectrum.
    Can’t wait to get my hands on your book!

  6. Jennifer, is your book available at bookstores too or only online? I want to get a copy to put in our support groups library(after I read it of course!) I can’t wait to get one 🙂

  7. Well, I am glad that Alice didn’t have a long anddeep feeling of sadness, really I am. But I think there are WAY more of us that did and that is why your book speaks to so many of us!!

  8. hi Jennifer, I’m finally heading to the beach tomorrow morning — I’ve been so busy getting my house somewhat organized, that I haven’t dared read anything but the first paragraph of your book because I know I’ll get sucked in and not be able to put it down (as it always happens when I start reading any of your writing). Anyway, today is my 4th year anniversary — 4/4/04 — and I’m hoping that brings me some luck for the gift card! 🙂

    Thanks for the daily entries — it’s been a great week for me and I hope for all of us here, especially you!

    Sandy

  9. Sorrow, grief, love, joy: these are not things to be measured, to be judged by others. It is not for anyone to say–that is enough or not enough–each of us must find our own way.

    The story you tell, Jennifer, is inspirational and uplifting and brutally honest. And perhaps that is difficult for some people to process–or simply not the kind of thing they want to read. But I see shadows of every mother’s hopes and fears on these pages.

  10. What a beautiful way to resolve the question of the honorarium! And I’m glad Carey won! I was thinking about her this morning and wondering if I should mail my copy to her!

    “And Emily’s words had fed me; they had given me strength and sustenance when I needed it.” This can also be said of YOUR words, my friend. Having become a slavish devotee of your writing and feeling so drawn to your family (geez, I hope I don’t sound like a stalker! LOL), I find myself wanting to pop over to sites such as Alice’s and tell them how wrong they are! They need to read more of your blog and other writings to understand.

    And, frankly, they need to accept that not everyone deals with grief and disappointments in the same fashion. So often, we don’t always know what we don’t know…and struggle to find our own answers. There is no time table and no statute of limitations.
    xoxo

  11. I loved reading your interaction with Emily Kingsley–she and her late husband Charles opened their arms and hearts to us nearly 28 years ago when my brother Matthew was born, and they hosted the annual families association part at their lovely house each year, something we always looked forward to. They are such wonderful people, and we were grateful to them for their friendship, support and leadership.

    Anna

  12. Hi Jennifer,

    I am currently reading your book and am having a hard time putting it down. It is excellent! I want to give a copy to all of my friends and family! It is wonderful to read about your experience. Thank you so much for writing this.

  13. We were directed toward Welcome to Holland a couple months after Wil was born. It was among the first encouraging pieces we read that started me wondering what sorts of adventures lay ahead. A friend penned it in her beautiful script and framed it for us and it now hangs in our hall.

    What a week this must have been for you! I hope it has been full of good things.

  14. I can’t wait to read your book Jennifer and love the title. I’m mostly a lurker nowadays on the T21 site and got directed here from Carey’s blog as my family was fortunate to meet them last summer at NDSC and immediately fell in love with Miss Chelsea. Thanks so much for writing this…for sharing your heart with others…and sharing your stories of talks with Martha Sears and Emily Kingsley, what an amazing journey your son has brought you on. I love it! Our children bless us in so many ways and while I do think God has a plan in giving us the children he does, I also believe that we aren’t any more special than any other mom, for all of us it is what we do and it is our children that make motherhood such a wonderful gift. Many thanks. Lisa, mom to Jamie, 7 (and an extra chromosome) and Cori, 5.

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