Road Map to Holland is one of those book group discussions where we have the author present (because she is me!). If you have any quesions about the book, or about how the book came to be, ask me here and I'll do my best to answer.

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Jennifer Graf Groneberg

Hi Jennifer,
Thanks for doing this book club. In your book, you mentioned many other books about Down syndrome that you had read one being Expecting Adam. When you mentioned the book, you said you had felt some of the spirituality that Martha Beck mentioned. I was wondering what you meant by that. Were you referring to the woo-woo cards again or was it something else?[/u]

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Mom to Three
Payton (2004)
Braydon (2006)
Bryce (2008, DS)

Hello, and excellent question!

One funny coincidence was that in my stack of DS reading by my bedside, Martha Beck's Expecting Adam and Pam Vredvelt's Angels Behind the Rocking Chair were back to back. So in my mind, they are forever connected, like opposite sides of the same coin. Each author used faith (Vredvelt, Christianity, and Beck, a more free-form spirituality) to attempt to describe what was happening to her.

Up to that point in my life, I would have described myself as a by-the-book Presbyterian. But nowhere in my Sunday school upbringing had anyone ever mentioned that God might someday send me notes on hospital cafeteria trays. So my own thinking shifted a bit, opened up a little, to allow for these things I didn't know about. That would be the woo-woo cards, and the meaningful hug, and even the part at the end of the book, where I tell Claudia that I miss it, and she tells me (basically) to look closer.

And I can say that this "opening up" has extended to a lot of areas in my life.

Thanks for asking!

xo

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Jennifer Graf Groneberg

Do you think you will write a second chapter?

Meaning... Now that you have navigated through the birth, diagnosis, and up to EI, will you write about IEPs, MFE's, friendships made bacause of Ds, struggles maybe with therapies and the financial side of raising a child with special needs, how your other children have changed because of their brother.... and so on?

Also on a side note... I love the last line of your book "He is my son".

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Eli
Mom to Abby (DS 10/21/03), James Thomas (01/31/06), Katie (08/12/08.)

Eli, that's a terrific question. I know, when reading my book, sometimes people think, "But what happened next?" Some of that is because of all the support material at the back of the book--you're reading along, you still think there are a lot of pages left, but then the book is done! And too, I know people want to keep following us, especially Avery. That really touches my heart.

But I ended where I did because it marked the end of my transformation--I went from a woman who didn't know what to say, to a woman who knew exactly what to say. As it happens, the answer was very simple--Avery is my son. But of course, there's a whole world in that statement.

Also, I felt that for those early years, there are so many similarities in our experiences, when our kids are babies, and mostly doing baby things. But as our babies grow, their personalities emerge, and each family soon turns into the best expert on their own child (no more need for a road map. We are the tour guides!).

Having said (all) that, your point is a really powerful one--that there is still a journey ahead, for me and for all of us, and it's good to have fellow travelers that you're in touch with along the way. I'll keep it in mind!

xo

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Jennifer Graf Groneberg

pease do!

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Mum to Hannah (ds) and Kit 15/10 /04

please do!

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Mum to Hannah (ds) and Kit 15/10 /04

I just want to say I am really enjoying this discussion. I really enjoyed the book. I read it over 1 weekend. I couldn't put it down. It's a really neat to be able to 'talk' to the author. Seldom do you ever get a chance to ask questions about a book you read.

I might have to pick it up and read it again....so I can ask more questions!!!

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Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

DanielsMommy, I hope you do! It's fun for me, too!

xo

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Jennifer Graf Groneberg

I have a couple of questions for you.

Were you a writer before your son came into your life, or did this book just bottle up inside you and come out?

Was there anything you thought about putting in the book but decided not to?

This book is very much your journey. What was your husband's journey like, and what did he think about you writing the book?

What about the rest of your family? Did they all read it? Were they surprised about how you felt? One of my girlfriends read your book, and she said she was surprised how extreme your reactions were, and that she didn't think mine were that strong. In fact, she was wrong, lol.

Did you ever think you'd be a celebrity in a community, lol?

I know that in my mind, for me, Down syndrome has added more to my life and to the life of all of us than it has taken something away, which is something I think that all of us fear when we find out a child has DS. Have you found the same thing?

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Excellent questions!

Here are my answers:

I was indeed a writer before Avery was born, but I hadn't been working much since the birth of my first son, Carter. My BA is in writing, and I'd worked for an advertising agency, a newspaper, I'd written corporate newsletters, online content, ghost written product reviews. When I became a mom, my writing took a back seat.

The decision to go ahead and write a book about Avery was one we made as a family...Tom and I knew the time it would require, and the committment it would take, and that those things would impact our family life. Tom is a writer, too, which made our discussion about the possible road ahead, if we were to take it, easier.

My personal relationships in my life are most important to me, even more important than my writing. Whenever I write about someone, I tell them I'm going to do it, I ask if it's okay, and then when I'm done, I show it to them. If there is anything they'd like changed, or taken out, I want to know before it goes to print. So far, no one has had anything but positive reactions to what I've had to say, with one exception: "Cathy." I wasn't able to contact her, which is why I changed her name.

I mentioned that Tom is a writer too, and he wrote about his journey as the twins' father in a book called ONE GOOD HORSE. A reviewer read both of our books and said you'd never guess we were writing about the same life! I love that! It shows what a wide range there is to the human experience, and to our expression of that experience. It reminds me of something a writing professor once told me: there are a thousand ways to tell a story.

I don't think of myself as a celebrity...I think of myself as an average mom, who happened to have this training and experience that allowed me to tell our story, a story I share with so many other moms, a story that connects us, and hopefully gives us strength. I feel very grateful to have been able to fulfill that role, but I didn't do anything more remarkable than anyone on this board does everyday.

I absolutely agree with your last statement, and I couldn't have said it better. I wish I'd known, all those years ago, how thankful I'd feel for this experience. It would have saved a lot of time, and a lot of tears.

xo

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Jennifer Graf Groneberg

Thanks for the answers.

Just curious...you say "The decision to go ahead and write a book about Avery" when in fact It hink the book you wrote was about Jennifer. Did your original concept for the book change as you were writing it?

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No, you're correct! It's a book about me, my mother's journey. I misspoke--I should have written, "a book including Avery." And all the other children, too...it's something we considered very seriously. The idea that I'd be telling their stories, too, without their consent. Tom and I decided the benefits were worth the cost.

xo

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Jennifer Graf Groneberg

I don't have a specific question about the book at this moment, but I want to say OUT LOUD that Jennifer's book (as well as Gifts) was the most important thing I read in those precious early months. There is nothing more frightening than a diagnosis with which you have no experience, only misconceived notions. I received a 4" thick binder from the hospital on all the things that may go "wrong" with our child. It's as if they were letting me know he's broken before he even has a chance to leave the hospital. The binder is collecting dust on my bookshelf for when I may need it. Road Map to Holland allowed me to feel -- to have words put to those feelings, to validate my awkward feelings, to show me that I'm not alone and everything WILL be fine. Every doctor's visit we had, I kept waiting for the "really bad news." It never came. John Michael is now 15 months old and we are all in awe of him. He has already touched more lives than all of us combined and will continue to show people around us that there's nothing to fear. He's such a huge blessing. We could've saved ourselves so much worry if we'd only known. Jennifer, we read so much about Avery, of course, because of his Ds, but how are Carter and Bennett with him? My older kids adore their little brother!

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Nick (12), Greta (4), Anna (9), John Michael (20 mos.)

Monica
www.monicacrumley.blogspot.com

Thank you, Monica! What an awesome comment, so full of encouragement and support, and I appreciate it so much.

And yours is an excellent question about siblings--I know that was a recurring theme in my book, the worry I had about how Avery's life would impact the lives of the other boys. And now, nearly six years into this journey, I can say it's been very positive. Avery is the heart of our family (we all love him so much!) and I think he really brings out our best qualities.

The other day when we all were out and about, a man stopped me and wanted to talk about Avery (you know what I mean, how sometimes people catch your eye or stop you and you can tell they want to talk about DS). He was kind, and curious, and I had plenty of time, so we talked a while, and at the end of the conversation he said, "You won't have to worry about Avery joining a gang, or getting into drugs, or any of that."

I thought about what he said, and agreed, it was probably true. I added, "I think Avery will help his brothers avoid those things, too. I think they are already developing an appreciation for the gifts they have, things many kids take for granted."

And finally, I don't think my family is particularly unique in feeling that the sibling relationships have been positive. I had the opportunity to attend a sibling workshop presented by Brian Skotko in Boston last summer at the NDSC. He cited research that indicated these same conclusions--that siblings of kids with DS can find the experience to be a good one, one that teaches compassion and empathy and responsibility. Here's a link to his website, and some of the papers he's published including one on sibling relationships:
http://www.brianskotko.com/index.php?option=com_content&task=blogcategory&id=4&Itemid=7

xo

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Jennifer Graf Groneberg

Thank you for doing this Jennifer, I am really enjoying it.

How long did it take for you to write your book?

oh, and also, I loved how you described to your oldest son what it means to have Ds. That is exactly how I explain it to small children Thanks.

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Ellen, honored to be married to Andy since Feb 2003 and mom to Ellie (08/21/05) Nina (05/01/06 CP) and Nichole (10/02/07 DS)
www.elliestumbo.blogspot.com

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
God does not make mistakes

You're welcome, Ellen! Thanks for the thanks, and thank you for participating!

So, to your question: it took me a little more than two years to write this book. I'm a very slow writer, not prolific my any means, so that factored in. Plus, I wasn't ready to begin writing about the experiences of those early years until I felt I had a more clear perspective on them, which for me, came with time.

I spent about 6 months trying to find the right publisher, and editor. Then I spent the next year working. I wrote when I could, in and around the kids' schedules, sometimes in the early mornings, even late at night. It was a busy time.

When I turned in the manuscript to the publisher, the next year was revising and copyediting and other things, mostly in the publisher's hands, such as page layout and design, and choosing the cover.

Looking back, I'm a little amazed that it actually all worked out, but as I say in the acknowledgments, I didn't, by any means, do it alone. I had lots of help along the way.

xo

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Jennifer Graf Groneberg