Road Map to Holland: How I Found My Way Through My Son's First Two Years With Down Syndrome [Paperback]

Jennifer Graf Groneberg (Author)

Book Description

Release date: April 1, 2008

An exceptional memoir that provides emotional insight and practical advice.

It's like planning a trip to Italy, only to get off the plane and discover you're actually in Holland. You need a new road map, and fast...

When Jennifer Groneberg and her husband learned they'd be having twin boys, their main concern was whether they'd need an addition on their house. Then, five days after Avery and Bennett were born, Avery was diagnosed with Down syndrome.

Here, Jennifer shares the story of what followed. She dealt with doctors-some who helped, and some who were disrespectful or even dangerous. She saw some relationships in her life grow stronger, while severing ties with people who proved unsupportive. And she continues to struggle to find balance in the hardships and joys of raising a child with special needs. This book is a resource, a companion for parents, and above all, a story of the love between a mother and her son-as she learns that Avery is exactly the child she never knew she wanted.

Editorial Reviews

From Publishers Weekly

Montana wife and mother Groneberg traces in her tenderly moving account the life-changing realization after the premature birth of her twin boys that one of them, Avery, has Down syndrome. Utterly unprepared for the emergency C-section of the seven-week-early preemies, Groneberg and her writer husband, Tom, the parents of a four-year-old, are devastated by the news about Avery, and they must gradually alter their easygoing future plans about raising their kids. They reject the notion of adoption, suggested by a well-intentioned nurse at the hospital where the babies are ensconced in the neonatal intensive-care unit, and embark on an exhaustively trying, ultimately enlightening journey to care for the needy babies, especially Avery, and educate themselves about his condition. Rising from the shame of feeling that their family is broken, and letting slide hurtful comments by a grocery-store clerk or neighbor, Groneberg devoured books and information from the Internet, and began to foster their son's development by seeking out physical therapists and specialists. Small gains in Avery's motor skills were causes for celebration, and the beginning of speech the greatest gift the parents could ask for. Groneberg affectingly delineates these gradual, hard-won stages during Avery's first year toward love and acceptance. (Apr.)
Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

Review

“Rich with honesty, wisdom, and a deep appreciation for every day miracles, Road Map to Holland is a thoughtful, moving meditation on the struggles and joys Jennifer Graf Groneberg and her family experienced during her son Avery’s first two years. Groneberg offers a wealth of insight, information, and even practical resources for families whose children have Down syndrome. Yet this book is first and foremost a story about the constant discovery of love, and it will resonate with every reader who has traveled the always unpredictable, often overwhelming, wonder-filled journey into parenthood.”
—Kim Edwards, author of The Memory Keeper’s Daughter

“I have been ‘to Holland’ for eighteen years now, and this book brought back so many thoughts and feelings I had saved up that I felt an immediate sisterhood with Jennifer. I watched her deal with that same fear of the unknown that singed my heart, and I wept when she reached that crucial moment when she found that same place of self-forgiveness. No matter who or where you are in relation to a child with Down syndrome, these pages will be like signposts along your road, to give hope and a new way of seeing things. It’s good to be able to see the potholes coming and be ready for them, and it’s good to know when to pull over and take the time to enjoy the breathtaking views that only happen on this road. Thank goodness for road maps!”
—Martha Sears, coauthor, The Baby Book: Everything You Need to Know About Your Baby From Birth to Age Two and author, 25 Things Every New Mother Should Know

“What a remarkable book! With excruciating candor and exquisite generosity, Jennifer Graf Groneberg invites us into the deepest privacy of her innermost thoughts, feelings, fears, challenges and triumphs. Nothing is left out in this amazingly intimate and profound journal. She allows us into every nook and cranny of her life and we find ourselves firmly ensconced in her heart.”
—Emily Perl Kingsley, national spokesperson and advocate for people with disabilities and author of "Welcome to Holland"

“This is the story of Avery—a child with Down syndrome who transformed his mother’s broken heart into one filled with cheer, awe, and pride. He offers all new and expectant parents a powerful perspective on life’s greatest lessons.”
—Brian Skotko, M.D., M.P.P., Children’s Hospital Boston & Boston Medical Center.

“Bursting with hope, Groneberg’s account of mothering Avery highlights the triumph of love over fear. Its candid, vivid prose and poignant emotion make the story is difficult to put down and impossible to forget. Herein lies truth to be pondered and savored by every mother, every woman, every human being.”
—Kathryn Lynard Soper, editor of Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives --This text refers to an out of print or unavailable edition of this title.

See all Editorial Reviews

Product Details

• Paperback: 292 pages
• Publisher: NAL Trade; 1 edition (April 1, 2008)
• Language: English
• ISBN-10: 0451222954
• ISBN-13: 978-0451222954
• Product Dimensions: 8.3 x 5.5 x 0.6 inches
• Shipping Weight: 8.8 ounces (View shipping rates and policies)
• Average Customer Review: 4.6 out of 5 stars  See all reviews (33 customer reviews)
• Amazon Best Sellers Rank: #80,882 in Books (See Top 100 in Books)
  • #24 in Books > Health, Fitness & Dieting > Diseases & Physical Ailments > Physical Impairments
  • #30 in Books > Travel > Europe > Netherlands > General

More About the Author

I have a website at jennifergrafgroneberg.com and a blog, Pinwheels (http://jennifergrafgroneberg.wordpress.com)

You can reach me by email at jennifer (at) jennifergrafgroneberg (dot) com.

Most Helpful Customer Reviews

18 of 19 people found the following review helpful

5.0 out of 5 stars An incredible journey...don't get left behind! April 5, 2008

By S. B. Smith

Format:Paperback

It is almost impossible to give fitting praise for this superb book by Jennifer Graf Groneberg. I don't know where to start. Groneberg has been blessed with the rarest of gifts as a writer: She is a brilliant wordsmith, an accomplishment in and of itself; yet she is also so beautifully human in her story telling. She is strong, vulnerable, scared, hopeful, flawed, honest, loving, doubtful, humble, and confident. She is all of us. We are with her in the NICU, as she receives the news that her middle son has been diagnosed with Down syndrome, at home with her as she adjusts to her new future, in the lake with her as she imagines that "nothing good" will come her way again (she of course proves herself gloriously wrong), at Avery's physical therapy appointments where her heart breaks and rejoices at the same time as she observes how extra hard her toddler son must work for the smallest of victories. She is not above sharing with us that among some of the unwelcome comments and feelings offered by strangers about her son are also some of her own. She exposes herself so honestly; the lows as eloquently described as the highs. Her style is spare but not simple, without an ounce of pretension or preachiness. You will finish the story with joy and hope in your heart, and a deep sense of admiration and love for this family who, at the end of the day, isn't so different from yours or mine.

Don't pass up this ticket. Groneberg has invited us along for this extraordinary part of her journey, and I can only hope that there will be many more stops in the future where we can climb aboard and join her.

10 of 10 people found the following review helpful

5.0 out of 5 stars Beautifully written; an honest look into an extraordinary experience June 7, 2008

By A. Jupin

Format:Paperback

I received this book yesterday afternoon and finished it today. What can I say--I was completely and utterly entranced by the honesty and realness of what I read. Having a child with DS too, I could feel her pain, feel her raw emotion, feel her fear. But as I turned each page, I felt myself being forgiven along with her, and it's been a long time since I've felt so much relief and joy. Thank you Jennifer for sharing your story and your experiences with Avery. May you someday know how much grace and dignity you've brought to my own outlook on my future with my son. God bless you and your wonderful family.

9 of 9 people found the following review helpful

5.0 out of 5 stars Stunning April 21, 2008

By Pasadena Books

Format:Paperback

If you are an expectant mother of a child diagnosed with Down syndrome, or the new mother of a newly diagnosed child, or a friend or a family member, get your hands on a copy of this book. You will find no better guide to your journey than Groneberg, who is a gifted writer: honest, loving, self-aware and simply the finest company a reader could ask for.

7 of 7 people found the following review helpful

5.0 out of 5 stars A joyous story about what really matters...or ought to. June 18, 2008

By Karen L. Carter

Format:Paperback

In ROAD MAP TO HOLLAND Jennifer Graf Groneberg reveals a lifetime of lessons learned in a very short time-span. Her message of hope resonates with the joy of her ultimate discovery that one of the greatest gifts she can give her children is to simply teach them how to love. Read this book, read Jennifer's blog, and join in a celebration of a unique family with a mom-writer at the helm who's gracious and generous enough to invite us all along on her ongoing journey of discovery.

7 of 7 people found the following review helpful

5.0 out of 5 stars Must Have for New Parents June 7, 2008

By KaileysMom

Format:Paperback

This is the book that all new parents (or those with a prenatal diagnosis) should be given. So many texts are full of scary facts and overwhelming information. Road Map to Holland is an honest and heartwarming look at the roller coaster of emotions that come with being a new parent to a child with Down Syndrome. It's a wonderful story of falling in love with your child and seeing past a diagnosis.

7 of 7 people found the following review helpful

5.0 out of 5 stars Stellar! April 5, 2008

By Mamalovesbooks

Format:Paperback

This book was just stunning! Jennifer has a way of infusing the reader into her life. I felt like I was there, experiencing it with her. She lays it all bare, herself, her perceived faults and how she dealt with the premature birth of her twins and Down syndrome diagnosis of Avery. What comes across is a very spiritually put together person, a woman who truly knows what matters most at the end of the day.

This book is a gift to the world.

6 of 6 people found the following review helpful

5.0 out of 5 stars A Must Read for Moms June 15, 2008

By Jennifer Donovan

Format:Paperback

I couldn't put this book down.

The author writes about her experience with premature delivery of twins, one of whom is diagnosed with Down syndrome, and the first two years of their life.

This isn't just a story of a mom having to come to terms with that trip to Holland, but an honest mom's story--of balancing the arrival of twins with her preschooler, the affect that her situation had on friendships--both good and bad, her marriage, and her perception of herself as a woman.

This is an excellent book--honest without being morose, uplifting without coming across as saccharine-sweet. A must read for all moms.

6 of 6 people found the following review helpful

5.0 out of 5 stars Read this book! June 7, 2008

By Gillian E. Marchenko

Format:Paperback

This book is a must read for new parents of a child with Down syndrome. Oh, how I wish I had a book like this after I found out my third daughter had Down syndrome. And now it is here, and it is fabulous!

The writting is stunning and yet so personal that by the end of the book you'll want to stop by the author's house for coffee.

This book is honest and true. Please read it and share it with anyone who has ever been touched by the world of special needs.