___________GIFTS _________________ ROAD MAP TO HOLLAND
_______________________________ Montana wife and mother life-changing story

And it came to pass that I, Nephi, said unto my father: I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them.

From Emily Perl Kingsley:
"I am often asked to describe the experience of raising a child with a disability [such as Down syndrome] - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

"It's like this . . .

"When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

"After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

"But there's been a change in the flight plan. They've landed in Holland and there you must stay.

"The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

"So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

"It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

"But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

"And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

"But . . . if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland".


___ROAD MAP TO HOLLAND
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.

“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


__________GIFTS

GIFTS is a poignant and inspirational collection of stories written by mothers of children with Down syndrome. These mothers, each with a unique story, graciously and honestly offer us a glimpse of their journey. Some describe the raw anguish felt upon learning that their child had Down syndrome, their sense of loss and even despair. Many speak of the fierce protection they provide their child in terms of advocacy and education of others, and how they, as mothers, have grown strong and assertive in providing for their children's needs. All talk of unyielding love and admiration for their children and the joy the children have brought to their lives.

Written to help others who are experiencing similar circumstances, Gifts explores relationships between a parent and child, with siblings and with the larger community. It tells of the 'light burning brightly' and 'the tiny hands of comfort' offered by the child with Down syndrome. It shares stories of families who are reveling in the journey that they had once feared.

This book will accompany the reader long after it is placed on the bookshelf. The advice and resources provided will help many, and the theme of determination will inspire all to cheer for those with Down's, as well as their families. A companion volume is in the works offering more stories of love, acceptance and hope.

"I thoroughly enjoyed this paperback book. Not often can a book touch one s heart--I found, more than once, a tear in my eye and a smile on my lips. It is a testament to what can be accomplished with love, patience and determination and will be an invaluable resource for anyone associated with the care of individuals with Down syndrome. --ADVANCE for Occupational Therapy Practitioners

"This fine book helps dispel the fear and misinformation about Down syndrome that many parents and prospective parents face. As these deft essays convey, the world would be a sweeter place with more Down syndrome citizens, not fewer. -- George F. Will

Having a baby with Down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way. In this candid and poignant collection of personal stories, sixty-three mothers describe the gifts of respect, strength, delight, perspective, and love, which their child with Down syndrome has brought into their lives. The contributors to this collection have diverse personalities and perspectives, and draw from a wide spectrum of ethnicity, world views, and religious beliefs. Some are parenting within a traditional family structure; some are not. Some never considered terminating their pregnancy; some struggled with the decision. Some were calm at the time of diagnosis; some were traumatized. Some write about their pregnancy and the months after giving birth; some reflect on years of experience with their child. Their diverse experiences point to a common truth: The life of a child with Down syndrome is something to celebrate. These women have something to say--not just to other mothers but to all of us.