When my son Thomas was diagnosed with Down syndrome shortly after his birth in October 2005, I had to cope with many difficult feelings. My fears gave a dark cast to the future. But as time passed, that darkness lifted and I was able to fully enjoy the beauty of our life together. Looking back, I find it remarkable that such a rich experience is developing out of a situation which seemed so undesirable.
As I have ventured into the extensive community of families touched by Down syndrome, I’ve encountered many others who have discovered a similar dynamic in their lives. Yes, there are challenges that come with the experience, but the tenor of the voices I’ve heard is strongly positive. Given the fear and dread that commonly surround a diagnosis of Down syndrome, it’s clear that these uplifting voices need to be heard by the world—and especially by parents facing this diagnosis for their child.
This conviction, coupled with my interest and background in working with personal writing, inspired me to collect stories which reveal the inscape of parenting a child with Down syndrome. My intent was to create the book I wished I could have read during the difficult months following Thomas’s birth. As president of Segullah Group, a non-profit producer of personal writings, I already had a framework in place to support this endeavor. The next step was to find contributors and a production staff that was passionate about the book’s mission.
The process began in July 2006 with posts on popular Down syndrome-related Internet sites. With the help of R N Phong, calls for submissions were posted on the DS-related online forums, including BabyCenter.com, DownSyn.com, UnoMas, and the T21 Online Community. I invited potential contributors to write about a specific blessing that their child has brought into their lives, and I suggested five broad topics for consideration: respect, strength, delight, perspective, and love.
Early in the process of gathering submissions, I met another mother, Robin Roach, who was already in the process collecting personal stories from the members of the Down syndrome forum at BabyCenter.com. We combined our efforts, and with the help of several others with a deep interest in the project, the news of this opportunity spread quickly on-line. A group of talented, devoted women (who are also book contributors) joined me to form a production staff. In a few short weeks, we had sixty-three wonderful stories in hand from mothers across the nation and in Canada. Each was accepted for publication.
I worked closely with each author to revise and polish the stories. Instrumental to the production of the book were Jennifer Graf Groneberg, who gave editorial assistance; Joel and Carla Reeves, who designed and formatted the book’s interior, Johnna Cornett, who designed the cover, and Rebecca Phong, who formatted the book’s 68 photographs and created our website.
The book was first published through Booksurge in October, 2006. It was marketed online for three weeks before landing a publishing contract with Woodbine House. The new edition includes a foreword by parenting expert Martha Sears and will be released in June, 2007.
All profits from book sales will be dedicated to the Gifts Outreach program. This program is designed to provide complimentary copies of the book to parents facing a new diagnosis of Down syndrome for their child. Work is in progress to create distribution channels for this purpose. Donations to Segullah Group, Inc. are tax-deductible, and all funds donated to support Giftswill be used for our outreach program.
The Gifts publicity team is launching an extensive book promotion effort designed to reach all corners of the nation as well as several locations in Canada. The team includes Carla Reeves, director of the Gifts Outreach program; Rebecca Phong, our webmaster who is also oversees online publicity; and the rest of our PR team: Catherine Finn, Tara Marie Hintz, Renee Mead, Stefanie Miller, and Robin Roach.
Nonprofit organizations with 501(3)(c) status are eligible to purchase copies of Gifts at Woodbine’s wholesale price.
The purpose of Gifts is to show the world that the life of a child with Down syndrome is something to celebrate. I know that the book will touch hearts and change lives, and I am deeply grateful to each person who volunteers time, energy, and funding to support this endeavor.