By Jennifer Graf Groneberg
Those of us who give birth to children with Down syndrome have been likened to travelers to Italy who find that their plane unexpectedly lands in Holland. The title “Roadmap to Holland” is a reference to that famous essay by Emily Perl Kingsley, who worked for decades writing for Sesame Street and whose son Jason has Down syndrome.
She has for generations provided this invaluable wisdom for new parents of children with Down syndrome. In “Roadmap to Holland” we meet Jennifer, a new and compassionate companion on our journey raising a child who is both very different, and yet surprisingly similar to our other children.
Jennifer and her husband Tom had the perfect life; both writers, they lived on a peninsula on a lake in Montana; they worked in their home office down the hill from their home, surrounded by peace and tranquility of nature. Their life was enlivened by the joy of a young son, Carter. Just what inspired them to test fate by conceiving again? This question kept returning to Jennifer’s mind as the difficulties in her journey to Holland began to reveal themselves. Twin boys, Bennett and Avery and were born seven weeks premature with the daunting possibility of lifelong repercussions. Just when Jennifer thought the news couldn’t get worse, she was informed that Avery, her little blue-eyed boy with a full head of blond hair, had Trisomy 21, an extra 21st chromosome. Jennifer’s first reaction, like so many, was an urge to flee, leaving all the fears behind. She, however being the valiant woman she is, stayed the course, and, for months commuted to the hospital, pumping her milk round the clock, holding her babies by turns, caring for her older son, longing for a full night’s sleep, until, finally, her little boys came home, one by one to the little house by the lake.
Jennifer’s story is a vivid, day by day journal of some of the most devoted mothering in modern literature, tempered by her honest descriptions of her personal growth in acceptance of Avery’s diagnosis. Her vivid descriptions of each scene, draws us into her life’s journey so deeply that we are reluctant to see the book end. “Roadmap” evoked so many of my own fond and painful memories as the mother of a daughter with Trisomy 21, that I feel as if I could easily spend a quiet winter afternoon at the little house by the lake chatting with her by the fireplace, sipping tea as our children play at our feet.
Still searching for the spiritual underpinnings of life, Jennifer is not afraid to admit that she has not found all of life’s answers, yet she is powerfully articulate describing the beauty of what she has found; that life with three little boys, one of whom has an extra chromosome, is a blessing she never would have anticipated. She has been enriched by her experience in ways which, until this book came out, many other mothers could not appreciate: she cites the tragic statistic that 90% of expectant mothers whose unborn child is diagnosed with Down syndrome choose to end it’s life. Books like “Roadmap to Holland” provide support to mothers facing the daunting prospect of raising a special needs child; they know that they are not alone. They can pick up this volume; and enter into Jennifer’s world of challenges, tears, and triumphs, where, through sleep-hooded eyes; a grateful mother can still see the sun shine.
I recommend this book for mothers who are facing challenges, and seek companionship on their journey. Jennifer has an extraordinarily detailed description of the therapies available for our children, coupled with a complete appendix with resources for parents of children with Down syndrome. I hope that “Roadmap to Holland” joins “Gifts” on the bookshelves of obstetricians and genetic counselors who want to give their patients a realistic yet inspiring idea of what it’s really like to raise a child with Trisomy 21 in today’s world.
Order the book here.
Read Jennifer's blog Pinwheels.