Each and every family raising a child with Down syndrome has a unique story to tell –of how they learned the diagnosis, how they handled the news, the reaction of family and friends, the sorrows and the joys involved in raising their child.
“Road Map to Holland: How I found my way through my son's first two years with Down Syndrome,” by Jennifer Graf Groneberg, is one such tale. This book is unflinchingly honest. At times it made me feel as if I was reading someone’s private diary and that I should put it down, that I should look away. I couldn’t. The book’s title comes from a piece written by Emily Perl Kingsley – “Welcome to Holland,” something that many families who are raising a child with Down Syndrome are introduced at one point or another.
Groneberg is a great writer – there’s no mistaking that. The emotional rollercoaster of her experience -- giving birth to premature twins and then learning 5-days later that the oldest, Avery, has Down Syndrome-- pulls you in and keeps you turning the pages.
I’ve often told people that when we learned through prenatal testing that Nikki would have Down syndrome that coming to terms with it and accepting it was very similar to going through the stages of grief. And that you can’t compare how my family handled the news to how another family handled it.
But I found myself drawing comparisons – and my reaction was no Disney moment of running through a meadow with birds chirping as they fluttered around my head. Nope, I sobbed uncontrollably at that doctor’s appointment and several others that followed.
I found myself at times wanting to shout at Groneberg and tell her that the diagnosis isn’t about her, it is about her son. I wanted to shout that she needed to end the pity party and start taking positive, pro-active steps. I’m still having trouble wrapping my head around fact that Groneberg didn’t call her state’s early intervention program shortly after her babies were released from the NICU, but waited until they were 10-months old. To me, that delay meant precious months were lost.
Groneberg does use the book to shine a light on some of the harder topics associated with raising a child with Down syndrome, including the varied reactions of family and friends to the news that your child has Down syndrome; and even the loss of a friend because of your child’s diagnosis. And like many other books on the subject, she doesn’t avoid talking about prenatal testing and the fact that 90 percent of women who learn that their child will have Down syndrome choose to end their pregnancy. She rails against those numbers, and even finds herself unsure of her opinions on abortion – which prior to having Avery was solidly prochoice.
Groneberg deserves accolades for her resources at the back of the book. The list covers everything from books for children to great resources for families, teachers or just those who want to learn more.
If it wasn’t for the fact that I was writing a review for the Mother-talk blog tour, I’m not sure I would have finished reading the book. I had trouble relating to Groneberg’s constant sense of melancholy and her long struggle to accept her son for who he is and not what she wants him to be.
Other readers, who are raising a child with Down syndrome, or a child with any special needs, might have a very different reaction to the book. Every family’s story is different, but it’s not always easy to relate to each other’s tales.