When I started reading Jennifer Graf Groneberg’s new book Road Map to Holland: How I Found My Way Through My Son’s First Two Years with Down Syndrome, I knew I was in for a treat. I knew this because I love to read Jennifer’s posts at Pinwheels and MotherTalk so much that if she started writing for The National Inquirer, I’d buy it weekly. Her writing is lyrical and her voice is one that I yearn to hear in person while chatting over a cup of chamomile tea, funny little boys running in circles around us.
Jennifer writes with poignant honesty about the life-altering experience of giving birth to twins Avery and Bennett seven weeks prematurely and then learning just a couple of days later that Avery had Down Syndrome. With her 4-year old son Carter already a part of the family, life became extraordinarily complicated and challenging overnight for Jennifer and her husband Tom.
On the plane ride to New York last Wednesday, I was about two-thirds of the way through Road Map to Holland when I suddenly stopped reading, surprised by a memory that had come to me, something I hadn’t thought about for a couple years.
When I was pregnant with Baxter, the doctor had told us that there was a small chance he had Down Syndrome, based on one of the prenatal tests. I remember having a conference call with a genetic counselor, who took our family history on both sides and explained that amniocentesis was an option for me if we would like to rule it out. Matt and I discussed it after the call, but not for long. Our only question was, “Would the baby require additional medical care in utero or at the time of birth if he or she had Down Syndrome?” The answer was “no” and so we opted out of any further testing. We allowed this information to dance around the edges of our consciousness throughout the pregnancy, let our families know of the slim possibility, and waited.
I remember feeling completely sick about it. Not about the possibility that my child might have DS but about the realization that this was why I wasn’t seeing kids with this diagnosis anymore – people were finding out prenatally. That was the first inkling I had that our decision to let nature take its course was unusual.
The rest of the inklings trickled in over the years as I made my way through two pregnancies and fielded the usual questions from friends and acquaintances. Although it didn’t bother me that others did extensive testing and gathered as much information about their unborn children as they could, it made some friends uncomfortable that I wasn’t doing the same. I didn’t want to know the sex of the babies, nor did I want more than the very basic tests. My reason was this: I believe that pregnancy can be the first step in letting go – letting go of the control we like to imagine that we have over our own lives, and preparing to bring a little person into the world who is not actually going to be ours to control. To me it’s a mindset, not one that necessarily comes easily but that I have always felt was important. As a pediatric therapist, I know that babies are born appearing perfectly typical every single day who are later diagnosed with autism or develop seizure disorders or have leukemia or get into a car accident on the way to the prom and suffer a traumatic brain injury and wind up living in a residential school. I have worked with children and teens for whom each one of these things has occurred. So what is prenatal testing, really? Prenatal testing is no guarantee that our children’s lives are going to turn out just fine. It’s little more than false security, to get that “all clear” before the child is born. My intuition was: Let it go.
I am often asked if, knowing what I know, I was afraid to have children in case they were born with special needs. Quite the contrary. What I have learned over years of observation is that parents gradually find the strength to do what needs to be done for their children. I have watched a great many parents go through stunning transformations of attitude and even personality as they learn to look at the world in a different way, find other parents who are traveling on a similar path, gather their support networks around them, and keep moving forward. That is not to say that I would be unafraid of the work, the emotional stress, and the financial strains, but I was not afraid to have a child with special needs, no. I had seen countless other parents do it; I could, too.
The emotions are raw in Jennifer’s beautiful story and it details – often very painfully – that real and extremely difficult experience parents have when they discover that their children and the future of their families are not what they had anticipated. But beyond that, as Jennifer has written so eloquently, finding reasons to celebrate as the much-loved child develops beyond one’s expectations can also bring a joy and pride that would otherwise be unknown.
When I began reading this book I was certain that it would be a must-read for parents with a child diagnosed with Down Syndrome. When I finished it, I was certain it should be read by absolutely anyone who finds themselves in Holland rather than Italy, no matter how they got there, because the transformation we see in Jennifer is so real, loving, and full of hope. In the book, she writes about watching Avery sign baby as she tries to find the words to express what it’s like to be his mother:
“That’s the sign I want to use to tell Sarah what it’s like being Avery’s mom. Big love, big joy. Let go. Hug yourself and swing your body and smile and expect that the world will receive you just as you are, and it will. It will because you make it so, with all your heart and your whole body, smiling, swaying back and forth so fast and pure that the surety of it makes you dizzy.”
I am going to give away a copy of Road Map to Holland. Not my copy, mind you, because that will have a place of honor in the loaning library at my private practice for other parents to borrow. However, in support of this book, I will purchase one more copy and have it shipped directly to the lucky person whose name I draw. Please don’t hesitate to leave your name in the comment section of this post, even if you don’t have a child with special needs. This book is for everyone.
I will ask Baxter, my son who turned out not to have Down Syndrome but constantly teaches me to reevaluate my assumptions about parenthood and the world, to choose one name out of a hat on the 21st of this month, in honor of Avery’s 21st chromosome and all that he has brought to us just by being in the world.