Book Review: Road Map to Holland

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. 

Baxter.

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.

Advertisements

28 responses to “Book Review: Road Map to Holland

  1. Pingback: Book Reviews

  2. That was a truly beautiful post. So much food for thought. I am not a mother of children with special needs, but I treasure gaining an increased awareness and understanding of the parenting experience of others. Through my work (PACU nurse) I come across women who have given birth to children with special needs, even if it is not very often. A lack of insight makes me worry about what to say and the last thing I want to do is to offer up platitudes when what I really want to do is to offer support and a measure of reassurance.

  3. Jordan, I think you touched on the most important point here–this book is for EVERY parent, regardless of their child’s needs. So much of the dialogue we need to be having is about differences and acceptance and supporting one another and all our beautiful children, no matter what. Books like this one go a long way toward giving us the opportunity to “walk a mile in someone else’s shoes” and that’s the place where the dialogue can begin.

    Thanks for a great post.

  4. Mari, I’ll be happy to add you to the drawing for the book. Kristen, I believe you have a copy already, yes?

  5. Jordan, this is beautiful. I, too, found so much “universality” in Jennifer’s words. (I have a copy so don’t enter my name, please.)

    I also appreciate the inshgts and word of understanding you share about what you observe in parents of our special kids. Sometimes it’s hard to know what “the rest of the world” sees when they look at us. It’s nice to know that some people DO realize that you just find ways to do what you need to do.

  6. Gosh, it’s seven a.m. and I’m crying already! Good grief!

    But how not to have tears, after reading this stunning and eloquent commentary? Jordan, you GET it. You really really do. I think any time a person gathers their words together and sends them out into the world, they’re looking for a connection. A person who says, Ah, yes! I see! Thank you for being that connection.

    (On a different note, I thought you might “bust” me for my ignorance about communication! 🙂 But I hope if new parents read my book, they can jump through my ignorance, learn what I learned, and move on much more quickly than I did! And now, I find the work you do fascinating, btw…)

  7. Jordan, I love reading your posts as I tend to learn something new everytime. I’m struggling with how to respond to this one…so I’ll just say thank you for keeping me aware.

  8. Pingback: Letting Go « Pinwheels

  9. Jordan – I’m one of your lurking readers, a friend of Elise’s in MN. I truly enjoy reading The Wonderwheel but wanted to comment this time because I especially loved this post – really well written and well put (lest you think I’m only in it for the swag!). I’ve just sent off a link to your post to someone who’s recently been in the same position of making those difficult prenatal decisions and I thought your perspective was spot on. Thank you for sharing it.

  10. Oh Jordan, this was absolutely wonderful! I did find out the gender of my children, as I am not much for surprises, but I didn’t do a lot of the testing b/c, as my OB said, it is only worth it if you are going to DO something with the information. I worried. But. I’ve learned that I am a lot stronger than I thought. My son taught me that and I am forever grateful.

    I don’t have the book yet and can’t wait to read it, so please put me in the drawing!

  11. You are a wonderful person..what else can I say?

  12. J, as you might guess knowing us as you do, Anna and I did no testing. Heck, she didn’t even get an ultrasound.

    We asked ourselves pretty much the same question that you guys did. “What are we or anyone else going to do with the information gleaned from any of these tests?” The answer we determined was not much.

    Thanks for your post.

  13. Jordan, I want to buy my own copy of this book, you know, support Jennifer in that little way, so you don’t have to put my name in the hat. But I did want to comment Amen, Sister, Amen, as I read your post. Thanks so much for writing.

  14. Good post. I’m on some middle road with this. I always wanted to know what was going on in utero, not so I could abort or because I really wanted one sex or the other, but because…I’m the kind of person who looks up movie spoilers just so I can watch the movie more comfortably. I feel, probably irrationally, that with knowledge comes improved preparedness and less stress. It’s not about not surrendering control, it’s really just about *knowing* and knowing how much less stressed I am when I simply *know.* I gave up on the control thing a long time ago and freak myself out on a daily basis recalling exactly how little control I have over anything.

    With our third child, we had the prenatal testing, including nuchal fold, and everything looked fine, but I’d already decided that I’d have the baby, regardless. The problem was, Mr. DMFP had not necessarily decided that. My decision was not a “we” decision in that regard. It would have been a difficult, long, and painful discussion had we had to make that decision. He would never have even thought of forcing me or even leaning on me to do anything that I didn’t want to do, but his perspective is so very different from mine when it comes to children at all, that these are simply discussions we have to have. Just the decision to try for a third was in itself tense and difficult. His focus was far more on support and fiscal issues and comfort zones during those discussions, while mine had maternal instincts in the driver’s seat.

  15. Wow! What a great post. I was new to the blog world until I started reading yours and have become a true “follower”. I love reading all your posts and always come away with a new way of looking at things. I have never left a comment mainly because I am not a mom and feel kind of like an outsider- peering in someone else’s window. I learn so much every time I read a post but this one really hit home. I found myself all teary eyed and came to a personal realization. I am not a mom- but look forward to being one someday. As you know I work with children with special needs. I have this fear of having a child with challenges , which I never really acknowledge or said out loud. I have had a personal connection watching family members struggle in addition to my profession. I never really voiced this concern because I believe this world is a better place with all the children I work with. I just see how difficult it is and feel a pang of sadness for a child who may have struggles. But as you put it – we never know what struggles we may have and we can never predict the future. I have seen so many children strive and progress and defeat all odds placed against them with the love and support of their family and community. Besides who am I to decide what constitutes a happy fulfilling life. I will go purchase the book and begin to “let go” of that fear. I believe all children are blessings and every child has something unique to offer and teach us.

  16. This was a beautiful post. And of course I would love to be entered in the drawing!

  17. An addition to the drawing that I don’t want to forget:

    The wondrous Sara Peterson from Decorah, IA, whose dial-up internet on the farm does not give her the opportunity to post a comment.

    But she WANTS THE BOOK!

  18. Cathy Hubbard

    We faced something very similar when we went down the adoption path. For starters, we had no medical history of our child apart from what the orphanage provided – much of which, sadly, turned out to be fabricated. (It was only through time and observation that we realized she’ d been born premature.) We knew there were bound to be delays due to her first year in a poverty-stricken institution, and we were as ready as we could be to take on the health and development issues that came with malnutrition, scabies, and other untreated infant illnesses.

    On the other hand, part of the adoption process required us to fill out a list of “wants” and “don’t wants” in terms of medical needs. Are you willing to adopt a blind child? Check yes or no. Hearing impaired? Downs Syndrome? Cleft pallet? Club foot? There was actually a little box in which we had to put a check mark. The list went on for an entire page and we had to look certain conditions up because we’d never even heard of them.

    If anything will force you to confront your own ethics and values as a soon-to-be parent, that will. It was a very strange dance, feeling both in control of the kind of child we wanted to adopt, and at the same time, completely at sea. We finally concluded that there was nothing wrong with us quietly hoping for a healthy, thriving child, as long as we also embraced the idea that we would end up with the child who was meant to be with us, regardless of her medical needs. It was our first big step into grown-up land.

    And add me to the drawing. I never win these things, but I love to be part of the action.

  19. Wow – I sat at my desk and cried as I read this post, both reading your words and the words quoted from the book. Then I went and tried to get the book in the five minutes I had between leaving work and picking up Daniel, and couldn’t find anyone to help me and therefore couldn’t find it in the big University book store in the time I had. But I will find it, I know! Thank you! And I am really looking forward to reading the book.

  20. Cara, feel free to enter the drawing and then if you don’t win it you could go buy it! Just let me know if you want your name in it.

  21. Oh my. What a beautiful post. Truly gorgeous.

    Add my name, but rest assured, chosen or not, I will read this book.

  22. Oh, this is lovely! Thank you.

    Very sad, indeed, about why you aren’t seeing children with DS anymore. About 90 percent of pregnancies diagnosed with DS are terminated.

    I have a 10-year-old daughter with an extra chromosome, and she’s FAR more blessing than burden. I wouldn’t have missed her for anything.

    I think your reminder to “Let go” is important. Many of my most treasured experiences are ones I would have chosen to skip, had I been given the choice.

  23. Jordan, this was such a good post for me to read today. You said it all so beautifully. Count me in for the drawing — but like drama mama, even if I don’t win I’m planning to read the book.

  24. I can’t wait to read Jennifer’s book but there’s no need to put my name in the hat; I’ve got a gift card to B&N that will be put to good use soon. So glad I found your blog via Kristen’s blog…sounds like your get-together in NYC was truly memorable! And I love the photo of you three…! Karen in Denver

  25. Okay so you made me cry too. I cannot wait to read this book. In fact, I have a gift card burning a hole in my wallet.
    Jen is right. You GET it. That’s what makes you who you are, and so special.

  26. Count me in Jordan – your post was beautiful and was something I needed to hear today! Thank you so much!!

  27. Am I too late to enter? Last year a close friend of mine decided to terminate her pregnancy after they got a positive confirmation of DS. I’m still in shock and deeply saddened by her choice, yet I still remain her friend and respect her right to chose. But in my own experience working with many children with DS, some of my fondest memories and break-throughs were with them. One of my students, Barry, with whom I worked for 4 years, was one of the most popular students in the school. It was beautiful to see.

    So, yes, I’d like to read the book! Thanks for the thoughtful review.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s