What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Tuesday, October 16, 2012

31 for 21: Road Map to Holland (a book review)

This book came recommended by women on the Babycenter Down Syndrome board.  Every so often, someone will ask for reading suggestions, and this is one of the books that is regularly mentioned.

Jennifer Graf Groneberg is a mom of three boys.  Her youngest two are twins, and one of them has Down syndrome.  She writes about the babies’ birth, Avery’s diagnosis, and the next two years of life. 

The book title references an essay written by Emily Perl Kingsley.  She’s a mom of a child with Down syndrome, and she wrote that having a child with special needs is like ending up in Holland instead of Italy (where you planned to be). 

Overall, I enjoyed this book.  I appreciated Groneberg's attention to detail.  She captured moments that resonated with me – from how different relatives and friends received the diagnosis, to meeting another older child with Down syndrome, to starting Early Intervention (therapy and other services), to her growing sensitivity to others around her using the “r” word.  She’s very honest about her feelings in each situation – she openly recounts moments of comfort, shock, fear, delight and even numb avoidance. 

It’s helpful to know that other people have those same feelings and experiences.  I have those moments burned in my mind – when the doctor(s) first talked to us about Down syndrome, when I met another mom of a child with Down syndrome for the first time, when a friend casually used the word “retarded” in a sentence and it stung.  Road Map to Holland plainly says how another woman and family walked through those moments.  I think if I had read it any sooner, I would have cried a lot.  Probably in a good way.

If you are looking for a book that is all happy-happy, this is not it.  This book is honest.  There’s a lot of joy and acceptance, but there’s also some pain and sadness.  It’s all about the journey.


  1. Deborah, I have to say that I love all of these posts this month! Your love for little Ben just oozes out of your heart and into your writing.

    1. Thanks for reading, Kindra! I'm so proud of myself that I've made it halfway through October! (Although I am kind of running out of things to say ... hard to believe, right?)

    2. I had one thought today -- can you write about the older two and what they know/understand about Down Syndrome and how their brother is different or how you guys have talked to them about it?

    3. Sure! That's an interesting question - I actually just ordered a children's book yesterday that explains a few things. Hmmm ... I'll try to write about it this weekend - and maybe post on Monday.