For those of you who are not familiar with this book, Road Map to Holland by Jennifer Graf Groneberg is an excellent book that gives one mother's experience of having a child with Down syndrome. I read the book awhile back, but recently picked it up again to thumb through some sections that I felt drawn to. I would like to share two of them with you.
The first one talks about Emily Perl Kingsley's essay Welcome to Holland (something I shared before). This essay was part of the inspiration for Groneberg's book, although Groneberg wanted more information on what to expect in the experience, hence the title of the book. In addition to writing her essay, Kingsley was a writer for Sesame Street. She became an advocate for people with disabilities after the birth of her son, Jason. This advocacy included having individuals with disabilities on the cast of Sesame Street. If you watched this show when you were a child (or now with some little one you know), you totally can see Kingsley's influence. I am drawn to this quote because of my reflection on my memories from the past involving experiences with individuals with disabilities. This excerpt is from page 220 of Groneberg's book. It follows after Groneberg realizes that a Sesame Street video she has seen many times has a child in it, named Michael, who has Down syndrome. She then does some research on Emily Perl Kingsley. The excerpt is as follows:
"A vivid childhood memory comes to me. I'm four years old. The bright morning sun shines through the windows behind the television. I can see dust motes in the shafts of light; to me, they look like sparkles. The brightness makes the television screen seem dark. I have to concentrate to see the images. I'm so filled with happiness I can barely contain myself; it's my favorite shoe. There's Ernie and Bert, Big Bird and Grover. But the best is the Count. I love to count with the Count.
I've grown up with this show; these images of people all ages and colors and abilities living and working and playing together. It's possible that I simply didn't need to remember that Michael had Down syndrome, until now. My mind, and heart, is used to the idea of acceptance and inclusion. For this, in part, I have Emily Perl Kingsley to thank.
Once again, she's given me hope. I feel a great sense of relief. It's as if my previous indiscretions - not thinking about the mother or the family of the man at the secondhand store; not knowing what to say to the man gathering shopping carts in the grocery store parking lot - now have a counterpoint. At least there's this; I watched a Sesame Street video hundreds of times without focusing on the child with Down syndrome. Before I even knew it mattered, I accepted him without a second thought. If it happened to me, maybe it's happened to other people, too."
I can really relate to Groneberg. I had totally forgotten about the experience of watching Sesame Street and it's impact on my early development until I read Groneberg's account of this for herself. Thanks for including this in your book.
The second passage is on page 237. While at a picnic, Groneberg reflects on how her experience at this event would have differed without her twin sons, one of which has Down syndrome. She would have had just one child then, named Carter, and never would have had this experience with Down syndrome and the clarity it can bring. I think about that a lot too. She also talks about the 90% of individuals who decide to terminate when they receive a prenatal diagnosis of Down syndrome. As a person in the 10% group, I think about this a lot - I did have a choice, and I am so happy that I choose Quinn. I feel honored that Groneberg mentions people like me in her book. The excerpt is as follows:
"For a brief moment, I wonder who I might have been, if Carter was my only child. I probably would be worrying about the food, or my clothes. I'd be thinking small thoughts, little unimportant ones, and I'd miss the big picture. I feel it anew, in every cell of my body: the voices, the laughter. I see it: the beauty of the faces of the children holding sparklers. Fathers and mothers bent over them from behind, supporting them, guiding them. Everyone lustrous and shining.
I think again on the nine-out-of-ten statistic, only this time, I also think about the women who might choose a child like Avery. I see them all around me: these are the women I pin my hopes on. These are mothers of our future, if the future is to include children like Avery."
Down syndrome has added so much to my life. I would never have read Groneberg's book if it wasn't in my life. I would never have had this blog. I would never have learned as much as I have. Once again, I owe all of this to my Quinn.
If you haven't seen the clip below, please do - it is of Groneberg reading another excerpt from her book. Groneberg gives me hope. I really appreciate her book. You can also go to her blog too, called Pinwheels. It is in the blogs that I follow.
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