by Jeanne McDermott
There are so many things I could say about this book. I read it soon after we started the initial steps to learn more about Luka before we committed to adopting him. And I wish I had read it during my first pregnancy (which resulted in a miscarriage). Pregnancy was always such a time of worry for me--what could go wrong with my baby, how could he/she be "different" and how could I handle that?
The first and most important thing I can say about this book is that every parent should read it--preferably before their child is born or adopted but in any event anytime they first hear of it. The author is a scientist. Her pregnancy was normal. All prenatal tests were normal. Her son was born with Apert Syndrome. Apert Syndrome is a syndrome that is manifested with severe craniofacial and hand differences. And she learns that there is nothing "wrong" with her son.
What is so beautiful is the way she comes to understand the world through the way she sees the world "seeing" her son. She learns to not resent the stares or comments. She learns that scientifically and neurologically the human brain naturally must take a moment to understand what it is seeing (ie., resulting in the "stare"). In the moment that the stranger stares at her son and then looks to her, his mother, the brain has processed his "strange" or "different" appearance to that of "oh, he's just a boy". And it is her response to the stranger that BOTH the stranger AND her son will look to for an understanding of his place in the world.
A defensive, hostile response will tell him and the stranger, "There is something about me that must be defended. I am different, I am a victim. The world pities me because I am 'less than.'" A nonchalant, matter of fact, "Isn't he cute?" or, in response to a question about why he looks like he does, a nonchalant, "He was born this way. He has Apert Syndrome," will tell him, "There is nothing wrong with me; my mother knows that no one would think anything other than 'What a great little boy.'"
Here is the quintessential premise of the book: in the locker room of a gym, a boy asks his mother, "Why does that boy have a big head?" The mother simply, matter of factly, and, to the surprise of the author, states, "He has hydrocephalus. Like your cousin." The boy nodds, satisfied and walks off. At first the author is enraged over the child's comments and his mother's erroneous response. But the conclusion she comes to is so poignant and the rage dissipates as she reaches it:
Slowly, the realization dawned that the words themselves had little to do with the ease, comfort, and acceptance
that the first locker room mom communicated. Whatever got said would never be as powerful as the way that
it was said. The secret to handling the inevitable fear and fascinationof outsiders lay in the subtler cues--the
ones that Clever Hans [a dog referred to earlier in the book that seemed to "read minds"] read so well, the ones
that can be summoned but not faked--body language, tone of voice, a positive attitude.
And the more open she is to the stares and comments of people--on the bus, in the park, at the store, etc., the more she realizes that just because people stare doesn't mean they are thinking negative thoughts. Sometimes, they have a child with "special needs" and would love another mother to talk to, or they just want to make faces at her son just as they would another "normal" child, or they are just curious with no judgment.
What I love about Ms. McDermott is that she says: "when strangers hesitated with Nathaniel, I became more gregarious and outgoing, deflecting awkwardness by extending delight in my baby. 'He's cute, isn't he?" I said gently to the tired young woman on the bus who was stealing looks at the Nathaniel. It was my way of acknowledging that her stare was natural but also a cue." And the woman eventually responds, "Why, you are a little cutie, aren't you?"
It's really all in this optimistic statement, "The world could be an ugly place but I took initiative and crossed that chasm with unbridled optimism that it didn't have to be. Life was too short to nurse animosity or register blame."
AND, "I was calm because people learn." What is more profound than that? If we can all cut everyone who says something insensitive a little slack so we can really see what their intent is before we lash out, we might be able to teach OR we might find that people are not intending to hurt with what they say.
More on this book later. Just wanted to share. I think if I read it the first time I was pregnant, I would have been a much calmer pregnant lady. I would not have been as super paranoid. I would not have been counting down the days to each prenatal test and result. I would have truly understood that any child I had, I would be able to totally love, care for and parent. Even though I understood that when I had my children, and adopted my children, I had never really placed myself in the footsteps of a mother of a child who had "differences" of any kind. I would have been more at peace.
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