Wednesday, November 4, 2009

Will He Know Me?

Last week I reviewed Kathryn Soper's memoir, The Year My Son and I Were Born. It is one of the most touching, exquisitely written memoirs I have ever read. You can read my review here.

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The book is about Soper's first year as the mother of a child with Down syndrome. Thomas is Kathryn and Reed Soper's seventh child. With six other children to take care of, a household to run, and a marriage to keep intact, Soper tells her story of learning to meet Thomas' changing needs. It is a story of letting go. Of shedding an old life and an old self. It begins the moment her son "shows up with an extra chromosome."

Within this evolution of soul, Soper candidly explains her fears and prejudices, her battle with depression, and the beautiful way she and her family completely embrace Thomas.

This is a book for every mother with a child who has any kind of special need. It shouts out to those who might feel alone. Soper's deep honesty will connect with any parent struggling to meet the needs of their children.

I also see it as a necessary read for the rest of us who interact with individuals like Thomas. Soper gracefully restructures how we view people with Down syndrome. Her perspective is one we could all use. I see life differently after reading her book. It is tenderly written and profoundly moving.

If you've been following my blog, you know I love Kathryn's work. She is a stunning writer. Gentle in her humor. Real. Accessible. Transforming. She is the editor in chief of Segullah.

A HUGE thanks to Kathryn for bravely sharing her personal story. Below is an excerpt to give you a feel for her book and style of writing. View a YouTube clip about the book or purchase her book on Amazon.

And post a comment if you've already read Soper's book!

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Winter

“We’re just about done,” [Melody] said (a therapist form the school for the deaf). “Is there anything else you’d like to work on with Thomas this year?”

Thomas fidgeted on his eye-stimulating quilt. The night before, for the first time, I’d taken him on my bedtime rounds. Ben was curled up under his fuzzy blue blanket, waiting for me. I perched on the edge of his bed and laid Thomas across his chest.

“Hi, Thomas,” he crooned, rubbing his brother’s back. We sat in the near-dark, the three of us, silent. Thomas’ little head bobbed as he studied Ben’s hairline. His eyes shone in the faint light coming through the window.

After a few minutes, Ben let out a big sigh of sleepy pleasure. “I’m just so glad he’s here.” Another big sigh. “I mean, he has a condition, but who cares?”

Good question. Sitting on the floor with Suzanne and Melody (therapists), I was tempted to ask them the same thing. Why did we have to focus on changing Thomas? Why did it matter when he reached his milestones? I didn’t want to care about when he rolled over, or drank from a cup, or waved his hand...I just wanted to love him - without hesitation, without condition. And I wanted him to love me back.

I wondered if he would. I wondered if he could love me the way I wanted to love him - as a distinct, unique, irreplaceable individual. But according to the stereotypes, kids with Down syndrome love everyone. That seemed to water down the significance of any given relationship. Would Thomas distinguish me as his mother, or would my face just be one of many in his warm little world?

“There is one thing,” I said.

Suzanne and Melody smiled their encouragement.

“I want Thomas to know me. I want him to know I’m his mom.”

Both women were quiet. I couldn’t read their faces.

“Will he know me?” I asked after a moment, feeling like a fool.

Suzanne smiled, her eyes tender. “Oh yes,” she said. “Yes, he will definitely know you.”

I nodded, worried that if I spoke I’d start crying.

“It’s a wonderful goal. We’ll put it under ‘social skills,’” Suzanne said, writing it down...They stood to leave, handing me copies of the goal sheets - ten pages of them. “We’ll see you next time,” they chorused...I tried to smile back as I saw them out the door, and into the endless winter (151-152).

5 comments:

  1. i know i need to read this. thanks for the glimpse and encouragement. xox

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  2. Is this our book this month? It should be.

    Love your blog. You inspire me to be better, to try harder. And your kids are adorable.

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  3. Melissa - I have two copies. It's a great read. Let's ask the gals. And when do I get to host again? I've been out of the loop for so long!

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  4. I would love to read this book. I cannot completely empathize, by any means, but I sure know about those 'goal-setting' meetings with the therapists.

    They always ask me what I want to work on, and I try not to let on that I never know what I want to work on, because Becks is his own little entity in my eyes and I can't see him for his missing milestones.

    At times, all I can think is I want to set a goal that he'll have a "happy life", but I'm sure that's not what his preschool teachers mean by setting goals.

    Then they make their suggestions, which include words like "Goal that Beckham will attend in larger groups, with the appropriate eye-contact, for 50% of the time, and that he will point to body parts," and I say, "Oh yeah. That's a good one. Why didn't I think of that? Let's include that one in the goals."

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  5. Brod - "I can't see him for his missing milestones" - I love that. You're such a great Mom. Thanks for your insightful perspective. A few pages after the excerpt I cited, Soper uses your exact words - she just wants Thomas to have a "happy life." Can't that be her goal? Honestly. That's what you really want. How can they expect you to know such specifics as pointing to body parts? Wow. I think you would love Soper's book. Next time I see you I'll get it to you.

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