grateful

I’ve been feeling so stretched lately—juggling the two girls and work and life. D has been working long days, and sometimes I feel like screaming. (I did, in fact, scream in the car the other day when Zoë was wailing and Stella was whining. I just screamed, and I scared the sh*t out of Stella with my outburst. A really proud moment for me.)

Luckily, we got away to my mom’s cabin last weekend—all four of us! I spent months there every summer as a child, and it’s still one of my favorite places. Stella loves it as much as I do, and she was so excited. She chattered the WHOLE WAY (4 hours) up there, asking, “Are we there yet? How much farther? When are we going to get there?”

I went running a couple of times, read a little and napped. Monday morning was gorgeous. D and I sat on the dock drinking coffee as Stella threw pieces of bread into the lake for the sunfish. (Zoë was up at the cabin being bounced by grandma.) It was breezy, and I just lay on my back, listening to the rustling of the Aspen trees, their leaves waving in the blue blue sky like a thousand tiny hands.

Then D and Stella and I went for a canoe ride and saw two bald eagles perched in an oak tree. One flew off as we approached, but the other sat there, head tilted to the side, watching us paddle around the point. A bald eagle never fails to make me draw breath. I can’t get over the fact there were so few of them—I never saw even one in Minnesota as I was growing up—and now I can canoe 100 feet away from one.

I didn’t have a chance to pick up any of the wonderful novels you suggested, so I took up a book that has long been on my shelf: Before and After Zachariah by Fern Kupfer. It is a memoir about what happens to Kupfer and her family when her son, Zachariah, is born severely brain-damaged. It’s heartbreaking. But that doesn’t even begin to describe it. As I read, there was a jabbing pain in my chest, and I felt, quite literally, as if my heart were breaking.

As you know from the books I discuss here, I love honesty. I have so much respect for a writer who writes the hard truth, even when this truth may cast her in a less than flattering light. Kupfer is not afraid to put it all out there—the anger, the sadness, the way that Zachariah’s condition wreaked havoc on her family. She’s not afraid of writing anything (or so it seems), and for this, I respect her tremendously.

At two years, four months, Zachariah is institutionalized. He cannot walk or stand or sit or talk. He cannot hold up his head. His developmental abilities are that of an infant. He cries constantly, only ceases when he is being held and rocked. Kupfer and her husband pass him back and forth, becoming more and more distant and angry with each other. For years they don’t get answers from the medical community to their long list of scary questions.

She writes: “There is a part of me that unequivocally rejects Zach, rejects who and what he is, as part that turns from him, even as I hold him in my arms, delighted to feel his breath against my neck, to kiss his face.”

She writes: “I’m not sure anything we’ve done for Zach has really helped him—I know it hasn’t in any significant way. What has helped me more than anything else has been talking to other women who have handicapped children, a cruel common denominator that cuts across the divisions of economics, of education, of social class.”

She writes: “Often I’m angry at strangers. Dull, sloppy women in supermarkets blithely wheeling their normal kids. Sometimes any woman with normal kids seems to me carelessly unaware of her good fortune. Last summer in Virginia I was sitting with Jan, Eddie and Zach in their strollers, waiting to go into the therapy room. Across the room a woman was chasing a toddler who looked teasingly over his shoulder as he ran, shrieking with delight. But she meant business. When she caught him, she smacked his behind several times until his giggles turned to tears. “Stay put,” she commended, putting him down in a chair, “and don’t move. Don’t you ever move.” Jan and I sat looking at our children. Jan turned to me with clenched teeth: “I feel like shaking her,” she said.”

This book once again confirms for me the need to respect people’s lived experiences. There are those who judged the Kupfers for institutionalizing Zach. But how can anyone judge her, them, when they didn’t live their lives, didn’t survive the day-to-day with Zach and his many needs?

Some of the most heartbreaking parts of the book for me were the scenes with Zach’s older sister, Gabi. How faithfully she loved him, how graceful she was, at age five, when all of the attention was focused on Zach. At one point she says to her mother, “I’m just feeling very hostile toward Zach…I think he gets entirely too much attention around here. He’s all you ever talk about. Sometimes I just feeling like yelling, ‘You dumb baby, you stupid-liar-dumb baby.’”

Kupfer agrees to let Gabi yell that to him the next morning, but the next morning, when Zach wakes crying, Gabi calls her mother instead: “He needs you.” When Kupfer asks Gabi if she wants to yell at him, she says, “’No, I don’t feel like it anymore.” Then thoughtfully, ‘Maybe just telling you was enough.’”

This book was first published in 1982, and reprinted in 1988 and 1998, so the language she uses to describe her son’s condition is not the language most people in the special needs community would use today, but I hope no one will hold this against her.

Near the end of the book, Fern Kupfer addresses her readers: “Those of you who are reading this and have normal children, those whiney miracles, fall to your knees by their bedsides; let gratitude burn forever in your breast, an eternal pilot light.”

I promise, Fern, to be grateful. I promise not to scream in the car anymore. I promise to think of Zach each time I begin to complain about my hectic life with two healthy kids.