Handle With Care (13 page)

The best part, though, was that you could go back to preschool. It was a private school, held for two hours each morning in the basement of a church. You were a year older than other kids in the class, but you’d missed so much school because of breaks that we’d decided to repeat the year—you could read at a sixth-grade level, but you needed to be around other kids your age for socialization. You didn’t have many friends—children were either frightened by your wheelchair and walker or, oddly, jealous of the casts that you’d come to school wearing. Now, driving to the church, I glanced into the rearview mirror. “So what are you going to do first?”

“The rice table.” Miss Katie, whom you ranked somewhere just shy of Jesus on the adoration scale, had set up an enormous sandbox full of colored rice grains, which kids could pour into different size containers. You loved the noise it made; you told me it sounded like rain. “And the parachute.”

This was a game where one child ran under a brightly colored round of silk while the rest held on to its edges. “You’re going to have to wait a while for that, Wills,” I said, and I pulled into the parking lot. “One day at a time.”

I unloaded your wheelchair from the back of the van and settled you into it, then pushed you up the ramp that the school had added this past summer, after you’d enrolled. Inside, other students were hanging their coats in their cubbies; moms were rolling up dried finger paintings that were hanging on a clothes rack. “You’re back!” one woman said, smiling down at you. Then she looked up at me. “Kelsey had her birthday party last weekend—she saved a goody bag for Willow. We would have invited her, but, well, it was at the Gymnastics Hut, and I figured she might feel left out.”

As opposed to not being invited? I thought. But instead, I smiled. “That was very thoughtful.”

A little boy touched the edges of your spica cast. “Wow,” he breathed. “How do you pee in that thing?”

“I don’t,” you said, without cracking a smile. “I haven’t gone in four months, Derek, so you’d better watch out ’cause I could blow like a volcano any minute.”

“Willow,” I murmured, “no need to be snarky.”

“He started it…”

Miss Katie came into the hallway as she heard the commotion of our arrival. She did the slightest double take when she saw you in the bivalved cast but quickly recovered. “Willow!” she said, getting down on her knees to your level. “It is so nice to see you!” She summoned her assistant, Miss Sylvia. “Sylvia, can you keep an eye on Willow while her mom and I have a talk?”

I followed her down the hallway past the bathrooms with their impossibly squat toilets to the area that doubled as music room and gymnasium. “Charlotte,” Kate said, “I must have misunderstood. When you called to tell me Willow was coming, I thought she was out of that body cast!”

“Well, she will be. It’s a gradual thing.” I smiled at her. “She’s really excited to be back here.”

“I think you’re rushing things—”

“It’s fine, really. She needs the activity. Even if she breaks again, a break after a few weeks of really great play is better for her body than just sitting around at home. And you don’t have to worry about the other kids hurting her, beyond the usual. We wrestle with her. We tickle her.”

“Yes, but you do all that at home,” the teacher pointed out. “In a school environment…Well, it’s riskier.”

I stepped back, reading her loud and clear: we’re liable when she’s on our grounds. In spite of the Americans with Disabilities Act, I routinely read on online OI forums of private schools who kindly suggested that a healing child be kept at home, ostensibly for the child’s best interests but more likely because of their own rising insurance premiums. It created a catch-22: legally, you had clear grounds to sue for discrimination, but once you did, you could bet that, even if you won your case, your child would be treated differently when she returned.

“Riskier for whom?” I said, my face growing hot. “I paid tuition to
have my daughter here. Kate, you know damn well you can’t tell me she’s not welcome.”

“I’m happy to refund you tuition for the months she’s missed. And I would never tell you that Willow’s not welcome—we love her, and we’ve missed her. We just want to make sure she’s safe.” She shook her head. “Look at it from our point of view. Next year, when Willow’s in kindergarten, she’ll have a full-time aide. We don’t have that resource here.”

“Then I’ll be her aide. I’ll stay with her. Just let her”—my voice snapped like a twig—“let her feel like she’s normal.”

Kate looked up at me. “Do you think being the only child with a parent in the classroom is going to make her feel that way?”

Speechless—fuming—I strode down the hall to where Miss Sylvia was still waiting with you, watching you show off the cast’s Velcro straps. “We have to go,” I said, blinking back tears.

“But I want to play at the rice table…”

“You know what?” Kate said. “Miss Sylvia will get you your own bag to take home! Thanks for coming to say hello to all your friends, Willow.”

Confused, you turned to me. “Mommy? Why can’t I stay?”

“We’ll talk about it later.”

Miss Sylvia returned with a Ziploc full of purple rice grains. “Here you go, pumpkin.”

“Tell me this,” I said, eyeing each of the teachers in turn. “What good is a life if she doesn’t get to live it?”

I pushed you out of the school, still so angry that it took me a moment to realize you were deathly silent. When we reached the van, you had tears in your eyes. “It’s okay, Mom,” you said, with a resignation in your voice that no five-year-old ought to have. “I didn’t want to stay anyway.”

That was a lie; I knew how much you had been looking forward to seeing your friends.

“You know how, when there’s a rock in the water, the water just moves around the sides of it as if it’s not there?” you said. “That’s kind of how the other kids acted when you were talking to Miss Katie.”

How could those teachers—or those other kids—not see how easily you bruised? I kissed you on the forehead. “You and I,” I promised, “are going to have so much fun this afternoon, you aren’t going to know what hit you.” I leaned down to hoist you out of your wheelchair, but one of
the Velcro straps on the cast popped open. “Shoot,” I muttered, and as I jostled you to one hip to fix it, you dropped your Ziploc bag.

“My rice!” you said, and you instinctively twisted in my arms to reach it, which is exactly the moment I heard the snap: like a branch breaking, like the first bite of an autumn apple.

“Willow?” I said, but I already knew: the whites of your eyes had flashed, blue as lightning, and you were slipping away from me into the sleepy trance that would overcome you when it was a particularly bad fracture.

By the time I settled you in the back of the van, your eyes were nearly closed. “Baby, tell me where it hurts,” I begged, but you didn’t answer. Starting at the wrist, I gently felt up your arm, trying to find the tender spot. I had just hit a divot beneath your shoulder when you whimpered. But you had broken bones in the arm before, and this one wasn’t stuck through the skin or twisted at a ninety-degree angle or any of the other hallmarks I associated with the kind of severe break that made you slip into a stupor. Had the bone pierced an organ?

I could have gone back into the school and asked them to call 911, but there was nothing an EMT could do for you that I didn’t know how to do myself. So I rummaged in the back of the van and found an old People magazine. Using it as an immobilizer, I wrapped an Ace bandage around your upper arm. I winged a prayer that you wouldn’t have to be casted—casts made bone density drop, and each place a cast ended was a new weak point for a future break. You could get away with a Wee Walker boot or an Aircast or a splint most of the time—except for hip fractures, and vertebrae, and femurs. Those breaks were the ones that made you go still and quiet, like now. Those breaks were the ones that had me driving straight to the ER, because I was too scared to handle them on my own.

At the hospital, I pulled into a handicapped spot and carried you into triage. “My daughter has osteogenesis imperfecta,” I told the nurse. “She’s broken her arm.”

The woman pursed her lips. “How about you do the diagnosis after you get a medical degree?”

“Trudy, is there a problem?” A doctor who looked too young to even be shaving was suddenly standing in front of us, peering down at you. “Did I hear you say OI?”

“Yes,” I said. “I think it’s her humerus.”

“I’ll take care of this one,” the doctor said. “I’m Dr. Dewitt. Do you want to put her in a wheelchair—”

“We’re good,” I said, and I hoisted you higher in my arms. As he led us down the hall to Radiology, I gave him your medical history. He stopped me only once—to sweet-talk the technician into giving up a room quickly. “Okay,” the doctor said, leaning over you on the X-ray table, his hand on your forearm. “I’m just going to move this the tiniest bit…”

“No,” I said, stepping forward. “You can move the machine, can’t you?”

“Well,” Dr. Dewitt said, nonplussed. “We don’t usually.”

“But you can?”

He looked at me again and then made adjustments to the equipment, draping the heavy lead vest over your chest. I moved to the rear of the room so the film could be taken. “Good job, Willow. Now just one more of your lower arm,” the doctor said.

“No,” I said.

The doctor looked up, exasperated. “With all due respect, Mrs. O’Keefe, I really need to do my job.”

But I was doing mine, too. When you broke, I tried to limit the number of X-rays that were done; sometimes I had them skipped altogether if they weren’t going to change the outcome of the treatment. “We already know she’s got a break,” I reasoned. “Do you think it’s displaced?”

The doctor’s eyes widened as I spoke his own language to him. “No.”

“Then you don’t really have to X-ray the tibia and fibula, do you?”

“Well,” Dr. Dewitt admitted. “That depends.”

“Do you have any idea how many X-rays my daughter will have to get in the course of her lifetime?” I asked.

He folded his arms. “You win. We really don’t need to X-ray the lower arm.”

While we waited for the film to develop, I rubbed your back. Slowly, you were returning from wherever it was that you went when you had a break. You were fidgeting more, whimpering. Shivering, which only made you hurt more.

I stuck my head out of the room to ask a technician if she had a blanket I might wrap around you and found Dr. Dewitt approaching with
your X-rays. “Willow’s cold,” I said, and he whipped off his white coat and settled it over your shoulders as soon as he stepped into the room. “The good news,” he said, “is that Willow’s other break is healing nicely.”

What other break?

I didn’t realize I’d said it aloud until the doctor pointed to a spot on your upper arm. It was hard to see—the collagen defect left your bones milky—but sure enough, there was the ridge of callus that suggested a healing fracture.

I felt a stab of guilt. When had you hurt yourself, and how could I not have known?

“Looks like it’s about two weeks old,” Dr. Dewitt mused, and just like that, I remembered: one night, when I carried you to the bathroom in the middle of the night, I had nearly dropped you. Although you’d insisted you were fine, you had only been lying for my sake.

“I am amazed to report, Willow, that you’ve broken one of the bones that’s hardest to break in the human body—your shoulder blade.” He pointed to the second image on the light board, to a crack clear down the middle of the scapula. “It moves around so much, it’s hardly ever fractured on impact.”

“So what do we do?” I asked.

“Well, she’s already in a spica cast…Short of mummification, the best thing is probably going to be a sling. It’s going to hurt for a few days—but the alternative seems like cruel and unusual punishment.” He bandaged your arm up against your chest, like the broken wing of a bird. “That too tight?”

You looked up at him. “I broke my clavicle once. It hurt more. Did you know that clavicle means ‘little key’—not just because it looks like one but because it connects all the other bones in the chest?”

Dr. Dewitt’s jaw dropped. “Are you some kind of Doogie Howser prodigy?”

“She reads a lot,” I said, smiling.

“Scapula, sternum, and xiphoid,” you added. “I can spell them, too.”

“Damn,” the doctor said softly, and then he blushed. “I mean, darn.” His gaze met mine over your head. “She’s the first OI patient I’ve had. It must be pretty wild.”

“Yes,” I said. “Wild.”

“Well, Willow, if you want to come work here as an ortho resident,
there’s a white coat with your name on it.” He nodded at me. “And if you ever need someone to talk to…” He took a business card out of his breast pocket.

I tucked it into my back pocket, embarrassed. This probably wasn’t goodwill as much as it was preservation for Willow—the doctor had evidence of my own incompetence, two breaks up there in black and white. I pretended to be busy rummaging for something in my purse, but really, I was just waiting for him to leave. I heard him offer you a lollipop, say good-bye.

How could I claim to know what was best for you, what you deserved, when at any moment I might be thrown a curveball—and learn that I hadn’t protected you as well as I should have? Was I considering this lawsuit because of you, or to atone for all the things I’d done wrong up to this point?

Like wishing for a baby. Each month when I’d realized that Sean and I had again not conceived, I used to strip and stand in the shower with the water streaming down my face, praying to God; praying to get pregnant, no matter what.

I hoisted you into my arms—my left hip, since it was your right shoulder that had broken—and walked out of the examination room. The doctor’s card was burning a hole in my back pocket. I was so distracted, in fact, that I nearly ran over a little girl who was walking in the door of the hospital just as we were walking out. “Oh, honey, I’m sorry,” I said, and backed up. She was about your age, and she held on to her mother’s hand. She wore a pink tutu and mud boots with frog faces on the toes. Her head was completely bald.

You did the one thing you hated most when it happened to you: you stared.