28
On a Saturday in early June, Kathy and I walked to the Brooklyn Museum. It was hot, and we were desperate for the cool spray that blew off the fountain in front of the museum. As we watched the kids play in the water, I was thinking of whether to tell Kathy about Gracie. We’d been friends for three seasons, and it had been so nice not to tell. To pretend, even to myself, that there was no story. To put on this puppet theater, starring Gracie as a healthy child. Now, though, I wanted Kathy’s counsel.
I dithered until it was time to head home. We each pushed our double strollers toward Webster Place. On the slightest of inclines, we wheezed.We weren’t really young moms; we were just moms with young kids. It was a soft night; the kids were cooling down, drowsing off.
I took a breath. I was afraid she’d be mad at me for withholding something so big for so long.
“Kath.”
She kept walking, pushing uphill, looking toward me. “Yeah?”
“Kathy.”
She looked over at me.
“I’ve been meaning to tell you this thing, but I don’t want to freak you out…”
“Yeah?”
“Gracie is sick.”
“Sick how?”
I looked down into the strollers; both my kids were sleeping. So was Eden. Only Chloe, redheaded eight-month-old, was awake. “She was born sick,” I said. “She has a blood disease.” We were walking along the edge of Prospect Park, under the deep shade of old trees. Benches lined the sidewalk.
“Let’s sit,” Kathy said. “The kids won’t wake up.” She handed Chloe a graham cracker. Chloe grasped it in both hands and drew it to her mouth lovingly.
“She doesn’t make red cells. Or she makes them, but they fall apart before they mature, so she has to get blood transfusions every three or four weeks.”
Kathy kept looking at me. She didn’t shout, “Are you kidding me? Is this a weird joke?!” She didn’t glaze over. She was quiet and calm and curious. “So what does that mean? Can she do that forever?”
I explained that people could live into adulthood like that, always getting transfused. But that the problem was every time we gave her blood, we were also giving her iron, and over time that iron would accumulate in her lungs and heart.
Kathy reached over to Gracie and pulled her sundress over her knees, a protective gesture. A small act of ownership. I wanted to throw my arms around her or burst into tears. But we weren’t like that. Even if we wanted to be sloppy, we would hold ourselves in check. We were the moms now, not the kids.
“OK,” Kathy said, as if accepting the facts could abrade them, shrink them. “What can you do? What are you going to do?”
“We can transplant her. That would be a cure. A bone marrow transplant,” I said.
“A bone marrow transplant?” She looked like someone who’d received an electrical shock; her spine went straight, she lost her air of languor. Her look said, Let’s not lose our heads. Bone marrow transplant is drastic; it is losing one’s head. Every bone marrow transplant is essentially a Hail Mary pass. And still, it was what we had.
“Isn’t there something else you could try first?” she said. I shook my head.
“This is our only card,” I said. “We can play it or not play it, but it’s the whole deck.”
I stood up, pulled my shirt away from my chest. It was still hot, and my skin and brain felt coated and clogged. Kathy stood too, and we walked on subdued. I told her about Gracie’s chelation regime, how we had to pull the iron out of her organs, the little evening clutch of a machine we hooked her up to every night. The conflicting advice we were getting from other doctors in contrast with Dr. Kurtzberg’s confidence, which had a synergistic effect on my fears and determination, making me both more afraid of transplant and more convinced we should do it.
“When are you going to decide?” Kathy asked, as we turned the corner onto Webster Place. I looked down its length of cheerful pastel Victorians. Some had rockers on the front porch. This was a special block. I reveled in our luck at landing here.
“I don’t know,” I said. “If Gracie keeps spiking mysterious fevers, and going all rag doll, it might be decided for us.”
Kathy’s house was first, near the corner, and we paused in front of her door. She reached to hug me. We were busy people, always handing things to each other or to the kids. We didn’t bother with actual hugs very often. But now she held on. Her hair smelled good. I knew she used Pantene, but she smelled like Herbal Essence—which gave me a hopeful, serene feeling.
“I’m glad you told me,” Kathy said. “I’m not glad it’s true. But I’m glad I know.”
29
As we were leaving the house for Gracie’s first blood transfusion of the summer, our neighbors across the street happened to be climbing into their car. Gracie looked at them, waved, then asked, “Are they going to get their blood?”
Yes, we wanted to say. Instead Brian said, “Probably not, sweetie. Not everyone gets blood.”
“But when you and mommy were little, you got your blood, right?”
Brian and I traded a look.
“Well,” I said, “some people don’t get blood. And other people do, like you.” I was hoping this sounded as if she was not alone in her situation.
“Who gets blood that we know?”
We faltered. Why had we not—in anticipation of this question—befriended a few hemophiliacs? Then I remembered accidents. Fabulous, blood-spilling accidents.
“Uncle Dawa needed blood when he had a crash in the car!” I said.
“Did he like getting blood?” Gracie said.
“I’m not sure. Is it fun for you?”
“No.” She seemed unsure of whether to pity or disdain me. “It’s not fun.”
We were forever trying to figure out how to talk with Gracie about her sickness. She knew she had it, but she just hadn’t known, until then, that not everyone else had it too. We wanted her to see herself as normal, as essentially fine. But we didn’t want to sell her a story of herself that was untrue.