Happiness: The Crooked Little Road to Semi-Ever After

“I take it back,” I said. And rolled my eyes in the opposite direction. I nested into him.

Brian kissed me. I kissed him back, quickly. Any moment, the great veil of exhaustion would drop. Or my mood would shift against my will.

“Thanks for the reversal,” Brian said.

He picked up the remote. “Should we?”

We watched The Wire. Watching The Wire is not the same as making love, but it’s something.





47

To celebrate Gracie’s fourth birthday, we planned a visit from Kathy and Steve and Eden and Chloe, our Brooklyn tribe. In advance of their visit, Gracie and Eden talked on the phone.

“Eden, do you think I am still three years old?” Gracie said. “I am not. I am four!”

A few days before they arrived, Gracie woke up bearing a striking resemblance to Ernest Borgnine. This was the rampant, random hair growth of cyclosporine, one of the drugs that prevented her body from rejecting Gabe’s marrow. The hair was very dark and downy and grew in a sort of Uncle Fester pattern, a thick fringe along the hairline and forehead and then down across the eyebrows and cheeks. Brian said she looked like Lon Chaney Jr. as the Wolfman.

When she saw the hair on her face, she said, “Mommy, there is something horrible that we have never noticed. This!” She pointed to the darkening mustache above her lip. She’d been standing on a table to see into the mirror; she jumped down shouting, “Now presenting the most Gracie-est of jumpers.” Problem dismissed. But at bedtime she said, as if working out the solution to an intractable problem, “I know! I’ll go deep, deep inside the forest, where they can’t find me.”

What would Eden make of her friend, as wolfman?

When they arrived late on Thursday night, exhausted from the drive, Eden dashed into Gracie’s room and shouted, “Hi Bracie!” The adults stood silent, eavesdropping: long pause, in which (we assumed) Eden was taking account of the many changes in her friend’s appearance. Finally, “Are you a girl or a boy?”

“I’m a girl,” Gracie said, unruffled. Stating the facts. And they both seemed satisfied that everyone was who they said they were.

On the last day of their visit, we took the kids to the Museum of Life and Science, to its legendary butterfly tent. When we got there I realized how stupid I’d been. Of course it was not made of netting. It was an enclosed plastic dome, which Gracie couldn’t enter. She couldn’t be sealed into a crowd, period. Not in a store, a movie theater, a mall. Not even in a butterfly tent. Gracie saw this as ludicrous. What harm could butterflies do her?

She begged to go in. When I told her there were too many people and thus too many germs, she said, “I won’t breathe the whole time, Mom, I promise.”

Eden, in solidarity, waited outside with her. It had rained hard earlier, and they ran in circles through the puddles, playing nothing. Just running, two girls glad to be getting their heads damp and their feet wet. “Remember,” Kathy said, “when they got drenched at Coney Island and thought it was the best thing that ever happened to them?”

That is what a friend is, I guess: someone who sees the potential in you, even when you can’t go in the fun place; someone who, given a second, accepts you as either a girl or a boy. These two people couldn’t yet recite their address or fry an egg, but they enjoyed a complex relationship. They could accommodate foundational changes, hurt each other’s feelings, forgive, reminisce, crack each other up. Run for it.

Later, we bade good-bye to Kathy and Steve and Eden and Chloe on our driveway.

The kids played in the yard, procrastinating. Kathy and I leaned against their van, procrastinating. All of us trying to squeeze more out of the last few minutes. The grown-ups had spent three days talking, but we’d also been bathing and feeding four kids; we’d barely said anything.

“Are you guys happy?” I asked, pointing my chin toward Steve.

“Mostly. Mainly on the weekends and after ten p.m. You?”

“Is there a category between sort of and mostly?”

She slung an arm around my shoulder, I slung one back. More to say, no time to say it.

“Are you writing?”

“I’m writing,” Kathy said. “If you count writing in my head, in the five minutes before I fall asleep.”

We laughed but we were sad. It was astonishing how little time there was to make sense of the world.

Their gang climbed into the van and drove away. Our gang stood on the driveway waving. Gracie said, “I hope Eden knows me when I get back to Brooklyn.” Gabriel watched Gracie’s face fall as the van pulled out of sight.

“Gracie,” he said, “are you sad when I leave you?”

“I don’t know, Gabe,” she said. “Will you be sad when I leave you?”

Let’s not find out. Let’s all stay where we are.





48

Day 100 arrived; we did not go home.

We’d known we wouldn’t. Day 100 was always a pretty mirage to trudge past. Instead, we made bubbles. The humid, still-cool evening was perfect bubble-making weather. Spring drew an ad hoc community of transplant families onto the common lawns at twilight. We stood in clusters, reciting our kids’ strange side effects as incantations to stave off worse: hair loss, hirsutism, muscle weakness, deformed toenails, fungal infections, gooey eyes, bacterial invasion of the central line, loss of appetite, ravenous appetite, hearing loss, neuropathy of the feet, fingers, and knees, light sensitivity. We could go on.

We began to do this every night: talk about how long it might be until we could return home; discuss families we knew in common; list our rational and irrational fears. If a child was readmitted to the ward, or transferred to the PICU, we talked about it. With agony for the other family. With guilty relief that it was not us.

We talked and made bubbles.

The pursuit of the perfect bubble became an obsession. The bigger, the better. We bought special soaps, glycerin, a designated bucket, and complicated bubble wand gizmos, which could also, incidentally, be used as a lasso, a jump rope, or a stick with which to poke your sibling. The kids held their breath each time we dipped the bubble wand into the bucket of suds, lifted it out, and slid the loop open. Mostly what we made were filmy circles of iridescent wavering would-be bubbles, which never quite graduated into spheres. They would quaver and ripple, inflate for an instant. Then pop.

One night when I opened the loop, a huge shimmering lima bean sprang into the air. It floated briefly upward then descended to hang inches above a dormant rose bush. The kids nearest gave an audible gasp. The bubble was beautiful and unexpected; tremulous but whole. “She made it,” Gracie said, to no one in particular. We held our collective breath; the bubble’s surface swam with swirled color. In a moment it might pop, it would pop, but for this instant, it was our glory.

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