to get a peek at what was wrong. The kid’s ratchety noise turned pretty, like a dolphin singing, and suddenly the kid’s mother joined in.
The nurse called them, and they disappeared down the corridor. The mother caught Amy’s eyes as she passed the playhouse. She smiled but just kept going. When the office door shut behind them, Amy missed their odd song.
“Pretty music,” Alan said.
“Julia was singing,” Dianne said, holding her daughter’s hand as the young girl rolled her eyes. “I just joined in.”
“Hi, Julia,” Alan said. He crouched beside Julia’s wheelchair, smoothing the white-blond hair back from her face. She leaned into his hand for an instant, eyes closed with what appeared to be deep trust. Dianne stood back, watching.
Alan spoke to Julia. His tone was rich and low, the voice of a very big man. But he spoke gently to Julia, tender and unthreatening, and the girl bowed her head and sighed contentedly. He was her uncle; he had been her doctor for the eleven years she had been alive. In spite of their history, the awkwardness between them, Dianne would never take Julia to anyone else.
Alan encircled Julia with his arms, easily lifting her onto the exam table. She weighed very little: twenty-nine pounds at the last visit. She was a fairy child, with a perfect face and misshapen body. Her head bobbed against her chest, her thin arms flailing slowly about as if she were swimming in the bay. She was wearing jeans, and a navy blue Gap sweatshirt over her T-shirt, and Dr. McIntosh must have just tickled her because she suddenly gasped. At the sound, Dianne turned away.
She let herself have this fantasy: Julia was healthy, “normal.” She was just like all the other kids in the outer office. She could read books and draw pictures, and when you took her hand, it wasn’t ice cold. She would jump and dance and demand her favorite cereal. Dianne would know that her favorite color was blue because Julia said so, not from hours of watching for slight changes of expression as Dianne pointed at colors on a page: red, yellow, green, blue.
Blue! Is that the one you like most, Julia? Blue, sweetheart?
To be a mother and know your own child’s heart: Dianne couldn’t imagine anything more incredible. Could Julia even distinguish colors, or was Dianne just kidding herself? Julia could not answer Dianne’s questions. She made sounds, which experts had told Dianne were not words at all. When she said “la,” it did not mean “flower”; it was only a sound.
“How are you, Dianne?” Alan asked.
“Fine, Alan.”
“Julia and I were just having a talk.”
“You were?”
“Yep. She says you’re working too hard. Every kid in Hawthorne wants a playhouse, and you’re backed up till Christmas.”
Dianne swallowed. Nervous today, she couldn’t manage the small talk. She was at her worst during Julia’s exams. Her nerves were raw, and just then Alan reminded Dianne of his brother, of being left, and the worst of everything that could happen to her child; waiting for him to examine Julia made her want to scream.
Julia had been born with defects. A blond angel, she had spina bifida and Rett syndrome, a condition similar to autism. No talking, no for-sure affection. There was the maybe affection, where she’d kiss Dianne’s face and Dianne wasn’t really sure whether it was a real kiss or just a lip spasm. Dianne tended toward optimism, and she gave each smooch the benefit of the doubt every time.
Since birth Julia had had thirteen surgeries. Many trips to the hospitals – here, in Providence, and in Boston – had produced wear and tear on the spirit, sitting in those oddly similar waiting rooms, wondering whether Julia would survive the procedure. Hydrocephalus had developed after one operation, and for a time Dianne had had to get used to a shunt in her baby’s brain to drain off the excess fluid.
Dianne, so desperate to lash out at Tim, would often talk to herself.
“Hello! Darling! Kindly bring me a sponge – I seem to have spilled this little bowl full of our daughter’s brain water. Oh, you’ve left for good? Never mind, I’ll get it myself.”
Dianne’s heart never knew which way to twist. She teetered between hope and rage, love and terror. She hated Tim for leaving, Alan for reminding her of his brother, all doctors for being able to keep Julia alive but not being able to cure her. But Dianne loved Julia with a simple heart. Her daughter was innocent and pure.
Julia could not walk, hold things, or eat solid food. She would not grow much bigger. Her limbs looked jumbled and broken; the bones in her body were askew. Her body was her prison, and it failed her at every turn.
Her organs were hooked up wrong. Most of those early surgeries had been to correctly connect her stomach, bladder, bowels, and to protect the bulging sac on her smooth little baby back containing her meninges and spinal cord. Julia was the baby every pregnant mother feared having, and Dianne loved her so much, she thought her own heart would crack.
“You okay?” Alan asked.
“Just do the exam,” Dianne said, sweating. “Please, Alan.”
She took off all but Julia’s T-shirt and diaper. They had been in this very room, on this exact table, so many times. Alan was frowning now, his feelings hurt. Dianne wanted to apologize, but her throat was too tight. Her stomach was in a knot: She was extra upset this visit, her fear and intuition in high, high gear, and it wasn’t going to get better till after Alan did the exam.
Unsnapping Julia’s T-shirt, Alan began to pass the silver disc across Julia’s concave chest. His wavy brown hair was going gray, and his steel-rimmed glasses were sliding down his nose. He often had a quizzical, distant expression in his hazel eyes, as if his mind were occupied with higher math, but right then he was totally focused on Julia’s heart.
“Can you hear anything?” she asked.
He didn’t reply.
Dianne bit her lip so hard it hurt. This was the part of the exam Dianne feared the most. But she watched him, restraining herself and letting him work.
Julia’s body was tiny, her small lungs and kidneys just able to do the job of keeping her alive. If she stopped growing soon, as the endocrinologist predicted she would, her organs would be sufficient. But if she sprouted even another inch, her lungs would be overtaxed and her other systems would give out.
“Her heart sounds good today,” Alan said. “Her lungs too.”
“Really?” Dianne asked, although she had never known him to tell them anything but the truth.
“Yes,” he said. “Really.”
“Good or just okay?”
“Dianne –”
Alan had never promised to fix Julia. Her prognosis since birth had been season by season. They had spent Julia’s whole life waiting for that moment when she would turn the corner. There were times Dianne couldn’t stand the suspense. She wanted to flip through the book, get to the last page, know how it was going to end.
“Really good?” she asked. “Or not?”
“Really good for Julia,” he said. “You know that’s all I can tell you. You know better than anyone, any specialist, what that means.”
“She’s Julia,” Dianne said. The news was as good as she was going to get this visit. She couldn’t speak right away. Her relief was sudden and great, and she had a swift impulse to run full tilt down to the dock, jump in his dinghy, and row into the wind until she exhausted herself.
“For so long,” Dianne said, her eyes brimming, “all I wanted was for her to grow.”
“I know … How’s her eating?”
“Good. Great. Milk shakes, chicken soup, she eats all the time. Right, sweetheart?”
Julia looked up from the table. Her enormous eyes roved from