The Life You Longed For Read Online Free Page A

“If you were a bird, this is where the flight muscles would be attached—here, to the bone protecting the heart.”
    â€œAlligator!” Jack insisted.
    â€œA bird,” Grace laughed. “Maybe a goose like you. Or a swan.”
    â€œThey mate for life, don’t they?” Stephen asked. “I guess that settles it for me. I’d have to be a swan too.”
    Max groaned. “Gross, you guys, I’m trying to eat.”
    â€œMama, what does ‘mate for life’ mean?” Erin asked.
    â€œIt means that you stay with one person that you really love for your whole life.”
    â€œLike you and Daddy?”
    Something fluttered in Grace’s chest. A bird taking flight. “Yes,” she agreed. “Like me and Daddy.”
    â€œCan I be a swan too, Mama, so I can stay with you and Daddy my whole life?”
    Max snickered. Grace warned him with a look. “Of course, you can be a swan.”
    â€œI swan too?” Jack asked.
    Grace laughed. “Yes, you too.” He looked so good, she thought. If it weren’t for the nasal cannula and the raspy hiss of his oxygen, you almost wouldn’t know he was sick. For a moment, she couldn’t swallow, her throat tight. Please let him live, she thought.
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    Everything was done: stockings filled, presents placed under the tree, a note from Santa thanking Erin for the cookies. Stephen was bringing in firewood for the morning. Grace was checking her e-mail, most of the messages from the women in her mitochondrial support group. She often felt closer to these women than to anyone, including Jenn, her mother, even at times, Stephen. She hadn’t even met most of them, yet they had pictures of each other’s kids on their refrigerators, knew the kids’ birthdays and what complex of mitochondrial disease they had, what their symptoms and prognosis were. They knew the same specialists, had been to the same hospitals: the Cleveland Clinic, Scottish Rite in Atlanta, both Children’s and St. Christopher’s in Philadelphia, the University of California, San Diego, a handful of others. It was a small world.
    As she sat at the computer now, waiting for the e-mails to download, she couldn’t help but smile, despite the edge of sadness that had been pushing at her all night. Most of the messages would be from the women in the support group, wishing one another happy holidays, sending prayers for whoever’s child wasn’t doing well, maybe sharing a joke. Like the string theory of the universe, which held that the world was composed of billions of invisible threadlike strings, constantly moving, vibrating, holding the universe together. The support group was similar, Grace thought. All these woman reaching across vast distances to seek or offer consolation, encouragement, support. Kempley in North Carolina, Anne Marie in Seattle, the woman in Australia whose five-year-old daughter had just died from mitochondrial-related complications, another mother from Japan, Beth from Pittsburgh. Hundreds of invisible messages, tiny strings of words, moving across states, entire continents. Holding up the world.
    Mostly, the women listened to one another vent and grieve—and laugh, which they had to do, and which no one who didn’t have children as ill as theirs could begin to understand. They traded medical articles and advice. It was Kempley who insisted that Jack’s muscle biopsy had to be redone if Grace wanted any chance of locating the exact mutation in the mitochondrial DNA. Kempley who explained to Grace the difference between a fresh and a frozen muscle biopsy. Kempley who explained why it mattered.
    And Kempley, of everyone in Grace’s life, in whom she imagined confiding about Noah. Kempley, who maybe wouldn’t approve, but who wouldn’t judge her, wouldn’t think she was a bad mother, a bad person. In Grace’s mind, they were the same thing.
    Of course, there was no message