A Life Everlasting Read Online Free PDF Page A

published in a number of languages and has been visited by millions of people around the world—is filled with photographs and stories from other moms and dads who had been down the road Ross and I were now traveling. It was a godsend.
    One story in particular caught my eye. A woman named Allison Andrews, from Shreveport, Louisiana, also had twins, Sarah and Faith, and Faith had anencephaly. I emailed Allison the day after our diagnosis. She responded the same day, saying she would be happy to talk.
    The diagnosis gave us something significant in common. I was grateful that a fellow human being, twelve hundred miles away, was willing to help me just because I would be going through the same thing. She signed off on her email, “Hang in there, girl.” My pen pal and I emailed back and forth a number of times, and arranged a phone call two weeks later. Ross listened in to my end of the conversation.
    â€œI am so touched that you emailed me. I have been in your shoes, and I know exactly how you feel,” she said.
    Hearing those words felt like when a cold shower finally turns warm. My emotions unclenched.
    She warned me to expect awkward moments with friends and strangers, and mixed emotions—and she offered practical advice about the labor, and the funeral. We talked about things I would not dare ask anyone else in the world.
    â€œYears before I ever had children, I heard about someone holding a child that died, and I remember thinking, That’s morbid and creepy . Well, I ate my words!” she said. “Because when it’s your child, you react however your heart feels. I held Faith for three hours after she passed away, and those hours were precious to me. The hardest part was handing her over to the nurse.”
    Then she changed the subject, and this one brief exchange changed everything.
    â€œHave you heard about the study at Duke?” Allison asked. She explained that researchers at Duke University were trying to find a cause or a cure for anencephaly. She and her husband, Charles, had contributed cord blood from their twins, along with their own blood, to help advance the study. Not quite realizing how important this would turn out to be, I nevertheless wrote down the words Duke study .
    As we wrapped up our conversation, I felt a sense of comfort. I was not alone.
    â€œYou will never fully heal from it, but it gets better,” Allison said. “You will be okay. And call me any time you want to talk.”
    After we hung up, I felt something I hadn’t felt in a while: a smile on my face. I had a new friend.
    The Duke Center for Human Genetics (now called the Duke Molecular Physiology Institute) was looking for families who were expecting a newborn diagnosed with anencephaly to participate in a study called “The Hereditary Basis of Neural Tube Defects.”The idea was to identify the genes that contribute to the development of the neural tube—the tube-shaped structure in embryos that becomes the brain and spinal cord—with the hopes of developing better preventions and treatments and possibly a cure. Participants were required to speak to a coordinator, complete a medical history, provide a blood sample, and arrange to provide a sample of cord blood from the baby—or, in the case of twins, from both babies. I sent an email to the study contact to see if we might be eligible.
    â€œAre you sure they are identical twins, and not fraternal?” the coordinator, Heidi Cope, asked when we spoke on the phone. She sounded suspicious.
    â€œYes, that’s what my doctor told me. For sure.”
    â€œWell, if that is true, that is rare, and we would be very grateful for a sample like that.”
    Suddenly, something that had caused us only pain seemed like it might have a higher purpose. I resolved to make this donation happen.
    Having first spent several weeks getting used to the surprising news that we were having twins, we spent the next several weeks