Introduction

I wrote this book because it fell on me. It started as a snowflake and ended as an avalanche.

When I want to understand or remember something, I tend to take notes or write about it. Writing gives me the paradoxical power of emotional distance and depth. I can plumb because I’ve climbed up the mountain and have a wider, clearer view. A photojournalist once told me that the camera lens between his eye and the horrors he witnessed while covering wars enabled him to take the ghastly pictures he did. “If I’d seen the carnage without the camera, I couldn’t have borne it,” he told me. “I couldn’t have done my job.”

This book tells the story of my family. It’s not the whole story—who can ever tell that?—but it’s a vital slice.

The action in Unstoppable Heart begins with a sudden gush of blood down my leg in the twenty-ninth week of pregnancy. From there I take you with me into the world of premature birth, surgery on unanesthetized infants, disability issues, the death of my son Michael, organ donation, choices about pursuing lawsuits, decisions about having more children, the impact that schools and religious and medical institutions have on families, ethical wills, and the illnesses and deaths of my husband and my father.

But this world also contains joy and laughter: mischievous toddlers conducting midnight toast parties; an exhilarating monorail ride upfront with the conductor at Disney World; an extraordinary, loving relationship between brothers; a dog who joined in the brothers’ games; and a shimmering, shining love among and between parents, children, and siblings.

For the eight years Michael lived, he defined our
family. The early struggle depicted in this memoir
was whether Michael would live to leave the neonatal intensive care unit. The next step was how to teach—and learn from—our disabled child. He thrived for a time and then suddenly died. A later struggle was whether the interference of a hospital worker would disrupt our living link to our son—our correspondence with the mother whose son received Michael’s donated heart. The final struggle was to find and meet the recipient, to hear Michael’s heart beat once more, and to embrace this young man, my heart-son, and his child, my heart-granddaughter, who live because Mikey died.

My story is particular to me, my family, and my circle. How those events occurred and how they were perceived and acted upon are unique to me. But my microcosm is within the macrocosm we all share—that larger circle that encompasses us all. As humanistic psychologist Carl Rogers said, “What is most personal is most universal.”

All of us have had loss and sorrow as well as joy and delight. We lean on and learn from each other, wiping each other’s tears and sharing blessed laughter. Remember the times you and another laughed so hard you had to prop each other up? What a glorious feeling it is to be “helpless” with laughter. We must persist through the bad times, but let’s perpetuate the good times by ruminating happiness instead of sorrows or grudges.

Yes, we take a terrible chance when we love; but if we don’t love, we don’t live.