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"Waiting With Gabriel" opens when the author and her husband learn
five months into their pregnancy that the baby she's carrying has a congenital
heart defect. One that will let their baby live perhaps a week — at the
longest. You won't read this book without crying. But you will be glad you did.
Amy Kuebelbeck's brave memoir will change you.
This first book from the award-winning Associated Press reporter and editor
deftly avoids the easy traps of maudlin sentimentality or self indulgence. Kuebelbeck
lets the poignancy inherent to the situation drive the narrative, engendering
compassion and understanding. In the end, the reader emerges with the author
to cherish life itself more deeply.
An ultrasound reveals that Gabriel has hypoplastic left heart syndrome (HLHS),
meaning the left side of his heart hasn't developed properly.
Kuebelbeck reports that congenital heart defects are the leading cause of
infant death. HLHS occurs in one of about every 5,000 births and affects approximately
1,000 babies — and their families — in the United States every year.
Gabriel's story puts those statistics in the context of a family.
Kuebelbeck and her husband, Mark Neuzil, a college journalism instructor,
face an awful decision. They can opt for a traumatic series of corrective surgeries,
gamble on the remote chance of an available heart for transplant, or let their
son die naturally. They do not know how long the surgeries or transplant might
prolong their son's life; the only guarantee those procedures carry is pain
and suffering. "It seemed to us that the Solomonic choice we were being
asked to make on behalf of our son was not between life and death but between
a painful death and a peaceful one," she writes.
Medicine cannot save their son. "Our culture clings to a number of comforting
myths about modern medicine, including the ideas that technology can fix everything
and that finding a cure is just a matter of hauling oneself to the right hospital,"
Kuebelbeck writes. But, she learns, sometimes it just comes down to you and
life. And death.
God cannot spare their grief. Roman Catholic by birth, and "spiritually
intrigued and institutionally skeptical" by her own description, Kuebelbeck
and Neuzil are comforted to meet a sympathetic priest remarkably knowledgeable
about HLHS in Father Bill Baer. He waits patiently with them, ministering to
them with his presence.
"Fortunately, we had had already stumbled across the idea that God was
grieving with us. . . . As the waves of grief tossed us end over end, slamming
our faces into the sand, we clung to the belief that God was not abandoning
Gabriel or us."
This belief sees the couple through excruciating moments such as a shower
for the healthy baby Kuebelbeck's sister carries, shopping for a miniature coffin
and saying goodbye to Gabriel. Throughout, Kuebelbeck and Neuzil gracefully
shoulder their grief.
Kuebelbeck concludes that perhaps Gabriel's legacy will be to pave the way
for others' grief. Indeed, this memoir's honest and open narrative advances
awareness of the pain experienced by families that lose babies — through
miscarriage or otherwise. It validates their grief and affirms their healing.
"Waiting with Gabriel" is an important contribution to a subject area
long dominated by the hopelessly sentimental novel "The Christmas Box."
Beyond that, Kuebelbeck's tender voice and graceful story inspire hope for
anyone beset by pain and suffering. Medicine may not be able to prevent it.
God may not spare it. But love sees them through it.
