Pierre and Mol are a man and woman deeply in love. One day, their love becomes a child. They wait for her, speak to her while she is still in her mother's womb, preparing themselves for parenthood in the quiet uncertainty that accompanies all new beginnings. But everything changes when, only after birth, they learn that their daughter Liesje has spina bifida. Suddenly Pierre and Mol find themselves alone on a path they've never traveled. Questions flood in. Reflections. Hypotheses. Anger. And long, heavy silences—punctuated only by small revelations that gradually light the way forward. The doctor's cold words, poorly informed about spina bifida treatment options, do little to soften the shock. Instead, they create distance and, as Pierre tells us, "brutalize" him—robbing him even of time to fully absorb his daughter's birth. In the face of this, Pierre searches fiercely for different words. Words "for the birth and death of this different daughter." And in searching for them, he begins to understand. This book is born from that search.
Pierre describes how he and his wife must fight for the right to be parents—because they must first fight for their daughter's right to live. The doctors have already consigned her to death. Pierre's fatherhood, taken for granted during pregnancy, is now denied him. He must build it, imagine it, create it with new tools, and then hold it close within himself, even as support remains scarce. What emerges is a father who refuses to stop believing in his daughter, constantly moving her—against medical advice—into the garden of life so she can feel the warmth of the sun.
Pierre's long account unfolds through his discovery of Liesje's particular rhythms and the new rhythms of his marriage. He and Mol learn the time of isolation, the "cocoon" as Pierre calls it, where they retreat to find each other and share the grief that breaks them apart. They also learn the time of reaching outward, seeking support and building fertile relationships with the world beyond. Through continuous questions, doubts, and uncertainties, Pierre shows us what he and Mol created not only for their daughter, but for themselves. I believe these pages hold rich treasures for many readers.
Pierre's book, for instance, could be a valuable resource for a physician preparing himself humanly for the encounter with patients and their families. It speaks to doctors who, as the author hopes, will not flee from unanswerable questions—doctors willing to listen and constantly question their own methods, who understand that a parent's intimate knowledge of his child can deepen their research as much as their studies can. Doctors who look not only at the handicap but at the child.
This book is also useful for anyone wrestling with prenatal diagnosis, a question the author explores with humanity born from his own experience.
It speaks to teachers and those working on school integration. In 1978, Pierre reflected on Liesje's enrollment attempt with these words: "In this moment, I realize the world is not ready to welcome our daughter." Yet he also develops constructive reflections on every handicapped child's right to education in mainstream schools.
These pages offer solace for other families who have walked this difficult path or are seeking how to walk it. Together with Pierre and Mol, they discover the comfort that comes from sharing fear and the powerful energy of meeting other families like theirs. Pierre writes: "Meeting this family has thrilled us. They are very experienced, while next to them we still feel like complete beginners. They became skilled through challenges won and obstacles overcome. We learn more in one evening with them than in ten appointments with Dr. Jacobs."
Liesje, the child born to Pierre and Mol, gave birth to much else. Today Pierre Mertens is president of the International Association for Spina Bifida and Hydrocephalus and continues working with people around the world affected by spina bifida, creating new and vital words of life and hope for this reality. And—something very precious—he is a father who gives us his testimony.
Cristina Ventura, 2007
