I have been sent two books, one a parents’ resource and the other a parish resource, on the subject of Christian accompaniment of parents through the experience of a pre-birth diagnosis of possible disability. Because I Am, by Cristina Gangemi (Redemptorist Publications) includes reflections from parents in this situation and passages meditating on the life of Christ, showing how his closeness to the problems and difficulties of ordinary people, as well as prayer diaries for parents to record their own thoughts and experiences.
In her preface, the author describes her own response to learning she was the only survivor (at birth) of triplets and how this has affected her. In addition, she recounts her own grandson’s diagnosis of a medical condition at a 12-week scan and her own accompaniment of her son and daughter-in-law. The message of her books is that each person has intrinsic dignity as a child of God, whatever life-changing disabilities they may have. As she points out, “We can never know why a person exists”; thus our task is to accept and cherish everyone, especially the most vulnerable.
The books have come about as the result of a seminar, sponsored by the Pontifical Council for Culture, which took place at the Vatican on 23 June 2016 and which produced a “declaration of principles” under the name of the Living Fully Charter. In his foreword, Cardinal Gianfranco Ravasi illustrates the very moving response of the French philosopher Emmanuel Mounier towards his little daughter, Francoise, who was born with acute encephalitis and who showed her father what it means to “live fully”: “I have felt the sensation as I draw close to her small bed, without a voice, to be drawing close to an altar, to a sacred space where God speaks through a sign.”
This obviously is a very personal mystical insight. How can other members of the Christian community accompany parents of children diagnosed with disabilities, in practical ways? The books offer many thoughtful suggestions. My only caveat with the programmes and pathways they have devised is that sometimes these can seem to overwhelm the very people they wish to help. To give a personal example: as a mother of a daughter with a disability, I was once, to my acute discomfort, loudly and publicly “prayed for” by a fellow parishioner. I had to take her aside afterwards and point out that we all have our crosses and I would rather not be singled out as someone of special misfortune. Obviously Because I Am counsels tact and sensitivity, but well-meaning mishaps happen.
Rather than being prayed over I would have preferred a box of chocolates and/or a ticket to a concert. I only mention this anecdote to remind others that just as children with disabilities should not be defined by them, we parents are also human and don’t want to be wholly defined solely by one very significant aspect of our lives. The answer to isolation is most often a friend.
The parts of the books I liked best were the comments and thoughts of other parents in similar situations. Others can be sympathetic, but in my experience it is only other parents who have unspoken empathy. And gestures matter much more than words – such as the mother of a baby who died after birth who was greatly comforted by the sight of the midwife gently kissing her dead baby on her forehead as she lay in her cot – thus showing the baby’s unique and precious value.