"Our first child has been alive for a few minutes. My husband knows right away that he is mongoloid. Only hours later do I learn the verdict myself. My first reaction is that God has sent him to us, and we will know how to love him as he is.
Then a terrible struggle begins for me: on one side, a mother's instinct makes me desperately want the baby I have just given birth to close beside me (though he is receiving special care).
On the other, I find myself imagining what our life will be like with an abnormal child; I think of the fate reserved for these children…
We do not want this life—neither for him nor for ourselves.
Aware of this immense sorrow that lasts a lifetime, that can happen to any family, we have sought out other voices.
Death seems the only possible salvation; rebellion against God has entered our hearts."So speaks the mother of a two-year-old boy with Down syndrome.
Aware of this immense sorrow that lasts a lifetime, that can happen to any family, we have sought out other voices.
This issue of Ombre e Luci is dedicated to her, to her husband, to all the mothers and fathers who have received this verdict today or in years past at the most intense moment of their life as a couple: when a single word shattered the joy that follows the expectation of a first child. Disappointment, bitterness, despair, and rage settle like unwelcome masters in their hearts.
Aware of this immense sorrow that lasts a lifetime, that can happen to any family, we have sought out other voices—voices of parents further along in this trial—to help dispel, however modestly, the dark clouds that still gather over so many families today.
We aim to explain why this handicap exists, which many know only by sight;
- to help people believe that—as one mother, struggling to put the fullness of her life into words, says—"despite all the hardship and difficulty, our difficult Monica has given our whole family, grandparents and grandchildren alike, such a great richness of love";
- to help people hope; as Jean Vanier says of Cristiano, a thirty-year-old man with whom he lives—"he is a profoundly real person, he knows who his true friends are, he has a deep sense of others' suffering, he knows how to be compassionate, and he is very good at protecting those who are fragile."
We want every reader—parent or friend, young or old—to be convinced of this: as Jérôme Lejeune, the scientist, says, beyond wounded intelligence, "in that other reason that dwells closer to the heart, where emotions draw near to reality, where we say feelings and truth reside, in that most intimate and privileged realm, those with trisomy 21 find no greater obstacles than anyone else. In this sphere of the spirit where children, lovers, and poets meet one another, they are as free as we are, as free as any human being can be."