No one wants a disabled child. The first wish of a future mother is a healthy baby, who has her features, and also some of her father. But life sometimes decides otherwise, and the new mother is then completely overwhelmed. Of course, everyone knows that genetic diseases exist. And even more pregnant women, who know the risks. But nothing can really prepare them for such an eventuality.
A PAINFUL SHOCK
It’s a real tsunami, the shock, the unexpected. All the dreams that the mother had for her child suddenly vanish. It’s as if a part of his life had just collapsed. She finds no buoy to cling to. It is nothing more than suffering and pain.
A FEELING OF IMPOTENCE
“The initial shock is often followed by a period of denial,” reports Francine Ferland in her book Beyond Physical or Intellectual Deficiency: A Child to Discover. “As the miracle of the perfect child does not occur, distress follows.” The feeling of powerlessness that overwhelms her makes her doubt her abilities as a mother and, even more, her ability to take care of a child with Down’s syndrome. She wonders how she will take on all these new responsibilities, projects herself into the future, and imagines her little one at the age of eight or nine: will he be able to go to school? The difficulties of adolescence and adulthood, all this is already jostling in his head.
GUILT, SHAME, AND AMBIVALENCE
Then comes the guilt, even the shame of the mother’s esteem was not at its zenith before the hard news. She makes herself personally responsible for the birth of this handicapped infant. Wasn’t society asking him for a “normal” child? So who is to blame? After all, she was the one who wore it.
Who says guilt also says overprotection. It happens, for example, that the mother refuses to entrust her baby to anyone. “She may even wish that long-awaited child to die. And, at the same time, she is very afraid that he will die, specifies Francine Ferland. In this ambivalence, few mothers in this situation manage to express it.
LIVE IN THE PRESENT
“The unexpected birth of a child with trisomy 21 is an ultra-violent breakthrough in the intimacy of his parents,” explains pediatrician Jean-François Chicoine.
Is there hope? Do all these negative feelings persist? Unfortunately, some mothers just don’t adjust to reality. Others manage to take control of their lives and make the most of the ordeal that afflicts them. By becoming aware of their emotions, by sharing them with loved ones, they manage to understand their impact and control them. Which leads them, very slowly, to finally forge an emotional bond with their newborn.
Despite her great distress, the mother must learn to live in the present and to appreciate every moment spent with her child. Imagining the future, anticipating problems, none of this is very useful. As they often say, “we’ll cross the bridge when we get to the river”.a
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