The discussion about “motes” or way of referring to children born with a disability is great: “disabled”, “different”, “with special abilities”, “with different abilities” children, “special” children, children “ with disabilities ”,“ disabled ”,“ deficient ”,“ diminished ”. The fact is that, who are parents of children born with a congenital disease, we know how difficult it is to assume the birth of the disabled child and we know at heart the process of acceptance and reorganization of our family lives.
Before the news that our baby is a carrier of a disabling disease we are deeply affected. From the moment of birth, we experience a mixture of confusing sensations, not only because of the diagnosis, but because of the intense feelings towards the baby and ourselves. It is logical: we imagine and wait for a little person during pregnancy and we encounter another, different from the one we fantasized for nine months. There begins the duel, whose elaboration is complicated, because it means separating ourselves from that ideal son to approach the reality of the disabled child. This is a long but necessary process, that of "accepting" the child.
The initial state of shock and anguish is followed by a state of anger or sadness. I remember when my husband and I were diagnosed after the birth of our youngest daughter, Ruth: Leber's congenital amaurosis. "Impossible", We think,"The doctors have been wrong; our daughter can't be blind" This is the hardest time to go through: that of denial. For mothers, it is doubly laborious: we have not yet recovered from childbirth, our puerperium begins, and we are already gathering strength to overcome. Finally, we find balance and we are flooded after a sense of confidence in our own maternal capacities to care for and love our child as he is. The situation is reorganized, adjusted, and the family projects their life based on the needs of the new being.
The important thing is, once the pain has been overcome, to reconstruct new fantasies and expect countless gratifications from this baby that was not expected. After all, what it is about is “aspire to leave two lasting legacies to our children: one, roots; the other wings”.
Do you want to share your experience with us?
