Marie-Odile Réthoré directs a research unit at INSERM.
She is well known to readers of Ombre e Luci. For many years she has worked as a pediatrician, bringing hope and trust to countless parents of newborns with disabilities. She remains deeply present to handicapped children and adults and walks alongside many families, calling them to the courage to love.
Parenting is without question the hardest job there is. Yet no one thinks to teach it to a couple before they have the right to bring life into the world!
It's difficult enough when everything goes well. But what do you say when, from the very beginning, there is illness, a genetic anomaly? It is true that this child will always be Giovanni or Luca or Natalia, fully human, unique and therefore irreplaceable: genetics proves this to us every day. And yet this child will carry and bear his disability for his entire life, and he will ask for our help.
No father and no mother ever chose to bring into the world such a fragile child, so complicated, a child who will lead them on an adventure they cannot even imagine. This child will overturn their entire hierarchy of values, put them under pressure, reshape them completely, day after day, and this will never end.
Ask parents of disabled adults—they will not contradict me.
But listen: this child never asked you to become slaves to his whims or to let your whole family live at his pace. He does not expect heroic parents who sacrifice themselves endlessly for him and who, from time to time, inadvertently let him know it.
What he really asks is to be seen as he is, with all his gifts (he has them), his flaws (he has them), his disability (it is real), and to be loved in truth—for himself, not out of condescension or pity. He asks to be guided and accompanied for his whole life, with respect for his dignity as a human person. He asks you to adopt him anew every morning when a new day begins, a day that may be very chaotic or may be the monotonous repetition of all the days before.
"Do Not Be Afraid"
Let us return to John Paul II's first words to the world: "Do not be afraid." Do not be afraid to be happy with your child, to tell him so, to show him, to share with him the joy of his progress and discoveries. That is how joy multiplies!
Let him live his childhood, let him have his experiences. Help him discover the world in his own way, and rediscover it with him. Trust in him—in his ability to grow, but also in his capacity to love.
Love him and let yourself be loved by him!
Do not be afraid to hate his disability, do not be ashamed to cry about it. God does not ask us to be heroes; He asks us to be saints. And these are not the same thing!
No, do not be ashamed to cry, to speak your suffering, your anger, your fear. Do not be afraid to ask the professionals everything about your child—his illness, how it will develop, the risk it might appear again in your family.
Most parents speak of the loneliness they felt at the moment their child was born disabled, and of the silence of the doctors: "They told me nothing!" Objectively this is not entirely true; in any case, that is how they experienced it. And how can you hear a message when your heart is shattered? It falls to us professionals to stand beside you, to listen, to walk with you through this awareness that takes so much time, to allow you to do the work of grief—at your own pace—for the child you had imagined and dreamed of, compared to the child before you now.
I dislike the word "grief" because in reality there is no death. This child has existed since the moment of conception. He presents himself to us after nine months of hidden life. It is for us to welcome him, to open our home to him, to guide him through childhood and adolescence. It is for us to allow his personality to flourish and for him to become what he truly is. He has been entrusted to us temporarily, not so we might hold him tight, but for a far more important reason: so that he can fulfill his humanity, mysterious as it may be.
You who are brothers or sisters of a boy or girl with severe disabilities, restless and unpredictable—do not be afraid to live your own life, to be happy, to bring friends home, to go out.
You who are brothers or sisters of a boy or girl with severe disabilities, restless and unpredictable—do not be afraid to live your own life, to be happy, to bring friends home, to go out.As parents you have the duty to proclaim loudly and clearly the rights of this child. If you stand alone it will not be easy, because you can quickly lose your way in the maze of bureaucracy. But you will not stand alone! If parent associations did not exist, we would have to invent them! They are only what the parents who make them up are. But they exist!
Love to That Extent
Some people, thinking they mean well, say to parents: "At least this child will stay with you in your old age." But you must love him in such a way that he can be happy without you and independent of you. How many parents struggle to take the step that will let their child leave home. They say: "You know, there's no place in the community, we'll see, there's no rush. There's the brother who has always taken such good care of him. What anguish to think what will happen after we're gone, after my husband and I die." And so they remain trapped in the anguish of waiting.
"I never imagined my daughter could be happy without me." That is what a wonderful father told me—a man who loved his disabled daughter tenderly. After her many brothers and sisters married, this girl found herself at home alone with a tired mother and a retired father. She became sad and lost her appetite. The family feared she was sick. In reality, she was bored to death. Her parents found the great courage to take that step. The girl moved into a warm, welcoming community.
Today she is perfectly integrated, happy, and brings happiness to those around her—including her parents, who after a very difficult time have crossed a new threshold. Yes, you must love your children to that extent!
You, Brothers and Sisters
It is not easy to be the older brother or sister of a severely disabled, restless, unpredictable child. Being the younger brother or sister is certainly not easier, and being the twin sibling is harder still. This is why I say to you, brothers and sisters, whatever your situation: do not be ashamed to be happy, to be healthy, to succeed in your studies. Do not be afraid to live your own life, to bring friends home, to go out, to love, to start a family. If you have questions, talk to a doctor about your brother's or sister's condition. And do not be afraid to love them, to help them do things your parents might be reluctant to teach them—riding a bike, climbing, skiing. Above all, help them keep and maintain their sense of humor; let them laugh when something goes wrong, let them speak even if they struggle with words and stammer. Do not hesitate to be their advocate with your parents and teachers. Help your parents, especially when your brother or sister moves into adulthood, help them cut the umbilical cord—but always, here too, with a little humor!
We can count on grandparents: they have great life experience, many have already known suffering, they have learned patience, they know how to listen, they have time.
We can count on grandparents: they have great life experience, many have already known suffering, they have learned patience, they know how to listen, they have time.And the Grandparents?
As for grandparents, their suffering is twofold. But we can count on them: they have great life experience, and many have already known suffering. They have learned patience and know how to listen; they have time. For this reason, many are ready to take the disabled child with them for a few hours or a few days, as the moment requires. They are ready to listen, to understand, to comfort, to teach. I remember a grandfather who, with the tip of his cane, showed his little grandson how to plant a rosebush. The small boy, despite his disability, was able to get on his hands and knees. I also remember another grandfather who took his granddaughter by train every day to a specialized center so she could attend while both parents went to work. Grandparents must never hesitate to offer their help and to let themselves be loved and admired by their grandchildren.
Finally, I want to remember those parents who had just lost their fourteen-year-old son, who had Down syndrome and a heart condition. The mother confided in a priest who was a friend: "I have never been able to achieve anything in my life." And he answered her: "You brought a man to heaven."
- Marie-Odile Réthoré, 1994
(OL no. 106)
A Prayer for the Family
O Lord, this family thanks you and praises you, because we are gathered in your name.
Grant each of us a sincere and good heart capable of giving trust and taking responsibility for the good of all.
Give us a generous heart that knows how to forget the offenses we have received, that knows how to recognize our own wrongs and take the initiative to ask for forgiveness.
Fill us with the will to be united with one another even when it costs sacrifice.
Let us know how to bear one another's burdens, striving more to give than to ask, so that we may live in your peace even in difficult times.
Grant that our family be a sign, Lord, of Christian openness, solidarity, and friendship to all who draw near to us.
Carlo Maria Martini