A Father Reveals His Disabled Son's Unique Gift

What reactions does a father experience when his child is born disabled? A father's response differs profoundly from a mother's. She carried the child in her body and wove a physical and psychological bond with him from conception onward. A father does not simply become the father of a disabled child. He is shaken at the deepest level of his being, in his very identity. The anticipated child naturally gave rise to immense hopes—hopes shattered, whether suddenly or gradually, by the discovery of disability. The long-awaited child fails to meet expectations. Both his inner world and his self-image collapse. His roles as husband and father lose their moorings. A vertiginous distance opens between him and his wife. Their ways of feeling are so different that communication itself becomes nearly impossible—precisely when understanding and mutual support are most needed. The father is assailed by multiple temptations: the impulse to reject this child, so different from the one he imagined; the fantasy of omnipotence that drives him to "normalize" the child at any cost; the urge to flee an unwanted, unbearable situation. He lives with these temptations painfully, and they breed shame and guilt. The father must wrestle with the difficulty of inscribing his son into his own life story, of securing acceptance from his extended family. He confronts frustration about transmitting his name, his family legacy, even his professional standing. His child's very existence introduces a powerful sense of death—death of the child, whose disability appears a premonition; death of the parent, whom the child's presence and future interrogate. *What will become of him when I am gone?* Disability seems to forbid parents the right to die. The father finds himself invaded by duties that exceed his strength and test his courage. How does one escape such negative feelings? The presence of disability is felt as a profound injustice and breeds guilt. When we endure harm without understanding its cause, we tend to blame ourselves. Neighbors will offer scientific arguments to convince us that no one is at fault. But learning that the child carries a faulty gene does nothing to ease the guilt—even though knowing the cause matters for determining what can be done. For the parent, what truly matters is "the cause behind the cause": Why did this happen to me? A father's first liberation comes through expressing his anger and being heard in the depths of his suffering without judgment. All these feelings—including the desire to flee—are legitimate. The second stage is accepting reality. This means grieving first for the imagined child (all fathers must do this), then for the child without disability. It is not easy to admit that certain skills every child acquires, his may not fully develop, or may develop on a different timeline. In place of the illusory goal of making the child "normal"—a devastation in itself—realistic objectives emerge: concrete progress to be made. The parents' gaze shifts from the negative catalogue of everything the child cannot do, to the positive focus on progress, milestones reached, bringing joy to all. What is the father's role and his particular responsibility in the marriage? I distinguish four paternal functions:

1. Give and foster physical life by confirming the child's sex and identity. The father possesses a more detached gaze on his child's body than the mother and may discover hidden symptoms or potential.
2. Initiate and develop intellectual life. This happens through language and basic learning, adapted to what the child is capable of. The goal is to cultivate the child's desire to learn at his own pace.
3. Introduce relational life. The father does this by entering into relationship with the child first, to gradually "separate" him from his mother. The father's role is to establish the rules of relational life: reminding the child of prohibitions, the limits of freedom that respect the freedom of others, the importance of forgiveness.
4. Finally, initiate and foster spiritual life. A disabled child may have a direct and simple access to God that has much to teach us. But the child must understand that God loves him as he is—perhaps even more so—and that God dwells within him.

These are ambitious goals. Yes, but be careful: no father can give his child a perfect body, the intellectual capacity he hoped for, success in love. He can only help a unique person emerge, with all his weaknesses. The greatest gift a father can give is to marvel at his son's gift, whatever that gift may be: artistic talent, the art of entering into relationship, the ability to express joy, a capacity for forgiveness. Moving from your own desires for the child to discovering his hidden gifts requires you to work on yourself. How can a father lead his disabled child toward autonomy? Autonomy is one of four educational goals, alongside education in freedom, communication, and self-confidence. Yet we often confuse autonomy with independence—managing life alone. True autonomy is the art of knowing what to ask for and how to obtain the help you need to formulate and carry out your own projects. Education toward autonomy means helping someone discern what he can do alone and what requires the help of others. Parents face great temptations: overprotecting the child, discouraging his bold plans. The father's role is to help his son articulate his desires and assist him in building a life project. Finally, a difficult moment for every father comes when he must know how to step back, after accompanying his child, and let him live his own life. It seems a disabled child's father is expected to be perfect. Perhaps the father's first aim is simply to love his child, help him, and care about his future—especially since disability demands an extra measure of love and attention. The hardest part may be that his son will reveal to the father limits he never knew he had. Disability becomes a revealer of our profound humanity, a path of truth. If the father can humbly acknowledge to his son that he has not always measured up, he gives him an essential gift. Then the son has the possibility of forgiving his father for the moments he caused him pain—this is the ultimate experience of love. In response, the father can say to him: "My child, you have drawn from my heart all the love I never knew I possessed. You are my son, my daughter, so deeply loved"? Cyril Douillet, 2005

Article translated from Ombres et Lumière no. 149