Parenting a child with a disability has its challenges, but also great rewards.A man and a woman get together and decide to start a family. Then one day, they have a child different than they expected. The news falls like a silent bomb, destroying the ideal life the couple had imagined. The family faces an unknown situation that will transform their lives.
Mourning the “ideal” child
Cory was born with trisomy 21. Victoria suffered a stroke (cerebrovascular accident) at 17. Madeleine became multi-handicapped at the age of 5. In each example, the parents describe this ordeal as “painful,” “terrifying,” even “insurmountable.” Such stress on a couple can lead to abandoning their marriage, or to separation. Some can wonder if God has inflicted this trial on them. We must not stop answering them that God loves them. And help them to accept His love through the gifts of their child. Anne cried out “why me?” when she discovered that Madeleine will never be able to speak to her again. But in her journey of faith, this “why” has transformed into “what for?”– a journey that has led her from the shadows to the light.
After the shock comes the process of mourning the loss of the “ideal” child, or the child you knew. Very often, feelings of powerlessness, injustice, and guilt follow and can be overwhelming. Daily life is also very tiring. One may need to fight against or with institutions or experts. Some may travel far to find a revolutionary method that will help their child make progress.
Parents must also face the opinion of others, which may seem accusing, mocking, or pitying. There can be the feeling of failure if the child no longer progresses. In some cases, in some cultures, there can even be a feeling of shame for not “making a normal child,” notes Priscilla Werba, a speech therapist specializing in disability, recalling that “in the majority of cases, the disability is genetic.”
Each parent is thus confronted with his or her limits. Many will grow through it. Parents who have gone through this ordeal have an extraordinary maturity. Some find a strength that is beyond them: the gift of acceptance, of deferring to God, of trusting Him. This gift can be received at the beginning, or it can be found in the course of hardships, when human strength is no longer sufficient.
This is the case for Anne who, at the beginning, wanted God to take back her child. During a pilgrimage, her suffering stopped. She placed Madeleine at the foot of the Cross. “All of a sudden, the Holy Spirit wrapped me in his peace. I arrived with a problem, I left with a child. God knocked loudly: Madeleine’s disability transfigured our lives. Our daughter is no longer ‘handicapped,’ she is Madeleine. She has her role on Earth like each one of us. I no longer need to speak to her, we are in eternal communion.”
The “mourning” ends when the family accepts the limits of its “different” child, loves him or her as they are, and begins to rejoice at the gifts and wonders they bring.
Siblings must also adapt
Parents are not the only ones affected. Shame and jealousy are frequent feelings in siblings. The differences can shake up the household, especially when the disabled person has behavioral problems. The child with a disability requires more time, listening, and attention from the parents. The other children need to be more responsible, more autonomous. For the little ones, it is not easy to grow up when their sibling is handicapped and constrained by their limitations.
However, for Priscilla Werba, “the bigger the siblings are, the easier the mourning process becomes.” It brings gentleness, love and kindness. The children will seek each other out and take over. Sybille says: “One of Victoria’s brothers empathizes with her, as if he felt her sadness, her frustrations.”
In contact with disability, siblings shift away from their natural egocentricity. It is very enriching to be confronted with difference. This is what torments Marie, who never lived with her brother Jack, who was sent to live at an institution at a very young age: “Looking back, I feel a real lack; perhaps his daily presence would have helped us mature.”
Support is essential
Families also need help. In theory, children with disabilities can be integrated into the school system, but it can be complicated depending on where you live. Not all children are suitable for a regular classroom; some may need special education. The majority of children with disabilities need external supports as well.
Spiritual support is essential. The involvement of family and friends through prayer and a loving presence was essential for Victoria’s family when she was in a coma after her stroke. Today, about 100 people meet every two years on a pilgrimage to give thanks for her life. Many Christian organizations offer meetings, group therapy sessions — an opportunity to settle down, to share an often stressful daily life with people in the same situation, and to find support from experts.
When Anne wondered if it was really worthwhile taking her daughter to Christian gatherings, a priest replied: “People with disabilities have an essential role in the Church. It is essential that they take part in the Body of Christ.” When she asked about communion for Madeleine, another priest told her: “She is much more mature than your other children. This is her only nourishment, you cannot refuse her.” Madeleine also receives the sacrament of reconciliation, Anne confided: “She is not an angel, she is a human being.”
Accept that the child has another kind of adult life
The greatest difficulty often comes when the child grows up or the father dies. A mother may become emotionally dependent on a disabled child, and separation can be difficult. However, some disabled children must leave the nest. Conversely, we should also be honest with disabled people, helping them understand that their parents, like themselves, will die one day.
Some associations may be able to offer the disabled adult a new place to live, where he or she can develop their talents and offer them to others. Parents must accept that their child has another form of adult life, which requires a real letting go. It is a path that is often painful, but full of joys, victories, and above all, beautiful encounters. What first has to change is the way we look at things. People who are “different” have real gifts that are meant to transform the lives of those around them.
Marie-Allys Ducellier
