The beauty of parenting…is that you aren’t given a child with a disability. You are given your child with a disability.(en español)
Our son Charlie* was born with Down syndrome in 2007. Mytraining as a developmental psychologist had focused on the deficits faced by people
with disabilities and how to deal with those challenges. But I soon found that it
was of limited use for understanding my own son. He certainly has challenges
that come with his diagnosis, but they make up only a small part of life with our
wonderful little boy.
Soon after Charlie's birth, a visitor to our home
asked, "So, is he mild, moderate, or severe?" She was referring to his level of
cognitive impairment. I was very familiar with her terminology, but the
question shocked me. In my arms I held my beautiful baby boy, who defied easy
categorization. Clinical labels may describe some aspects of an individual's "functioning,"
but they don't tell the whole story. Labels could not describe how Charlie's
smile lit up a room or how the sweetness of his soul had captured our hearts so
I have since come to understand that clinical
categories also miss another important dimension of personhood: we are created to
be in relationship with others. As Pope Saint John Paul II said in his
encyclical Evangelium Vitae (The Gospel of Life), "Within the family
each member is accepted, respected and honoured precisely because he or she is
a person; and if any family member is in greater need, the care which he or she
receives is all the more intense and attentive."1 Seen
through this more complete lens, Charlie is very "high functioning" within our
He does well because we love him and attend to him out
of that love. We make accommodations to compensate for the challenges that
arise, with the result that his strengths become more apparent. He plays an
integral role in our family's happiness. For example, he is our most empathetic
child—the first one to notice when we are hurt and the first to offer comfort.
People often say, "I could never handle a child with a
disability." The beauty of parenting, I tell them, is that you aren't given a child with a disability. You are given
your child with a disability. Your
child enters the world in a relationship with you, and that relationship changes
everything. You are not called to "handle" a disability. You are called to love
a particular person, and caring for him or her grows out of that love.
I once read an article in which a woman discussed the
reasons for aborting her child with Down syndrome. The deal-breaker for her was
watching a boy with Down syndrome at a restaurant with his mother and father. They
had to hand-feed him a slice of pizza, she said, and wipe his face with a
This hit home for me. We are now weaning my seven-year-old
Charlie off a feeding tube. Although he's making progress, we still spoon-feed
him and often wipe his face afterwards. I wonder how many people have watched
us feeding him in public and decided a life like his isn't worth living. But if
anyone were to ask, I would say, "It might look a little crazy from the
outside, but he's an amazing little boy, and it's a good life."
It's like looking at a stained-glass window from the
outside: The colors look dark, and you can't quite make out the figures. From
the inside, however, with the sun shining through it, the effect can be
brilliant. From inside our family, love illuminates our life with Charlie. What
may seem dreary to others, perhaps even unbearable, is actually filled with
beauty and color. We know, for instance, that Charlie has worked hard to gain
basic feeding skills that most people take for granted, and we are so proud of
his valiant efforts.
Many parents want perfect children. Our culture is
obsessed with perfection—a superficial perfection. Photos are airbrushed, and
social media sites depict seemingly perfect lives. God calls us to seek
perfection, too. He does not call us, however, to perfection of appearance or abilities,
but to perfection in love.
Christians know what perfect love looks like—Jesus offering
himself on the Cross. Love in a family where one member has a serious
disability may look unappealing from the outside. Indeed, love in any family is messy; there are faces to
wipe and sacrifices to make. It's natural to fear that such sacrifices will
require too much. But this is where the deep mystery of sacrificial love
In our family we have found
that our hearts, rather than being weighed down, have become larger. Caring for
Charlie has given us more patience, more compassion, and more love for others—especially
those on the outskirts of society, whom Pope Francis so often calls us to care
Perhaps this is why so many families of children with
disabilities, despite difficulties, often radiate joy. When I meet another
parent of a child with Down syndrome, there is usually a moment of instant recognition
and understanding. Our eyes meet, and we smile conspiratorially, as if we're in
on the same secret.
The secret we share is the fundamental truth of our
existence: every life is a good and perfect gift. Many know this on an
intellectual level, but those who love someone with a disability see it in
their loved one's face in a particular way. Our love for them has nothing to do
with what they can or can't do. We love them simply because of who they are. Understanding this teaches us how
to truly love everyone, whether they have a disability or not. We also begin to
understand our own worth, which depends not on our skills or appearance, but
solely on the fact that we are persons created in the image and likeness of
God. Our lives—all our lives—are worth living.
author has a Ph.D. in developmental psychology and has been advocating since
the birth of her son Charlie* for children who are prenatally diagnosed with
disabilities. She and her husband are the proud parents of five children.
*Name changed for privacy.
1 John Paul II, Evangelium Vitae (The Gospel
of Life) (Washington, DC: United States Catholic Conference, 1995; reprint,
Washington, DC: United States Conference of Catholic Bishops, 2008), no. 92.
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