Soon after the birthof my son Charlie*, who has Down syndrome, a visitor asked whether he was "mild,
moderate, or severe"—referring to his level of cognitive impairment. I knew the
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 completely.Relationship Changes Everything
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
Charlie does well
because we love him and attend to him out of that love. We make accommodations
to compensate for the challenges that arise, and 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 to notice and offer comfort when we are hurt.
People often say,
"I could never handle a child with a disability." But the beauty of parenting 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 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. The
challenges that come with his diagnosis make up only a small part of life with our
wonderful little boy.
I once read an article
in which a woman discussed the reasons for aborting her child with Down
syndrome. The deal-breaker was watching a boy with Down syndrome at a
restaurant with his parents: they had to hand-feed him a slice of pizza and
wipe his face with a napkin.
love for our children has nothing to do with their abilities. We love them
simply because of who they are.
This hit home for me. We weaned Charlie
off a feeding tube when he was seven, spoon-feeding him and often wiping his
face afterwards. I wonder how many people saw us and decided a life like his isn't
worth living. Had anyone asked, I would have said, "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 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, and our culture is obsessed with superficial perfection.
Photos are airbrushed, and social media depicts seemingly perfect lives. However,
God calls us to seek perfection not in appearance or abilities, but in love.
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 becomes apparent.
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 for.
A Fundamental Truth
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 fundamental
truth that 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 our children has
nothing to do with their abilities. We love them simply because of who they are, and understanding this teaches us
how to truly love everyone. We also begin to understand our own worth, which
depends not on our skills or appearance, but solely on the fact that we are
created in the image and likeness of God and loved by Him. Our lives—all our lives—are worth living.
changed for privacy. The 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.
 Pope St. John Paul II, Evangelium vitae (The Gospel of Life) (Vatican City: Libreria Editrice Vaticana,
1995), no. 92.
Excerpt from Evangelium vitae © 1995,
Libreria Editrice Vaticana, Vatican City. Used with permission. All rights
reserved. Copyright © 2018, United States Conference of Catholic Bishops,
Washington, D.C. All rights reserved.