after the birth of 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 honored 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” [no. 92].
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 ae 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 reason 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
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.
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 becomes apparent.
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 for.
A Fundamental Truth
Perhaps this is why so many families of children with disabilities,
despite difficulties, often radiate with 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 our 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.