Is There Ever a “Wrongful Life”?
He did make it to birth, but without his feeding tubes and
constant supply of oxygen, he was still in danger of dying. Matt and Ginny took
shifts so that one person could sleep at night while the other kept watch over
Eliot. Even with such dedicated attention, his life remained incredibly
fragile.
You see, Eliot had a genetic disorder called Trisomy 18. Only half the children who have this disease are born alive, due to “heart
abnormalities, kidney malformations, and other internal organ disorders.”
The story of what happened after Eliot’s birth
is beautifully captured in what is probably my favorite YouTube video of all
time: 99 Balloons, by Igniter Media.
It is a poignant and life affirming story. You can watch the six minute film
below.
Okay, don’t ignore the video and keep reading.
Seriously. The rest of the blog post won’t make nearly as much sense.
Watched the video? Good. Now, note Matt and Ginny’s eager
anticipation of Eliot’s arrival, even after learning about his disorder. They
thought the day of his birth “couldn’t come sooner,” so great was their
excitement. When Eliot was born, they (rightly) considered it a miracle.
Caring for Eliot obviously wasn’t easy. His life literally
depended on constant, unending, 24/7 attention. I can’t imagine Shannon and me
never being able to sleep at the same time because of a frail son’s (or
daughter’s) desperate needs. And yet that is exactly what the Mooneys did for their
son.
But notice how they weren’t begrudging caretakers. They
didn’t bemoan their lack of normalcy. No, they loved learning how to best provide for Eliot. Amazingly, Matt
described his late night shift as the best part of his day. The best part!
One thing that sticks out to me the more I watch this video
is how much joy Matt and Ginny had in their son. This is expressed throughout
the film in phrases like, “You continue to find new ways to steal our hearts,”
and “Your mom and I are so thankful we know you.” They saw their son as a gift, and
they treated that gift with a selfless, affectionate love that puts a lot of us
to shame. Matt and Ginny were happier with Eliot than they were without him.
You may look at the end of the story and see it as a
tragedy. But according to Matt, 99
Balloons tells a story about God “revealing Himself through a child who
never uttered a word.” That’s often how God reveals Himself: through the
gritty, unassuming aspects of daily life—through the moments of suffering we
experience when the world isn’t watching.
Unfortunately, not all parents are like the Mooneys. Unfortunately,
many of us don’t like it when God reveals Himself to use through our pain. We
love our comfort and ease. We love our imagined notions of freedom.
That’s one reason, I think, why our society often views genetically
defective children as unworthy of birth, let alone life. Heck, it’s one reason
why even healthy children are often
viewed as a burden and not a blessing. We place too much importance on our autonomy.
Even pro-lifers such as myself can be tempted to think this way at times.
The problem isn’t with the children—born or unborn, healthy
or diseased. The problem is with us. In order to overcome our society’s double standards, we need more parents like Matt and Ginny. We need more people
who recognize and embrace the freeing power of self-forgetfulness. And only God’s selfless love can reorient how
a self-centered culture treats those whom it considers burdensome and expendable.
May we all grow to see the inherent dignity in every life—including the short
and frail life of someone like Eliot Mooney.
photo credit (which, to be clear, is of a baby other than Eliot; I didn’t have any rights to his pictures): downing.amanda via photopin cc
photo credit (which, to be clear, is of a baby other than Eliot; I didn’t have any rights to his pictures): downing.amanda via photopin cc