The Internet is no place to raise a family

I’ve never met Eric and Ruth Brown, but I want to share their story with you, for this family’s extraordinary witness to life, and their humble trust in a loving God, has inspired in me a new commitment to being the best husband and father I can possibly be.

The Browns live in Nashville, TN, a city I think I may have driven through once on my way from one place to another. I came to know them in the way that folks meet each other these days—through social media. My wife and I frequently write about raising our daughter Magdalena, who has Down syndrome. Believe it or not, we get a lot of blowback. Something about the online intersection of disability, healthcare, and anonymity brings out the worst in the people. I know I am not the first to point this out.

Two political phenomena of recent years have done more than any to stoke this brutalization of our discourse: Sarah Palin’s appearance on the scene in 2008 and the Obamacare debate of 2009–10. Each in its own way gave symbolic weight to a particular political worldview. Each in its own way gave folks license to be incredibly rude to one another in the name of the free exchange of ideas. Sarah Palin drove liberals batty, Obamacare made conservatives insane. The stakes were so high, neither side thought it necessary to maintain even the façade of common decency. At least not online.

Because of the stories we write about Magdalena’s challenges and, especially, because of our vocal condemnation of the gathering tendency to try to quantify the value of our daughter’s life—and, indeed, all human life—in coldly utilitarian terms, my wife and I have frequently been on the receiving end of hateful and ill-informed online comments. It can be very difficult to take as it often feels as if these barbs are aimed straight at the center of the family you’d die to protect.

Don’t get me wrong, we don’t see ourselves as victims. We give as good as we get. But we don’t go looking for these battles. Usually, they come to us.

The upside of all this, however, is that lots of people send us stories to read about other families that are dealing with situations similar to ours. One such story, which came via Facebook, was the Browns’.

Eric and Ruth were already parents to two children when, earlier this year, they discovered that Ruth was pregnant. All went well until Ruth’s regularly scheduled 20-week checkup. This meeting didn’t go as planned. Doctors told the Browns that their baby had a rare neural disorder, alobar holoprosencephaly (HPE), in which the fetal brain fails to develop into two hemispheres. Most babies diagnosed with HPE die before they are born. Doctors told the Browns that the condition was “not compatible with life” and urged them to induce labor right then and there.

This is to say, they urged the Browns to kill their baby right then and there. The Browns, to their credit, said “no” to the doctors. Instead, they said “yes” to life.

I could stop now. This story gets better, but this is the part that, for me, is the most compelling and uplifting. For we, too, had been given an in utero diagnosis of Magdalena’s condition. We, too, felt as if we had been suddenly plunged into strange and turbulent waters. We, too, had been urged by people we trusted to abort her—to, in their words, “terminate” the pregnancy. I guess they thought we’d be content to just start over. I guess those people thought we could take a mulligan.

The Browns spent the second half of Ruth’s pregnancy preparing to be told that their daughter, whom they named Pearl Joy, had died in the womb. Even if she did survive until birth, the Browns were expecting to have to say goodbye to their precious gift almost as soon as they said hello. It was a grim time, full of questions without easy answers.

But the Browns never lost faith. They asked for the prayers of friends and family. They accepted the prayers of strangers like me and my wife. And they placed their trust in God’s plan and waited for His direction, whatever that turned out to be.

That trust, ultimately, was rewarded. Pearl was born on July 27, 2012, weighing just 4 lbs. 3 oz.

And guess what—she lived. She didn’t die. She lived, and she lives to this day. She has some difficult challenges, to be sure; she has seizures and must be fed through a tube. But she’s alive and the gift of her life has radiated far beyond the Browns’ modest home.

Now to the bit that makes me mad.

The miracle of Pearl’s birth and life attracted the attention of the media. As her story reached an ever broader audience, the inevitable happened: It brought out the Internet lowlifes. A recent front-page story in the Nashville Tennessean was picked up by both USA Today and the U.K.’s Daily Mail. The story mentioned that Pearl’s care is being paid for by TennCare, Tennessee’s Medicaid program. Eric Brown estimates that the cost of Pearl’s care has already reached $1 million. Doctors now give her about a year to live.

The resulting nastiness in the form of comments on the stories was entirely predictable:

They should have aborted that baby.

What a selfish family, blinded by their stupid religion.

How could they justify bringing a severely disabled child into the world?

What kind of quality of life will that baby have?

She will only ever be a drain on the public purse.

That money would be better spent elsewhere.

Watching this unfold has been painful to me not just because of my prior experience writing about Magdalena and having to read ignorant and insensitive remarks about my daughter, but because, unlike me and unlike my wife, the Browns didn’t ask for this. They aren’t writers. They aren’t culture warriors. They are just a regular family. They are just good people who listened to their hearts and said “yes” to life.

And look what they got for it. Everyone with an Internet connection is a medical ethicist now.

Though the Browns, in their own words, are not interested in politics, the sad fact is that politics is interested in them. The choice they have made to bring Pearl into the world is viewed universally in our culture as a political act. It shouldn’t be so, but it is. Now, to their chagrin, these unassuming people find powerful cultural and political forces bearing down on them. Anonymous hordes of angry Internet commenters demand to know:

Who do you think you are asking society to sanction your irrational decisions?

How dare you bring out the worst in us by forcing us to confront the living reality of your “imperfect” child?

Well I have some questions of my own.

Do we really want to end up the kind of culture that puts a dollar value on human life? Is that how we define compassion? Do we really want to start judging the worth of our fellow citizens based on the net contribution in financial terms that they make to society? Is that what we mean when we talk about taking care of the less fortunate?

We are all, to one degree or another, broken down, busted up, imperfect, bodies. We are all of us incompletely formed. So count your blessings and leave these people alone. If you must offer your opinion, wish them well and be on your way. Keep your ugly inhumanity to yourself. You’ll feel better, I promise.

I wish the Browns peace during this period of unwanted scrutiny. I wish them comfort during this time of turmoil. We will all one day be as helpless as Pearl Joy. To be born when she was, and into the care of such giving and faithful parents, well…

…we should all be so lucky.

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Comments

  1. Reblogged this on Family Pastor and commented:
    Matthew Hennessey did an excellant job writing this piece!

  2. Amen. It is a slippery slope society is beginning to descend.

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