Ursula: To those dark souls on the Internet

If you have been following us at On The Culture for several weeks, you know that Marybeth and I were both moved to write about a wee red-haired firecracker in Nashville named Pearl Joy Brown. Pearl was born a couple of months ago with some severe health problems, and the story of her determined journey to experience life is one not to be missed.

Pearl still struggles daily and has been given about a year to live. Her health care is expensive, and the family receives help from a state agency to pay bills. The family has also been inundated with an outpouring of generosity – both financial and spiritual – from its local and cyber communities. The Browns have felt enveloped in love even as they feel terror that Pearl will be taken from them at any moment.

My family feels very close to the Browns and Pearl even though we have never met or even spoken on the phone. I have a 6-year-old daughter with Down syndrome. Like the Browns, we were urged to abort our daughter when we learned of her condition in utero. Unlike the Browns, though, we know our daughter likely has many healthy, happy years ahead of her. I am inspired by their faith and ability to live one day at a time.

When I check Eric Brown’s Twitter feed, my eldest daughter (happy for a distraction from her schoolwork) races over to ask, “Is Pearl okay? Can I see her picture again?” I rejoice in showing her the pictures; Pearl, to me, personifies a beauty of God’s — not man’s — creation. 

Many times Pearl’s story has made me cry with either fear for her health during a crisis, or joy at her numerous, miraculous rebounds. At the end of the day, I often give my husband, Matthew, an update.

A few days ago, we were both initially thrilled to see that major media markets were sharing Pearl’s inspirational story. How many people would, like us, be moved and inspired by her story!?

But then we read the online comments by readers.

We were horrified. Sad. Sickened.

But we should have known better, as my husband wrote in a new post for our personal blog:

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.

 

… The miracle of Pearl’s birth and life [has now] 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 …

 

          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 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.

 

 

About Ursula Hennessey

Ursula Hennessey homeschools her 8-year old while her 4-year old lines up his gazillions of cars under the radiator. She also has a new baby and a 6-year old daughter with Down syndrome who is mainstreamed in the local public school. In prior lives, she was a sports journalist and an elementary school teacher. Find her at: http://ninetydeuce.wordpress.com/about-ursula/

24. October 2012 by
Categories: Uncategorized | 4 comments

Comments (4)

  1. These soulless human beings that hide behind the anonymity of the internet would fit in well in WWII Germany.
    Along with the Jews, Hitler deemed anyone in the disabled community not worthy of life, and had them exterminated.
    What does it say about an individual when they agree with Hitler?

  2. With great humility, I ask you to consider another valid experience of this disorder. Sometime in the next 5 weeks, my niece will be born with alobar holoprosencephaly. She is expected to pass quickly, and will be on hospice comfort care from birth. Perhaps she will be like Pearl and defy the odds by living for some weeks or months. I truly, sincerely, deeply, hope not. Reading Pearl’s blog, and the care stories of other children with alobar HPE, I am so wrecked by the severe seizures and necessary addiction to pain medications (whose effectiveness wears off). Knowing that the neuro-pain center may be completely intact, but the emotion-center is unformed informs my prayer for a brief passage through this world for my niece. While I am honored to witness the life of such a unique and special person, I am praying for it to be mercifully short. My faith in the Goodness of God will be borne out by the brevity of her suffering. Please try not to shame away our honest – albeit different – perspective on this experience. It takes courage to approach an open dialogue about something so painful to us: I’m trusting in your ability to be open to honoring an equally valid position. When we can respectfully hear each other, we can elevate these conversations out of politics and into love-centered action planning.

  3. Ursula Hennessey

    I actually agree with you, Jackie! I’m glad you are placing your faith in the goodness of God and that you are praying for mercy and freedom from suffering. That is entirely understandable, and that is, if you DO follow Pearl’s blog, you see time and time again from the Browns. They do NOT pray for Pearl to live a long life. They pray for God’s will to prevail, whatever His will is. In fact, if you have read their words, you see how they will rejoice when Pearl joins God in heaven and they will look forward to the day they are all together. Their story is so remarkable because they are praying daily, hourly for strength to follow His will — that is all. They are not praying for a long life, a short life, any particular kind of life for Pearl — only the strength to be God’s partner in whatever His plan is for her life.

    However, if you read the comments on the mainstream stories, especially on the Daily Mail, you see hundreds of people who criticize the Browns for not aborting Pearl so that others don’t have to pay for her. They call them selfish, blinded by their God and religion. And that is what Matthew and I are reacting to. The Browns are precisely the role models for your family — not because their daughter has lived several weeks, but because they are open to whatever God has in mind and because, like you, they definitely pray for Pearl to find peace, even if that means peace in God’s heaven, and even if it means great sacrifice on their part to play a supporting role in His plan, which is confounding, at times, for them. I urge you to read Eric’s words, going back to their diagnosis. He explains it better. Many prayers for you and your family, Jackie.

  4. Pingback: Pearls before internet commenters (or, a gem on the Godbeat)

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