Viral Tragedy: What Does it Mean to Like (or mic) God's More Questionable Gifts?

I was right there with the other feminists (and more) to slam Richard Mourdock when he said pregnancy from rape could be a gift from God. Back in hardcopy-only days, I published a newspaper op-ed about the potential for happy life for a developmentally disabled child. But once I pick up on an internet story of parents who chose not to abort a fatally damaged fetus, called the disorder "God's will," and yet allowed their state to pay a million-dollar medical bill for the baby's first 11 weeks of life, my footing is everything but sure.

I could share the story of Pearl Joy Brown in my social networks, and even add a comment about my ambivalence, but what would I be asking of my reading friends? If they clicked "Like," would it mean they approved of every medical decision and theological statement, or more that they liked my quibbling with parents facing such trauma? And of course, I would totally lose control as I helped the story go viral, being shared again, most likely without my cover notes. Anyway, I could have only the most remote dog in that race. The Browns' difficulties are really neither my business, nor that of my social-networking contacts, with the possible exception of Tennessee taxpayers. 

Some of the fine points of the story do affect me, so let's take apart the pieces:

According to Religion News Service, Eric and Ruth Brown found out by sonogram six months ago that the fetus Ruth was carrying had alobar holoprosencephaly — her brain had failed to divide into two hemispheres as required to develop to sustain life outside the womb. They did not take medical advice to abort, but understood that the baby was likely to die before being delivered, and if it lived that long, to die in delivery. The RNS story published by HuffPo does not say whether they took any extraordinary measures to prevent the baby's death. I can't imagine such a wait, but can only applaud the courage it would require.

Eric Brown is quoted as saying "'God has designed Pearl the way he wanted, for his glory and our good.'" I say Eric Brown needs a better pastor. In fact, the Browns' pastor of about a year, Jim Thomas of the nondenominational Village Chapel, is a little more weasely about God's sovereignty:  It "doesn't mean that the Browns know why Pearl is sick, but it reminds them that they are not alone." Not alone isn't nearly enough from a "sovereign" God in a situation like the Browns'. Why on earth would anyone want a God who would want a baby to be so disabled?
The story gives no details of Pearl's delivery or how long and under what level of care she was kept in the hospital, other than that $1million estimated cost, including five return hospitalizations. It does say that she's at home, housed in the family's living room, with IV, tube feeding, and oxygen on hand "in case of emergency." She has seizures every day and could die of a common cold. Nothing is said about plans for surgery to repair her badly unfused upper lip. Nothing is said about the effect on her 3- and 5-year-old siblings of their parents' understandable but extraordinary preoccupation with their baby sister. I want to know how they decide when to give up the "fight," not administer oxygen, not rush her back to the hospital. I'm afraid the Browns have backed themselves and their sovereign God into a corner, and I'm sorry for all of them.

I've seen these issues up close and personal where there's a longer span between birth and death. Ninety-year-olds with "living wills" who nevertheless call the paramedics at every shortness of breath, however expected, and knowing full well they will again be rushed to the hospital, intubated, and sent home to wait again.

Vanderbilt University medical ethicist Elizabeth Heitman is cited by RNS/HuffPo as speaking to the problem for parents such as the Browns of mourning the healthy child they did not have while making the life they can with the child who was born to them. I agree that it makes a terrible dilemma, and I celebrate the Browns' ability to affirm, "death is not the end of Pearl's life." I do wonder a bit whether it's selfish or insecure to want more time to interact with Pearl directly, and unfair to blame the difficulties of that interaction — for her and all those around her — on God. I'm awfully glad I don't have to make the decisions the Browns do. I wish we on the internet could leave them alone with their decisions, so they wouldn't have to rationalize something that cannot be made sensible.