Monday, April 8, 2013

Far From the Tree

Things that once seemed settled are now thrown into jeopardy. This is how it feels right now to be a woman. Unbelievably I am seeing the dismantling of women’s reproductive rights taking place state-wide across the United States.

Was it last week North Dakota passed an extremely limited abortion bill?

This weekend Kansas did the same. The bill is before the governor and is expected to be signed soon. In addition the bill “spells out in detail what information doctors must provide to patients seeking abortions.” Really? How does that work? At what point did the Republican legislature go to medical school.

I also wrote last year about Wisconsin Republican State Rep. Don “White” Pridemore, who was co-sponsoring a bill with State Sen. Glenn Grothman with language equating single parenting with child abuse, saying that women in even abusive relationships should seek options other than divorce. READ What is in the Cheese these Wisconsin legistators are eating?

I feel we are entering a dark period for women and for women’s voices to be heard. The sound I’m hearing is that of doors slamming shut.

I understand that there are many decisions parents must make these days. It isn’t as easy as it was when I was born or when I was pregnant with my daughter. Moms and Dads today can choose testing to determine birth defects and spot any signs of trouble before the child is born. These tests have been getting better and better at predicting the viability and diagnosing the genetic makeup of a prenatal infant. I cannot imagine how painful it must be to get bad news and how hard the decision must be for these parents.

I’ve read memoirs by parents with special needs children and they are heartbreaking and all-consuming in their love and attention. Emily Rapp, has eloquently written about her young son born with Tay-Sachs disease in The Still Point of the Turning World. Her son Ronan recently passed away. My friend Rebecca Hill blogs about her family, especially how they deal with Jude and his array of health complications. She manages to by angry and funny at the same time.

All this to say: it’s scary.

I started reading a five-hundred page book this weekend. And am halfway through it. Far From the Tree by Andrew Solomon, a psychologist that has studied issues of identity. The book is about caring for children that are nothing like the parents. Straight parents dealing with a gay or transgendered child or happy, expectant parents facing the birth of a disfigured or mentally disabled child. The stories in the book are like a car wreck—I can’t help but keep reading even as I am sad and sorry for this world of woe. Solomon as a psychologist doesn’t try to offer solutions or tips on childrearing. What he’s done is present cases, in many of the examples the parent’s involvement has been heroic, but also where physically and emotionally there is nothing more they can do to “change” the child. He also argues if the person needs to be changed. Does every deaf child need cochlear implants? What happens to deaf culture if all newborns receive intervention? These are ethical questions.

If you could make your child “normal” would you?

Well that begs the question of what’s normal and what’s not. Of course the parents love their son/daughter, but not all the heartache that has come bundled up with them—except some of the parents interviewed admit that they are better people because of their experiences. Most would not change a thing about their loved one.

What if your child is nothing like you?

Throughout the book, without being preachy, Solomon acknowledges that these parents had choices. Some were counseled to abort, or at birth to give away their “mongoloid” or imperfect child, some were judged for continuing to persist with treatment or advocate for rights or funds—all the expense!

And, of course, for many of the parents there wasn’t any pay back. Their son or daughter didn’t get better, crack the autistic code or emerge, or stop biting or hitting or smearing feces. Some told stories of placing the child out, finding a residential home better suited to their child or young adult. All of them accepted the consequences of their decision.

That’s where I’m at halfway through—and it isn’t a cheery read. The parents interviewed for the book, whether wealthy or poor, in the city or from West Virginia, the Jae Davises of Lancaster, PA, they all took what came their way, buckled down, and did what had to be done. They got their kids schools, they got their kids treatment (whenever possible, just finished schizophrenia chapter, and that was pretty depressing), they gave their kids a start.

Far From the Tree though is ultimately about identity. That they are not their kids and their kids many not be them. And, ultimately, the moral is no matter if we see our self in our offspring or can relate to the “other” in him/her/intersex we are still required to help them or find them help. The parents interviewed are not saints. “At one point, the affectionate mother of two autistic teen-agers confesses, ‘My husband will sometimes say, ‘Would you marry me again?’ I say, Yeah, but not with the kids. Had we known what we know now, we wouldn’t have done it.’ ” Or this “we meet Julia, who went into sudden, violent labor with her second child at thirty-eight weeks. The baby, Imogen, was born amid the blood of a hemorrhaging placenta, and survived owing to the hospital’s ministrations. As she grew, though, she screamed in constant torment. Julia’s partner suggested that they suffocate Imogen to spare everyone pain. Julia refused, but had similar thoughts. A brain scan revealed that Imogen had lost her cerebral cortex, where intelligence resides. Finally, the couple surrendered her to the adoption services. ‘I’m not the right mother for this child,’ Julia explained.

Back to where I started this blog: these are hard decisions—and best left to Mom and Dad to make, not the state legislature. God help us.

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