Wednesday, May 16, 2012

The value of a life

Up until yesterday, I had never, ever heard a woman--a mother-- state that she wished she had aborted a child to whom she had already given birth. I honestly thought I never would. What's the saying? "You never regret the kids you have, only the ones you didn't have." I guess I was naive enough to believe that the act of holding, kissing, soothing a child was enough to erase the doubts and plant a seed of love and yes, even gratitude. 

But I was wrong. There actually are people in this world for whom the act of being entrusted with a life -- no matter how small or fragile-- brings nothing but anger, hostility, and in the end, bitterness.

Driving to Seattle Children's Hospital yesterday morning, I heard a story on NPR about bills being considered in several states that would ban "wrongful birth" lawsuits. The upshot is that parents rely on testing --sometimes routine, sometimes extensive--to determine the health and well-being of their unborn baby. When that testing isn't offered, when the results aren't conclusive, or when the information somehow gets lost in translation, a select few parents have decided that the "negative outcome" (i.e., a baby with issues they weren't expecting) is worth suing over.

Clearly, all of this is wrapped in an untidy package with abortion laws. Because really, what people are saying here is that they want to know what might be wrong with their baby "so that, you know, we can, ummm .... well, we can decide if we can .... you know ... we can look at how it would impact our family and ... well, you know...."

Yeah, we know. But you wouldn't say it, right? Because even the most abortion-rights people I know have never looked me in the eye and said, "Oh, I'd want to know. Because I would abort that baby in an instant."

At the core, we're still PC about it, even if deep down, we suspect that learning about a baby with a catastrophic disability or an abbreviated life span would rock us to the core and bring us to the place where we'd ask ourselves: Can I do this?

But apparently, not everyone wrestles with life and its inherent value. Some people have it all figured out. And those with little more capacity than breath and involuntary motion, well ... they're not fit to consume resources--or tax my emotional ones. Because really, that's what it's all about, isn't it? What we can handle. What we can allow. What we can make room for in our already crowded lives.

The waiting area for the specialty clinics at Seattle Children's is a hive of activity. Children in wheelchairs, children in walkers, children with cochlear implants, children missing limbs, children unable to breathe without assistance, children unable to walk to happy to crawl from one area to the next, even if it means dragging a leg that refuses to cooperate. There are stunned mothers of newborns huddled in corners and drinking it all in while praying that the test they're about to sit through never, ever brings them back here again. There are old hands who seem to know everyone. There are moms who are so accustomed to the wails of an autistic child that they can soothe their son or daughter and still carry on a conversation. 

There, in our usual corner by the yellow door, Oliver and I examined the gears mounted on the wall and experimented with turning them left, then right, then left again. A few minutes into our wait, a mother pushed an oversized, bulky wheelchair into our corner. 

"Can we share the gears with you?" she asked with a sweet southern accent, and Oli and I scooted over a bit to make viewing room for the girl carefully tucked into the chair. Her hair was black and cut short to make it easier to clean certain ports in the back of her skull. Her chin was twisted into a permanent, slightly askew grin. And her eyes were a dazzling, bright shade of green.

Within moments, the mother and I were talking neurodevelopment, while Oli continued to spin gears faster, faster, faster. A few moments later, as we were bonding over the value of therapy that focuses on processing rather than mechanics, we heard a laugh. It was a sweet, melodious child's laugh--the kind that you imagine when you think of little girls and baskets full of puppies. It was coming from my new friend's daughter.

"Oh, she likes you, Oliver! You are making her happy!" the woman beamed.

Oli beamed right back. Oli knows "happy." He drew his forefingers to the corners of his mouth and made a huge, exaggerated grin. 

"He happy? Me? Me make him happy?" he asked. (Everyone is a "he" in Oli's world.)

"Yes! You're making her so happy!" I encouraged. 

Oli was delighted, and took this little girl's happiness on as his very own task. He threw himself into spinning gears, tickling her arm, and making daring pratfalls in the little enclosed space we four occupied. We moms kept talking. She shared about straining her back muscles lifting her sweet, immobile girl. About the fear that comes every time seizure meds have to be tinkered with. About how her younger kids decorated their big sister's wheelchair for her recent 10th birthday. I told her about Oli falling behind his younger brother, about his newfound skill of drawing lollipop people, about how there's so much that we just don't know.

When our beeper summoned us to our door, it was time to go. I thanked my friend for a beautiful chat, and encouraged Oli to tell his new friend goodbye. 

"I kiss him?" Oli asked. With permission, I hoisted him onto my hip so that he could place a very careful peck on one smooth, white cheek. The little girl laughed again, and so did Oli. 

As I got ready to walk away, I thanked God for reaching down. A warm peace had descended on me the moment that the woman and her daughter came to our little corner of the waiting area and had replaced the coldness I had felt listening to another woman, another mother of a profoundly disabled child, describe how she wished she had aborted her child before he had been born.

I don't know the pain of giving birth to a child whose life will be measured in medical procedures and pain. I don't know what it costs to stay up all night for weeks on end, to live in a hospital for months, to hear things like, "It's the best we can do." I don't imagine that it's easy, or comfortable, or that it is on par with the kind of minor difficulties I've seen in my life. All I have is right here in front of me--the path of a woman who blundered into special needs parenting by falling in love with a little boy who needed a Momma. But I can say this: even on the worst days, even on the days that bring me to my knees with frustration, even when I consider a future so full of uncertainty, I never wish that my son had never been born. I never think of him as too much, or too little. Instead, I think of the line Julia Roberts' character uses in one of my favorite movies, Steel Magnolias I would rather have thirty minutes of wonderful than a lifetime of nothing special. 

But that's just me.


Fatcat said...

I was horrified at the wrongful birth suit as well.

Well said.

Steve said...

Mary Grace, I just discovered you this morning. I'm a Christian, adoptive father of four (a package deal) who, with my wife, have decided that given their history, their present needs and their potential, our gang would best be served by individualized learning at home. I appreciate your honest writing style and encourage you to keep blogging.

Tiffany said...

Missing you, and hoping all of your family is well.

Becky said...

We pray for your family and hope all is well.

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I hope you blog again soon. I'd like to hear from you.

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