When the World Comments On Your Life

I've found myself in the center of a squall this past week. A squall of my own making. When I wrote about my choice not to screen the baby in my womb for Down syndrome, I didn't expect it to draw any attention other than readers of this blog. But Lisa Belkin, of the New York Times' Motherlode, was willing to post it, and just a few more people read her blog than mine. So far, there are 180 comments and counting. And then there was the second post, "Is it Harder to Have a Child With Down Syndrome?", published Tuesday, which has brought with it a comment stream of its own.

While many of the comments have been incredibly encouraging, supportive, wonderful testimonies to life with disabilities or life in general, I'm focusing for the purposes of this post on the other side. Here's a sampling from the first post:

"I'm tired of people painting crippling disabilities in a rosy light, claiming that it's all the same and just another way of being. Choosing to bring a child into the world, knowing that s/he will be doomed for life with such a condition, isn't something that every woman is ready to do, or should be obliged to do." (#11)

"But I think deliberately choosing to bring a child into the world knowing that they will never live a full, independent, healthy life is strange and selfish in a way." (#52)

"The bottom line is that Down's Syndrome children are also a burden to society." (#73)

"It's bizarre to me to see statements that these children enrich their parents lives or bring joy, but luckily we all get to choose." (#78)

"The ones who suffer? The SMART kids. Only a deeply self-destructive society dumps all of its resources into a population that, frankly, isn't going to show a return on the investment." (#96)

From the second post:

"Yes, some disabled kids live in blissful ignorance and enjoy the dance classes of life. But others suffer with the knowledge and the despair. Which kind you're gonna get, nobody knows, but I'm not willing to take the risk." (#3)

"Unfortunately, the real challenge may come when the child grows up. Raising a Down's child is nothing compared to managing a Down's adult." (#24)

"What we have a difficult time understanding is when a person has FORESIGHT into a situation, particularly concerning disability and prenatal screening, why someone would CHOOSE to have a child that has a disability like Down Syndrome, when we KNOW the hardships (for everyone) that are involved." (#85)

And these are just the ones that lend themselves to quick quotations.

A number of you have asked me how I feel about all this. Not just how I think about it, but how I feel about it.

I wasn't feeling very emotionally engaged until Sunday morning. But then I found myself sitting in church next to Penny. She had taken a Bible from the chair in front of her and opened it on her lap. Her fingers were tracing the words and she was "reading" (which means she was narrating the page as if she knew what the words said). And as I saw her there–with her soft brown hair cradling her face, her glasses slipping to the end of her nose, her long eyelashes–absorbing some sense of God's love for her, all I could think was, There are people in this world who think you shouldn't exist. Like an arrow to my heart.

So, the comments sting. The ignorant ones provoke anger. The stories of family members of people with disabilities who say they think their sibling/child/mother/etc. should never have existed provoke sorrow and confusion and compassion. The mean ones make me want to protect my daughter and never write a word about her again. But my overriding sense in the midst of it all is of gratitude. When I write on this blog, or at Bloom (a blog specifically for parents of kids with disabilities), I'm writing to a pretty sympathetic audience. So the opportunity to write for people who think my life makes no sense whatsoever, well, really, it's a privilege.

I've shed some tears this week. I've endured some sleepless nights. I've hugged Penny tight and kissed her head and wished that everyone in the world had a chance to meet her. And I plan to keep telling her story, in spite of the hurt and the anger and the sadness, in hopes that hers might be a narrative of love and hope and embracing the fragility, complexity, and beauty that every human life has to offer.

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