Truth ache

My six-year-old daughter has Down syndrome. When friends ask, “How is Magdalena?” I wonder if I should tell the truth.

She is actually very healthy and happy, but parenting her is difficult. And saying so might embolden those who think that it’s understandable, perhaps even preferable, to abort babies with disabilities.

Do I share the details of how we finally solved her chronic constipation? Or tell about her compulsive hair-pulling and shoe-throwing? Or explain how conversations with parents at her school start with apologies for her behavior?

Half of my dearest friends are pro-life Catholics (like me), and half are pro-choice secularists. Among the latter, some are not just secular, but anti-religion. A few have also told me they would have aborted a Down syndrome baby.

We agree to disagree—and not discuss—some issues.

Despite our differences, these truly are beloved friends. I cherish our heart-to-hearts. God knows all of us have our parenting tales of defeat and embarrassment, with or without a special needs child.

But every once in a while I wonder whether a confidant will take my griping the wrong way and generalize about my experience.

Do my complaints confirm suspicions that a special needs child is a burden? Will my words somehow find their way to a woman who’s just received an in utero diagnosis?

“…I know someone who has a really tough time of it. She fears for the future. They never go out; they can’t trust a babysitter…”

Will what I’ve said indirectly lead to an abortion?

The larger truth is that Magdalena strengthened our family and gave us true joy. She forged in our other children something special and profound. Yes, it’s hard, but she makes our world go round.

To my anti-religious, pro-choice friends, this might sound like BS shined up with hollow, Christian buzzwords. I know saying she’s a gift from God makes their eyes roll.

Sure, everyone vents about their kids. But babies with Down syndrome are aborted in high numbers, in part because of the perception that it is hard to raise them.

So when I complain, I think the stakes are higher. I feel a responsibility to be extra careful about the impressions I leave.

From Family Events.

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Comments

  1. I can so identify with this, Ursula! I feel this way when he acts out “stereotypically” in public; I fear it reinforces out of date notions and I get so angry at myself for feeling this way, but can’t help it. The bottom line is, all kids have challenges, some are more severe than others, and our kids with DS happen to be part of a small group whose potential challenges show up in a pre-natal test. It’s unfortunate, because Down syndrome has become a bogeyman when really it’s no more or less complex than other disabilities that don’t show up on tests. That’s why we all need a good support system of friends who won’t take our griping the wrong way!

  2. Ursula Reel Hennessey says:

    Thanks so much for your comment, Vicki! You know, these thoughts have been kicking around in my head for years, but it was your most recent post which included something I really related to — the part about how you’ll never finish a conversation with anyone, ever — that pushed me to think more and more deeply about this. I used to be a good listener and a decent conversationalist, but now I’m neither! I’m always looking past people to make sure M isn’t yanking the tablecloth off the table or trying to hold her hand tightly as she squirmed and growls. This is the public face of M and me … but not who we are. So hard to show, or prove, we are so much more. Anyway, hugs to you and the gang.

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