Q&A: Would it have made me a better person?

Posted on Posted in Omphalocele, Opinion, Q&A, Stories, Trisomy 21 (Down syndrome)

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QUESTION

Would it have made me a better person
What if I had continued the pregnancy? Would my living children grow to become stronger, gentler people?

I terminated my pregnancy following a poor prenatal diagnosis of omphalocele. Recently, I read a memoir called Expecting Adam by Marsha Beckthe mother of a child with Down syndrome who learned of his condition prenatally and chose to continue her pregnancy. It’s making me wonder if a better person would make a different choice than I did.

After reading it, I’ve started to second-guess my decision. What if we’d been more willing to change our priorities? If we’d readjusted our life goals? What if I had continued the pregnancy? Would my living children grow to become stronger, gentler people if they had a disabled sibling to look after?

Would having a disabled child transform me and the rest of my family into better people?

ANSWER

I am so sorry about your loss and that you find yourself questioning your decisions. Your question is a really good one and something that comes up occasionally in our private support group.

I’ve read the book that seems to have touched off your crisis of confidence. The first thing to understand about Expecting Adam is that the author took a great deal of poetic license in order to romanticize and fictionalize her story. That makes for entertaining reading, but is not a road map to self-improvement, morality or effective child rearing. The book give a lot of ink to tales of “angels” and “puppeteers” whom the author claims were with her almost constantly from the moment she learned she was pregnant. These mystical beings conveniently present the author with unmistakable signs every step of the way. As I read it, it struck me that if we all had such clear-cut guidance exhorting us to continue the pregnancy, as Marsha Beck claims she did, our decisions would have been as simple and obvious as she claims hers was.

The reality is, whether any event or circumstance will make you a better person is never a forgone conclusion. The only thing that can improve us as people is how we mindfully and deliberately deal with our circumstances. We could list all the ways we think that ending a wanted pregnancy following a poor prenatal diagnosis makes us better people, but likewise if we continued with these pregnancies we could do the same. What I would never recommend is using our own self-improvement (or that of our other children) to justify the suffering of a child.

As to your question “Would a better person have made a different choice?” the answer is simply … no. The choice does not reflect one way or another on the character of the chooser. Having been stalked online for years by the bitter, mentally unstable parent of a child with a disability—a parent who learned of the condition prenatally and elected to carry the pregnancy full term—I’m pretty sure that “better people” don’t always choose that path.

Perhaps this shouldn’t even need to be said, but children with disabilities are individuals in their own right and do not exist merely as cosmic self-improvement projects for others, let alone exist as “proof” of their parents’ moral superiority. No one should be brought into this world to suffer just so others can “learn important lessons.” The price for our lessons should never be paid for with the suffering of others.

Following a poor prenatal diagnosis, the main question I grappled with was “If I was the fetus facing this grim prognosis, these surgeries and these disabilities, what choice would I want my mother to make?”

If you look, you can find some really great, and honest, books and blogs by parents of children with disabilities. One I do recommend is David M. Perry. He is a proponent of disability rights, an awesome example of accepting our children for who they are, and meeting their needs instead of demanding they meet ours, and he also supports a woman’s right to choose.

 

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