Why we’re not suffering

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The following article is based on the definition of “suffer” from Merriam-Webster Online: to become worse because of being badly affected by something.

Biologist Richard Dawkins recently caused a commotion with his negative Twitter comments about Down syndrome. In defense of himself, he further explained on his website, “If your morality is based, as mine is, on a desire to increase the sum of happiness and reduce suffering, the decision to deliberately give birth to a Down’s baby, when you have the choice to abort it early in the pregnancy, might actually be immoral from the point of view of the child’s own welfare.” Read about his “apology” in The Guardian. As if his comments weren’t bad enough, his use of the phrase “Down’s baby” is like nails on a chalkboard to me.

A few months later, an article appeared in the Daily Mail, UK from a woman who said the best thing she did for her son with Down syndrome was to abort him. A friend of mine had posted it on her facebook page in support of how awful it was. I commented on my friend’s post, but could not bring myself to read the article, still haven’t, and don’t want to. I linked to it here as a point of reference for my readers.

I would like put some words in writing to refute Dawkins’ erroneous arguments. Because you see, Mr. Dawkins, my Little Guy has managed to “increase the sum of happiness and reduce suffering” in my family and the lives of countless people around him since the day he was born. So according to your definition of morality, it would have been immoral for me NOT to bring my son into the world.

One blogger did a fantastic job of speaking to Dawkins through her writing. My favorite part of her article is one simple question: “Why are we so afraid of doing hard things?” And that’s really what it comes down to, isn’t it? No, we’re not suffering, but no, our life is not easy. And that’s okay. How many people do you know whose life is easy?

I think about the people who in the past year have said something to me like, “I don’t know how you do it all with 4 kids! I only have (insert number <4) and I feel like it’s so tough!” Here’s the thing: it’s just as hard to have 1 kid as it is to have 4. Okay, it might not actually be just as tough, but I can tell you from experience that when you are in that situation, it feels just as tough. Also, I truly don’t “do it all.” If you have visited my house in the past two years, you know that.

So, my point is that hard work is much different than suffering. I do not suffer when I take my Little Guy to more doctors’ appointments than my other kids. He doesn’t suffer either, except maybe when he gets a blood draw, but my typical kids get them too. Thus, Down syndrome ≠ suffering.

I do not suffer when my Little Guy throws his plate on the ground at every meal. He most certainly doesn’t suffer, because he’s having a grand time when he does it. He figured out that he can slide his cup across the table until it gets stuck between the chair back and the edge of the table. He got a big laugh out of that one. Sure, it’s annoying, and sometimes (okay often) it makes me mad, but it doesn’t make me suffer. If little annoyances made me suffer, I’d need a big lesson in putting things in perspective.

In trying to think of some examples where other people might perceive our family as suffering, all I could come up with is possibly the times I might appear to be frustrated by Little Guy’s tendency to yell loudly when he is upset, when other people are talking, or when his baby brother cries. More often than those examples, I thought of scenarios where people would perceive our family as NOT suffering:
-E walking Little Guy to his classroom at school, hand-in-hand
-Little Guy getting off his bus and waving madly to his bus driver
-Little Guy burying his face in my hair as I hold him at church
-Little Guy holding my hand as we stroll around our yard
-Bud giving Little Guy hugs while they watch E’s softball games
-Little Guy rushing to the doorway to give hugs to his grandparents

Even better are the scenes when nobody is watching. These are the undeniable ones showing that not only are we not suffering, but we experience more joy than we ever could have known without our Little Guy:
-sitting on his floor reading Green Eggs and Ham before he goes to bed. He laughs every time I say the underwater, “I do not like them, Sam-I-Am” as if I am under water.
-walking down the stairs in the morning as he waves and says bye to his bed and stuffed animal. Today he said, “bye sleep!” as he waved.
-sitting on the floor of our family room as he tenderly pets his beloved dog
-eating his favorite pudding with a spoon (I hide his vitamins in it!) and the way he asks for help getting out the last bite
-watching his excitement as he sees a bus driving by
-enjoying music, including signing and singing “The More We Get Together” just like they do at school, singing Mumford & Sons in the car, and dancing to “What Does the Fox Say” by bouncing to the beat in his child-size recliner
-praying before meals, especially the way he reverently folds his hands until we finish
-giving affection freely, and using his sixth sense to know when people need his affection most

Of course, these examples are just the tip of the iceberg. Life with Little Guy is more rich, more valuable, and more rewarding than it would be without him. My words to parents facing a Down syndrome diagnosis, without a shred of doubt, are:

if only all parents could be so lucky.

meeting kyle

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

8 thoughts on “Why we’re not suffering

  1. Lisa Husnick

    I think the most important aspect to focus on with people with Down’s Syndrome is that they are a human being, not their congenital disorder. You can tell what people are focusing on by what word they say first: a child with Down’s Syndrome or a Down’s Syndrome child. Every person in this world has different strengths, weaknesses, character traits, wants, likes, dislikes, etc. that makes them unique. Are we as a society going to value ALL humans or not . . .

  2. terrypetersen

    I held my breath as I read the first portion of your blog. I couldn’t imagine life without my granddaughter. She may have Down syndrome, but our lives have turned upward because of her. Our perspectives have changed–for the better. Thanks for your sharing and keep teaching the truth!

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